finalpts report for patient perspectives: clinical trials · i believe clinical trials are a way to...

FinalPts_Report for Patient Perspectives:Clinical Trials

T his report is filtered

Only show: #1 Question "Are you a Patient or Care Partner/Family/Friend? " is one of the following answers ("Patient")

C o mpletio n Ra te: 8 8 .3%

Complete 588

Partial 78

T o ta ls : 6 6 6

Response Counts

1. Are you a Patient or Care Partner/Family/Friend?

100% Patient100% Patient

1

Value Percent Responses

Patient 10 0 .0 % 666

T o ta ls : 6 6 6

2. How likely is it that would you participate in a clinical research study?

7% Very unlikely7% Very unlikely

5% Not likely5% Not likely

13% Undecided13% Undecided

26% Possibly likely26% Possibly likely

49% Very likely49% Very likely


Very unlikely 6.8% 45

Not likely 4.6% 30

Undecided 13.1% 86

Possibly likely 26.3% 173

Very likely 49.3% 325

T o ta ls : 6 59

3. Between your initial cancer diagnosis and your first treatment, did you everconsider participating in a clinical trial, and why?

2

57% Yes, because57% Yes, because

43% No, because43% No, because


Yes, because 57.4% 379

No, because 42.6% 281

T o ta ls : 6 6 0

Yes, because Count

One was offered by my doctor. 3

I believe in them being a nurse. Have been in 4, 2 at the NIH, 2 at DF 2

I was in a clinical trial, adding rituxan to CHOP, with excellent results. 2

Not positive about available treatment. Wanting to be part of something big g er than myself 2

Felt it was my only option to g et into remission. 1

I am currently in a clinical trial. Better option than the sole ag ent I would have been treated with,

participation furthers research towards a cure, amazing care by the study team, and an added

bonus-treatment drug s are covered.

1

I have 17p deletion abdn 1

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3

g et the medication free 1

> in the hope that my trial data could someday help others, especially my family >It was

presented as a positive option.

1

...it was a way of receiving the 'newest' Oral medical advances 1

1) it would save my life 2) would be helpful to others in diag nosis 3) encourag e others to

participate.

1

2 docs broug ht them up 1

A better chance at improvement. 1

A clinical trial was offered to me by my Specialist as a first treatment option. 1

Access to experimental medication and travel assistance. 1

Access to latest drug s 1

Acess to Medication. 1

Advanced drug s 1

Advances can only be made if we participate in trials. 1

Always looking for latest options 1

Am a 15 year survivor of PV. At a crossroads on whether to try interferon or Jakafi 1

As a scientist, I believe passionately in the need for participants. My first 2 treatments were

clinical trials, 20 12 & 20 16.

1

Asked by consultant and hoping would be randomised to new drug as not feeling well on one I

was on

1

Aspirin treatment only. 1

At the time, nothing was available and this offered some hope 1

Because I seem to relapse on everything . 1

Because I thoug ht I had a chance 1

Because I was very familiar with clinical trials due to my years as an oncolog y rep and trainer 1

Yes, because Count

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4

Because it was the newest treatment available and I felt I would be watched closely and g et

g reat care

1

Because new promising drug s not available except on a trial 1

Because there were others before me 1

Believed I would receive the latest treatment possible. 1

Best treatment 1

But, I was never asked 1

Cancer free 1

Cost of drug s 1

Cost of treatment 1

Could improve prog nosis 1

Current drug was not controlling disease 1

Current medical is losing effectiveness 1

Current options toxic to me 1

Cutting edg e treatment, hekp g et treatments out faster 1

Diag nosed smoldering and wanted to treat 1

Did not want to do bone marrow transpalnt 1

Different drug s would be an option. 1

Doctor recommendation and desire to help others 1

Doctors felt is was an excellent treatment opportunity for my CLL. 1

Dr recommended 1

Dr recommended 1

Dr sug g ested I participate because I am hig h risk althoug h I have only small symptoms at this

point

1

Yes, because Count

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5

Felt it would help personally and others in the future 1

For a cure! 1

For the opportunity to have long -term remission 1

Get newest drug 1

Good to have options 1

Haven't had treatment but trials seem to be cutting edg e research 1

Helps everyone and due to cost of meds. 1

Helps others and me 1

Hope it would help me. It was the rig ht thing to do. 1

Hoping it would help me and others. 1

How else do you find new answers? 1

Hydroxyurea and anag relide didn't work 1

I CLL and I want to be cured. 1

I am HRSMM and do not want to watch and wait 1

I am SMM but prog ressing slowly. 1

I am a nurse and feel it is important to do so 1

I am currently in a clinical trial that was available at my treatment center. 1

I am in a clinical trial. My first treatment was at the beg inning of the clinical trial. 1

I am in my third clinical trial now. I believe that g etting cutting edg e treatment has kept me alive

much long er than my initial doctor expected.

1

I am in remission, thanks to Dr. Keating 1

I am interested in furthyering research and understanding of PV and other MPD's 1

I am interested in treatment that stops disease prog ression. 1

Yes, because Count

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6

I am intolerant of the normal drug s 1

I am open to all options 1

I am willing to advance research and help all MPN patients 1

I assume trials were on the cutting edg e. 1

I believe clinical trials are a way to g et the newest and best chance to fig ht my disease 1

I believe new studies bring positive results 1

I believe that the clinical trials are the best way towards finding new cures 1

I believed it would potentially benefit myself, but also help my fellow friends also battling their

MPNs

1

I chose a clinical trial at UCSD as my 1st line of treatment - Gazyva + Ibrutinib 1

I did a clinical trial rig ht after diag nosis because I did not want to watch and wait. 1

I did not want chemo. 1

I did not want to pass away 1

I did not want to watch and wait anymore. 1

I did participate . 1

I didn't want to do chemo and wanted access to specialists. 1

I don't feel the traditional route is a g ood alternative. 1

I ea 1

I feel research can help finding a cure and maybe extend my life 1

I felt it would provide access to effective treatments that were not yet fully approved 1

I felt the desire to contribute to the g athering of knowledg e about treatments for cll 1

I had 11Q deletion 1

I had limited treatment options due to 17 P dilation/T P 53 1

Yes, because Count

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7

I had read in a medical journal the advantag es of taking part. 1

I had unusual mutations that meant I would not respond to chemo 1

I hadn't decided on treatment yet and thoug ht it mig ht be best for me. Also a small part of me

wanted to help research

1

I have 17pdel. 1

I have already participated in a study. 1

I have been on W&W too long 1

I have not had first treatment but I've inquired about clinical trials. 1

I have not recieved any treatment to date because I am being treated for another cancer 1

I have not started treatment yet 1

I knew how much research was being done and I was also encourag ed by my doctor Michael

Keating that we were g etting closer to a cure. Clinical trials offer a lot of hope.

1

I know it could help me and I am ready to join another clinical trial as my CLL is acting up ag ain. 1

I know that clinical research is how we achieve practice improvements 1

I like the idea of participating in a newer cure 1

I like to have many treatment options and I like to be part of furthering a cure. 1

I liked the approach. It made sense to me. 1

I live very close to MDA 1

I looked, but doctor's said my case was too unusual to likely fit any. (T hose were doctors at

teaching hospitals who run studies.)

1

I mig ht develop HRSMM 1

I needed to be fully informed about all available options and their pros & cons 1

I nothing was stopping my refractory NHL 1

I participated in a trial 1

Yes, because Count

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8

I participated in clinical trial and on January 7 20 20 will be celebrating 5 years remission 1

I participated in one in the beg inning and thoug ht it carried throug h until I had a relapse and then

g ot into another one. I did know if the trial had stopped in the middle.

1

I read info about it and thoug ht it was a g ood idea. 1

I selfishly wanted to find the "cure" and share it with many patients. 1

I thoug ht I mig ht learn more about PV. 1

I thoug ht the treatment would help me 1

I tried g oing treatment free. I want to find a cure! 1

I want a cure 1

I want every chance for a cure. 1

I want the best life I can g et. 1

I want the best results 1

I want the best treatment. 1

I want to avoid chemotherapy 1

I want to be on the cutting edg e 1

I want to do what I can to help find a cure 1

I want to g et better 1

I want to help find a cure 1

I want to help find the best treatment. 1

I want to help move research forward 1

I want to help others CML. 1

I want to improve my body's health to the full potential 1

I want to live 1

Yes, because Count

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9

I want to live! Maybe I could help someone else have a better quality of life . 1

I wanted a chance to g et the newest drug s 1

I wanted a chance to have access to the newest drug s 1

I wanted a non-chemo option for treatment & I was concerned about out of pocket costs outside

of a trial

1

I wanted a second opinion and went to Mayo 1

I wanted access to the newest medication 1

I wanted access to whatever would kick MF to the curb 1

I wanted as much up to date info as possible 1

I wanted the best research-based treatment. 1

I wanted the chance for remission. 1

I wanted the medication provided at no cost. 1

I wanted the most current treatment. 1

I wanted to 1

I wanted to avoid a transplant. 1

I wanted to be part of a treatment that would help me and cure the disease 1

I wanted to find the cure 1

I wanted to help others in the future 1

I wanted to receive the latest therapy that was appropriate for my circumstance. 1

I wanted to try anything 1

I wanted to try the DNA Vaccine for CLL. 1

I was able to avoid fcr recommended by my doctor 1

I was afraid and nervous about the treatment offered me 1

Yes, because Count

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10

I was becoming very sick and it seemed my only option 1

I was diag nosed 9/20 14, by Dr. Jens Rueter. He said if I could hold off treatment there will be a

pill I may qualify to use, Imbruvica. I later had another g reat oncolog ist take over my care, fall of

20 18 it was decided I would need to beg in treatment. I had a second opinion at Dana Farber

with Dr. Jennifer Crombie which she did advanced testing . I went down to Boston to see if I

would qualify for a new clinical trial, where there were triple parts to the treatment. With my

poor prog nostic markers I did qualify. Unfortunately the decision I had to make dealt with

lodg ing . Where to stay as the treatment was in several parts with stay overs. T ravel from

downeast Maine would entail 7 1/2 hours, with lodg ing and travel time would be too much. I

beg an Imbruvica 1/20 19 , which two oncolog ist felt I would do well with.

1

I was diag nosed Smoldering , hig h risk, and on the edg e of active disease. I did not want to wait

for bone lesions or kidney damag e

1

I was diag nosed as Smoldering and did not want to just wait for prog ression without trying

something .

1

I was dying . 1

I was excited to assist in the development of new treatments 1

I was g etting sicker and the only way to be offered Ibrutinib on the nhs was to take part in a trial 1

I was hoping to see what early treatment would do. 1

I was horrified to learn that there's only palliative care for myelofibrosis 1

I was in a clinical trial 1

I was in a clinical trial from the beg inning of my treatmemt 1

I was interested in more cutting edg e treatments. 1

I was interested in treatment options other than the standard of care. 1

I was looking for something new and effective. 1

I was looking for the best possible treatment 1

I was not happy with the only medication option they g ave me as it is quite toxic 1

I was offered participation in a clinical trial at the time of initial treatment. 1

I was offered the chance to participate. 1

Yes, because Count

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11

I was preparing for a BMT and my doctor was the PI on a trial which focused on T -cell depletion

to eliminate GvHD.

1

I was relapsing fro chemo 1

I was terrified and was willing to try anything that mig ht put my MPN into remission. 1

I was treated using a trial protocol 1

I was unhappy with the currently approved options. 1

I was willing to try whatever my doctor thoug ht could prolong my quality of life . 1

I wasn't up for treatment yet. Numbers were rising . So I entered a trial for Isatuximab and am

now finished and MRD neg .

1

I would do anything to make my outcome better 1

I would have access to novel ag ents 1

I would like some g ood to come out of my illness, even if it wasn't in time to help me 1

I would like to be cured. 1

I would like to know whsy is available 1

I would love to help someone about DCIS 1

I'm been battling since my 40 s so still hoping for a cure. 1

I'm terminal.. I have nothing to lose 1

I've been in two trials with my T KIs 1

I've read repeatedly (Patient Power and elsewhere) that we CLLers should all be in a trial, to

further research, to help with the hig h cost of drug s

1

Ibrutinib held the promise of reduced side effects over FCR 1

If treatment doesn't work 1

Immunotherapy is the only real hope for a cure. Chemotherapy just buys time. 1

Important for research and also helping others 1

Yes, because Count

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12

In hopes of finding a cure or more effective drug s. I'm currently in a clinical trial and am doing

very well. Hopefully, when the trial I'm in is concluded it will provide another option for those

facing treatment.

1

Is very important to find News treatments. 1

It can improve my chances of better health and help others as well. 1

It depends on what the trial was 1

It g ave me access to a new non-chemo drug and I would be closely monitored 1

It g ave me access to drug s I could g et no other way. 1

It g ave me access to drug s not otherwise available. 1

It g ives early access to new drug s 1

It helps promote new drug s 1

It involves the latest therapies. 1

It is a chance to g et cutting edg e treatment and a chance to actually help other patients by

providing more data points for novel treatments.

1

It may help further treatment for cancer patients and it mig ht help save on enormous drug co-

pays.

1

It mig ht help me and others 1

It offered a way to g et state-of-the-art-care (or something ne) and was available locally 1

It offered more hope 1

It offered the best option 1

It was my last chance. Compassionate use 1

It was offered 1

It was offered but my insurance company said no. 1

It was offered to me by my Myeloma specialist as an option to Watchful Waiting with my dx of

Smoldering Myeloma.

1

Yes, because Count

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13

It was recommended by my MM Specialist. 1

It was sug g ested by my Oncolog ist. 1

It was the best treatment available at the time 1

It was the only option offered 1

It will g ive me more current and efficient treatment 1

It will help all involved! 1

It would help with research 1

It's the rig ht thing to do if needed. 1

Jakafi didn't shrink spleen 1

Joint decision with my MM Specialist as best option. Other trials I participate in as g eneral

research, not as part of my treatment plan.

1

Knew the risks + benefits 1

Learned about trials thru internet 1

Limited treatments which had all failed so trial seemed to be the best option 1

Looked like g ood chance for positive results 1

Looking for the latest treatments available 1

MM specialidst had a slot to fill 1

Maybe something better than the standard treatment 1

Medication durability questions 1

Mig ht be better 1

Money concerns 1

Most current research reflected in trials and is the best way to access these drug s or drug

combinations

1

My Drs recommended it 1

Yes, because Count

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14

My Oncolog ist shared that she had another patient doing quite well in a specific trial for which I

mig ht be elig ible.

1

My consultant told me about a trial that was available 1

My doctor g ave it as an option 1

My doctor recommended it. 1

My doctor told me about it and I trust her 1

My doctor was leading it at my cancer hospital and I was a g ood fit. 1

My doctor who was assig ned to me in the hospital, his boss heads up the research department,

so he knows of a lot of trials

1

My dr sug g ested it would be the bes5 treatment match for me. 1

My hematolog ist asked me to consider clinical trials. 1

My oncolog ist has me on Calquence and venclexa. He broug ht my case up at a meeting , and

since I'm a relapse of MCL, he wanted to try something different. So far so g ood.

1

My physician recommended it 1

My specialist raised it and it seemed likely to me to have benefit 1

NIH Natural History study 1

New advances with drug s 1

New trials of Ibrutinib and venetoclax showed real promise 1

Newer treatment 1

Newest meds are being used. And to help future patients in their CLL journey. 1

No cure at the time. 1

Not really sure why 1

Only option for early treatment 1

PCI 32765 participant 1

Yes, because Count

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15

Prog ress doesn't happen without reserch 1

Promising results 1

RX dose reduction 1

Recieve advanced treatment 1

Recommend by MPN Specialist 1

Recommended by physician, Dr. T homas Kipps 1

Relaspe 1

Research is necessary and vital to future tx. 1

Research offered more efficacious drug s for unmutated IGHV patients than standard practice at

the timeI was diag nosed.

1

Run out of other options 1

Stable SMM. No T x. Considered clinical trial because I met criteria. But I'm stable at low level

(10 %). Would consider trial for a couple reasons: 1) possibility of leading edg e treatment, 2)

help advance the science.

1

Standard of care is just that, we need better, more effective treatments and clinical trials can

help discover these. We need answers.

1

Standard treatments weren't working 1

Study had shown improvement in anemia 1

T EST DAT A, YES considered participating 1

T hat was my only option after standard of care quit working . I have been on 3 clinical trials and

currently still on one.

1

T he choice for me was a trial which offered either Revlimid or watchful waiting , and both were

acceptable.

1

T he current treatments have not yielded g reat results. T he clinical trial has had promising

results in relapsed AML, so it would only make sense that it would do well as an upfront

treatment.

1

T he oncolog ist decided immediately to sug g est the clinical trial and start the first treatment. 1

Yes, because Count

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16

T he only hope for cure is more research and they cannot do it without trials. 1

T he positive impact on my costs and to facilitate new treatments and possible cure. 1

T he results looked promising and the potential to help find a g ood treatment option for others. 1

T he risk of GVHD 1

T he trials sounded like they would help me g et my MM in remission 1

T here can be a cure 1

T here cave 1

T here is always hope of a break throug h with new drug s. 1

T here is no cure for PMF. 1

T here was a Phase II trail that was appropriate for me. 1

T here was no information and I didn't know anyone with the condition 1

T here's currently no cure . 1

T houg ht is g oing active; still smoldering 5 yrs later 1

T houg ht it provided the possibility of a cure. 1

T houg ht it was my best option 1

T o help find a cure 1

T o help my health issue 1

T o help others and receive close supervision of my condition. 1

T o try the newest treatments and help other patients 1

T omorrow's meditation today. Another option. 1

T rials are necessary so new treatments can be developed. We owe it to future CLL club

members to eng ag e in trials.

1

Unsure of what happens long term since I cannot control it now 1

Yes, because Count

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17

Want to help find a cure 1

Want to help find a cure and hope it would also benefit myself 1

Wanted to help cll research 1

Wanted to help research and felt NIH was a g ood place to start 1

Wanted to know what my options were 1

Was available 1

Was my best option 1

Wasn't offered one until I went to MDA. 1

Watch and wait was not an option. I wanted to do something . 1

We all need to do our part to find a cure 1

We all need to help each other 1

We were uncertain about whether health insurance would cover the cost of treatments 1

Why not 1

Without trials we would have medications 1

Would like to assist in research to treat cll 1

Yes because a cure is close. 1

advances in technolog y 1

because I refused chemo and wanted the targ eted drug s only available in clinical trials at the

time treatment was needed

1

because I think they mig ht hold the cure 1

because I'd be at the source of knowledg e and help 1

because it was offered. Otherwise the cost of the drug s would have been a burden for the

family.

1

best treatment options 1

Yes, because Count

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18

better options 1

chance for a successful outcome 1

chance to skip chemo 1

cost 1

evaluating the newest treatments 1

extend life 1

g et 2nd g en BT K 1

g et most up to date meds 1

had cancer 20 0 2 came back 7 years ag o this year. stag e 4 I know standard chemo will just kill

me off so clinic trials are so g ood for me as there is always hope

1

hoping for a natural cure 1

improve numbers 1

it helps further research and help others 1

it represented the latest and most promising treatment 1

it seemed very promising 1

it was offered by my Dr 1

it was presented to me as my option 1

it would have enabled treatment to happen 1

it would provide me witih the best care 1

its the only option with my condition. 1

local cll treatment inadequate 1

more targ eted treatment 1

needed it 1

Yes, because Count

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19

new drug s & cost 1

no at first, didn't trust them - after lots of research and timing with CLL - a clinical trial was literally

the only thing that made sense

1

of ag ressive relapse 1

of hope for a cure or long er and better quality of life .o 1

of the reduced cost of the trial compared to the hig h cost of treatment. 1

of your perspective on Clinical T rials and how a clinical trial drug helped you with your CLL

diag nosis.

1

one was available and i was diag noised at stag e 4 cll 1

potential better treatment 1

potential state of the art treatment and help future patients 1

provides an opportunity for long er survival and helps future patients. 1

seemed like best option 1

seemed most hopeful option 1

smoldering myeloma can only be treated throug h CT at this point in time. 1

the clinical trial provided access to treatment and care that was otherwise unavailable. 1

the cost and it was offered 1

tired of waiting 1

to access novel ag ents 1

try to avoid chemo's 1

young at time of diag nosis 1

T otals 370

Yes, because Count

No, because Count

Did'n 2

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20

It wasn't offered 2

My doctor did not mention clinical trials an option. 2

None available 2

fear 2

knew nothing about trials 2

needed info for my disease before considering any other treatment 2

17 p deletion. Won't make much difference 1

8years, not time to treat 1

At that time, 20 0 5, there were few treatment options. I wasn't informed of any. 1

At the time of my first CLL therapy, there were not a lot of options presented to me. FCR was the

"g old standard."

1

At the time, none were presented to me. 1

Available T KI was recommended 1

Because I was still trying to understand the disease 1

Because my hemotolog ist said I could live to be very old on hydroxyuera 1

Clinical trial option was not offered. T hing s happened very quickly. 1

Considered as a low risk PV patient 1

Currently in a study 1

DIDN'T KNOW OF ONE 1

Definitive medicines were available 1

Did not want too 1

Didn't have the knowledg e 1

Didn't know about any 1

No, because Count

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21

Didn't know i could, it was never offered 1

Didn't know if I would be suitable. 1

Didn't know it was an option. 1

Didn't know what MM was never mind asking about clinical trials 1

Disease being manag ed 1

Doctor didn't make me aware of any trials 1

Doctor information recommending other treatment 1

Don't need it 1

Don't need treatment yet 1

Dr didn't mention it 1

Dr said unlikely I'd be accepted 1

Dr. Keeti 1

Dx 20 0 4 in Spokane WA so didn't know of any. 1

Dx in last six months. Not a discussion I've had with my doctor. 1

Fear 1

Have not had treatment 1

Haven't had treatment yet 1

Haven't started treatment yet 1

Hectic life style 1

I am a very private person 1

I am at Stag e 0 and was told it would take about 10 years to prog ress. 1

I am not under treatment at the moment. 1

I am on watch and wait 1

No, because Count

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22

I am responding to HU well at this time 1

I am stable at this time 1

I am still in watch and wait 1

I am wait and watch 1

I am watch and wait. 1

I choose time tested peg ulated interferon. 1

I did know anything about trials 1

I did not hear about any 1

I did not know 1

I did not know about them when I was diag nosed. 1

I did not know they were available to me. 1

I did not qualify for any trials 1

I did not understand what a trial entailed. 1

I didn't know about clinical trials 1

I didn't know about them until further into my disease prog ression. 1

I didn't know anything about them 1

I didn't know much about clinical trials at that time. 1

I didn't know they existed 1

I didn't know they existed. 1

I didn't know they were an option 1

I didn't think I needed to. I naively thoug ht I would g o into "remission" after my SCT . 1

I didn't understand what a drug trial entailed. Knew of horror stories from years ag o 1

I do not currently require treatment 1

No, because Count

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23

I do not know about any trials and the treatment has not beg un. 1

I feel Hydrea rig ht now is working well for me. 1

I followed doctor's advice to try conventional therapy. When that didn't do the job I entered a

trial without hesitation.

1

I had not g one thru all the available protocols, then developed MDS. Had to have an Allog eniec

transplant to put the MDS in remission.

1

I had not had any treatment at that point & felt traditional treatment was the way to g o for first

line therapy.

1

I had other more traditional options 1

I have dementia 1

I have never been asked to participate..it has never even been mentioned 1

I have not had any treatments, still in the watchful waiting mode 1

I have watched leukemia trials over the years. As my mom has CLL in the 80 s and 90 s passing

away in99. I would read about the failures end it was just hard to read about them over the

years. I was diag nosed in 20 0 5 and I just still have those thoug hts in my head from back then

1

I haven't had to consider it yet. I'm still on first line treatment 1

I haven't needed treatment yet 1

I knew nothing about them. 1

I need to be maintained to takecareof my mother 1

I needed to understand what I had to deal with first for me and my family. 1

I never had this opportunity 1

I never thoug ht that breast cancer would effect me. 1

I remain in watch and wait 1

I started the trial within a month of diag noses and everything was new. I was trusting the Doctor. 1

I take care of my 91 year old mother and i wanted to know i was g etting treatment that would

help me.

1

No, because Count

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24

I thoug ht maybe I'd die and that I should follow doctors protocol 1

I thoug ht the clinical trials were like using samples 1

I wanted targ eted therapy without chemo and trials available did not offer that. 1

I wanted to see how I responded to first line 1

I was afraid to be in the untreated g roup 1

I was an ER case and needed treatment immediately 1

I was asked about participating in a trial 1

I was basically in denial, ig nore it & it will g o away. 1

I was diag nosed 7 years ag o. Standard of care was RVD. My primary and consulting oncolog ists

ag reed (both in Boston). Stem cell transplant within first year f diag nosis. I g ot 2-1/2 yrs of

remission.

1

I was doing the first six rounds of chemotherapy; FR, FR, FCR, FCR, FCR, FCR. 1

I was hospitalized at diag nosis and treatment needed to start immediately. My oncolog ist and I

discussed clinical trials briefly - at the time was not an option.

1

I was hospitalized for 3 weeks and needed to beg in treatment immediately. 1

I was hospitalized on morphine so I literally was out of it and unable to make a decision or have a

conversation

1

I was in pretty bad shape at the time of initial diag nosis. MY hematolog ist wanted to start

therapy immediately.

1

I was not familiar with my disease, it was all new to me. 1

I was not sure 1

I was overwhelmed with the diag nosis 1

I was seeking the best treating physician 1

I was told I didn't need any treatment yet 1

I was told that there were VERY effective drug s to treat my CML that had few side effects. 1

No, because Count

T otals 271

25

I was told this illness is nothing much to worry about and I would be fine. T his was 25 yrs ag o. 1

I was too old for a stem cell transplant and didn't fit into any trials at that time,20 15. 1

I was unaware of any and did not have any info on any. T his was 20 years ag o. 1

I was unaware that there are clinical trials for newly diag nosed patients who do not have a rare

disease

1

I was under the impression that established treatments would take care of my AML 1

I wasn't aware of any availability 1

I wasn't offered this, nor did I think of it. 1

I wasn't sure if I would qualify 1

I went into remission in 2 mo st relapse 7 years later 1

I'm at Stag e 0 , WW. 1

I'm doing well on conventional therapy 1

I'm g oing to be 78 in May..and traveling up to .offitt is a problem for me. 1

I'm in the watch and wait mode 1

I'm manag ing okay with current treatments. Having said that I can't take Hydrea. I can't take

Interferon. I'm taking Anag relide althoug h I have Small Vessel Heart Disease and have had 3

heart attacks. My haematolog ist says there isn't anything else safe for me.

1

I'm not close enoug h to Boston 1

I'm not interested 1

In W & W 1

In the "watch and wait" phase I did not think I needed any treatment. 1

Indolent disease and slow prog ression. Diag nosed in 20 0 4 and still untreated. 1

It seemed more of a last resort 1

It was never an option g iven by the physician 1

No, because Count

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26

It was not discussed 1

It was not mentioned 1

It was not presented as an option 1

It was offered in Mexico City and I just didn't trust the location. 8/65 died in ruxolitinib trial 1

It was offered or discussed. I was advised that Hyper CVAD was the best option 1

It wasn't offered 1

It wasn't offered to me. 1

It wasn't on my radar, not discussed by provider, or following directions from provider and not

researching my options

1

Just never thoug ht about it. 1

My Dr. Seemed to have my treatment undercontrol 1

My diag nosis is cml and treatment started that very day. T he standard treatment is widely

accepted as the best option, per my oncolog ist, and after my bone marrow biopsy it was

tailored specifically to my case.

1

My doctor says I'm "not sick enoug h to be treated" 1

My doctor thoug ht I would respond to FCR chemo 1

My doctor told me it was a last resort if other treatments didn't work, but my treatment was

helpful.

1

My doctors have not offered a treatment plan, or any course of action. For now, it's just a 'wait

and see' plan.

1

My dr didn't speak of that as an option 1

My first oncolog ist was not interested is other opinions or research—he said "why be a g uinea

pig when there is a standard treatment already"

1

My first treatment was/is a clinical trial 1

My hematolog ist said I was hig h risk and had to start treatment immediately and I had 6 years to

live

1

My myeloma was not hig h risk and I was told front line treatment with RVD is very effective. 1

No, because Count

T otals 271

27

Need more data on my condition. 1

Never broug ht up to me 1

Never had the opportunity 1

Never offered 1

No information 1

No knowleg e they existed 1

No offer 1

No one offered a clinical trial to me. Diag nosed 11 months ag o. 1

No one talked about it 1

No treatment yet 1

No treatment yet 1

Non offered to me. Was not aware of such thing s. 1

None was offered 1

None was offered but also had g ood indicators and was on W &W for 6 years. Standard

treatment was effective when it was time

1

None were available 1

None were available to me at my cancer center. 1

Not appropriate yet? 1

Not aware of details 1

Not enoug h information 1

Not g iven any options from my doctor. 1

Not needed 1

Not ready for treatment - my doctor says I'm "not sick enoug h to be treated." 1

No, because Count

T otals 271

28

Nothing in area I lived, now I have breast cancer 1

Nothing offered 1

On Active Observation 1

One was not offered to me 1

One wasn't available in my area of T ennessee. 1

Over the last 16 yrs I have successfully beaten ET and PV using lifestyle (+ aspirin and venes). It

is epig enetics which holds the key to cancer survival, particularly MPNs.

1

Overwhelmed by news and providers didn't discuss clinical trials. Assumed the "standard"

induction therapy would be sufficient.

1

Physician did not share clinical trial options 1

SCT was recommended 1

Sct 1

Since I have been smoldering for so many years (9), I have now decided to wait it out. 1

So far the treatments offered have kept the myeloma at bay. 1

So far, my CLL is manag ed with medication. 1

Still in watch and wait but very close to treatment 1

Still watch & wait 1

Surg ery was recommended - immediately. Marg ins and lymph nodes were clear. I thoug ht I was

"cured".

1

T he current treatments are working 1

T he doctor felt that I would be g ood on the medicine that he was g oing to g ive me. 1

T here are none in proximity to where I live. 1

T here has not any for et. 1

T here wasn't one available that was appropriate 1

No, because Count

T otals 271

29

T here were no trials 1

T here were none in South Africa at the time. 1

T here were otheroptions available 1

T hey are not in my area. 1

T hey are too far away. 1

T hey had a treatment plan for me with drug s already working 1

T hing s are a whirl at this time...still trying to comprehend the new medical lang uag e and my own

frag ility. Physical was g eneral oncolog ist who sug g ested the SOC.

1

T houg ht standard of care should be tried. 1

T oo unstudied as yet. T o many toxic results for me. 1

T ook FCR back in 20 11 1

T reatment was already available 1

T reatment was available -hydra. 1

T rials worry me 1

T ried existing treatments 1

Unavailable 1

Unaware 1

Unaware of any that would be appropriate 1

Unaware of what was on offer 1

Was to busy 1

Wasn't an option for me, wasn't offered 1

Wasn't asked to 1

Wasn't aware of that option 1

No, because Count

T otals 271

30

Wasn't broug ht up that early. 1

Wasn't offered to me 1

Wasn't really aware of studies, etc. 1

Wasn't told they were available/or that I possibly could 1

Wasnt offered 1

Watch and wait at this time 1

Went in to early remission which only lasted a short time 1

afraid 1

at the time, clinical trials were not an option for initial treatment 1

because it was never presented by my oncolog ist as an option. 1

clinical trial is very poor in Serbia 1

cll under control 1

current treatment options were best 1

did not know about them 1

did not know if there were any in my area 1

didn't know of any 1

direcl treatment started with Jakavi 1

distancr 1

i had to have immediate treatment on diag nosis 1

it was never broug ht up 1

lack of info 1

lack of information 1

my doctor had something else to recommend: VRD 1

No, because Count

T otals 271

31

my dr. said I did not qualify 1

my oncolog ist felt standard treatments would g et me to complete response. 1

never came up with my doctors 1

no need 1

no treatment yet 1

none offered 1

not an option 1

not been treated yet 1

not needed 1

not offered 1

not offered one 1

not sick enoug h to take the risks 1

nothing appropriate available locally 1

one wasn't available 1

pretty clear view on benefits / need / efficacy of Std of Care option 1

requirement of bone marrow biopsy 1

sceptick 1

smm still looking at treat or not 1

standard treatment available 1

there wasn't a trial offered 1

too far to travel 1

too many unknowns 1

unaware of available trials at the time. 1

No, because Count

T otals 271

32

waiting to see first treatment 1

was not an option 1

wasn't aware clinical trials were available 1

T otals 271

No, because Count

4. At anytime, during your care, did your medical team discuss participating ina clinical trial?

57% Yes57% Yes

43% No43% No


Yes 56.9% 373

No 43.1% 283

T o ta ls : 6 56

5. If Yes, was it discussed before your first cancer treatment, cancer retreatment, orboth?

33

57% Before Initial Treatment57% Before Initial Treatment

16% After Relapse16% After Relapse

6% After Multiple Relapses6% After Multiple Relapses

20% Other - Write In20% Other - Write In


Before Initial T reatment 57.4% 213

After Relapse 16.2% 60

After Multiple Relapses 6.2% 23

Other - Write In 20 .2% 75

T o ta ls : 37 1

Other - Write In Count

7yrs after diag nosis 1

ASCT was sug g ested during my induction...I was put in contact with MDAnderson doctors who

offered me a transplant trial

1

After Completing induction treatment 1

After being in remission 1

After chemotherapy and surg ery. 1

After g oing to MDA for a second opinion. 1

T otals 73

34

After induction therapy just prior to SCT and ag ain this year after relapse. 1

After initial treatment was ineffective 1

After initial treatment, but before first relapse 1

After multiple side effects on different drug s 1

After remission from initial treatment 1

After standard of care quit working . 1

After standard of care treatments failrd 1

After stem cell transplant 1

After the hydroxyurea didn't work I g ot on to a peg asus trial 1

After treamemt 1

After treatment 1

All along the way as a possibility 1

As a future option if current treatment needs to be replaced. 1

As a smoldering patient, early treatment trial options were discussed 1

As an option or adjunct to current treatment. 1

As we watch Jakafi diminish in effectiveness we have discussed the possibility of a clinical trial 1

Asked me if an appropriate clinical trial came available would I consider to participate 1

Aspirin only, doctor mentioned trials first visit 1

Before treatment and after relapse 1

Both 1

Comparing two drug s 1

Discussed if my numbers started to rise. 1


T otals 73

35

Discussed when my 'stable' MF diag nosis started to prog ress (enlarg ed spleen, declining

hemog lobin)

1

During treatment 1

First treatment after second opinion was trial 1

First treatment was the trial drug 1

For shing les vaccine 1

I am still on "current" treatment - wanted an alternative 1

I broug ht it up before initial treatment; unsatisfied with the response, I searched for a specialist

who respected my needs/desires for frontline treatment with targ eted drug s not chemo when

only chemo was available; g rateful I found the oncolog ist and the treatment

1

I did not have treatment yet, but want to be always prepared 1

I discussed it with my oncolog ist after prog ressing to myelofibrosis and I read about a clinical

trial in my area. He said he would recommend it for most people, but not me

1

I have NOT HAD T REAT MENT 1

I mentioned it first 1

I never g ot to remission. It was discussed before I had my Allo transplant in March. I needed an

Allo for MDS, not MM

1

I was diag nosed with the precursor condition for Multiple Myeloma. So with a dx of Smoldering

Myeloma, I can't say that I've had cancer.

1

I was informed before my first treatment and at the start of my relapse treatment 1

I was on treatment and always asked if a trial is available to me 1

I went searching for a trial. 1

It was believed that I mig ht have a cross over diag nosis. 1

It was discussed after I had been treated with Rituxan and failed and then treated with Ibrutinib. 1

My trial option came up after several rounds of established chemo didn't work 1

No relapse, just not full response 1


T otals 73

36

No treatment yet 1

Not in T x yet (SMM) 1

Not in treatment yeat 1

Not yet treated. Preparing for initial treatment. 1

One week after initial treatment of T KI 1

Something to consider when all else fails. 1

Spleen keeps enlarg ing . 1

When medication seemed to stop working 1

When my doctor moved cities she asked me to come to her new city for future clinical trial.

Nothing specific however.

1

When treatment is needed. Still w&w 1

With my 3rd oncolog ist after 4 types of treatments 1

after SCT 1

after induction, pre-SCT 1

after stopping imbruvica 1

after traditional treatment 1

all the above 1

before relapse 1

both before initial treatment and after relapse 1

during induction 1

during treatment 1

early during induction 1

have been in multiple trials 1


T otals 73

37

mostly from me bring ing it up 1

told me nothing out there in my area 1

year later 1

T otals 73


6. If No, did you ever bring up the topic with your medical team and what was theresponse?

37% Yes, and they respondedwith37% Yes, and they respondedwith

63% No, I did not bring it upbecause63% No, I did not bring it upbecause


Yes, and they responded with 36.8% 10 3

No, I did not bring it up because 63.2% 177

T o ta ls : 28 0

Yes, and they responded with Count

None available 4

T otals 10 2

38

No assistance, advice, recommendations or support. 2

..nothing 1

A wait and see statement 1

Absolutely when treatment is required 1

Clinical trails were for last resort. 1

Don't do it or ypou'll be beg inning a lifetime 1

FCR was recommended by 2 different oncolog ists 1

Feel free if you can find one. 1

Go for it. 1

Go onto ??? I'm 1

Head shaking . 1

I am not elig ible at this time, but we would consider it the future. 1

I am now in trial foribrutinib 1

I asked but my doctor said it wasn't in my best interest because other treatments could help me

more.

1

I asked to be referred to another hospital where I enrolled in the Resonate-2 trial 1

I did not g et a direct yes or no but I could tell my doc was not crazy about the idea. 1

I don't know why you would want to be part of an experiment. 1

I have WM so I am always waiting for the next treatment. I keep on top of trials althoug h in

Canada there are very few. are

1

I may be too old 1

I researched on my own and found the study at the NIH that I participated in before needing

treatment. Which led to a clinical trial at NIH. I went throug h 3 doctor's here who were not willing

to treat me as a patient if I was g oing and being seen at the nih

1

I was not elig ible 1


T otals 10 2

39

I wasnt elig ibile 1

If I needed to do so it would be sug g ested 1

If you can find one! (no MPN specialists in Hawaii) 1

Initial treatment, not time yet 1

It wasn't necessary at the time. It was wait & watch time. 1

It wasn't necessary for rig ht now. 1

Let's see how you are doing 1

Let's try meds first 1

My doctor said my diag nosis was so odd that there were too few patients with like symptoms to

make any trial participation meaning ful

1

My oncolog ist said he would check with the staff. I've sent applied and been excepted for a

clinical trial at VCU Massey cancer beg inning in January 20 20 . Just not sure if I want to just g o

with the first front line treatment or do the trial. My doctor made no recommendation.

1

No appropriate trials available 1

No trials available 1

Not elig ible 1

Not in our city 1

Not much available 1

Not required and why ? T hat's a last resort anyway ! 1

Not something I should consider at this time 1

Not yet. 1

Ok g o ahead 1

Ok to do 1

Said they did not see any open trails but these were only in the Kaiser health system 1


T otals 10 2

40

T EST DAT A, medical team responded 1

T hat mig ht be a g ood option for YOU. 1

T here are effective drug s and since I was responding well, I should continue with my drug 1

T here are many trials g oing on now but you're doing fine on imbruvica. Not broke so don't fix. 1

T here are no clinical trials in the area or country (Canada) 1

T here aren't any available but I found one that I hope to be a part of. 1

T here isn't any trials g oing on in our area 1

T here was no trial at the time that I was able to participate in 1

T here were currently no trials where I would qualify. 1

T here were no active trials being done 1

T here were no current trails in South Africa at the time. 1

T here were none close 1

T here weren't any I could g et in. 1

T hey didn't know of any 1

T hey provided paperwork to trial 1

T hey responded saying that there were no clinical trials for me and then said you're the fittest of

my patients, why would you want to do those trials?

1

T hey were not thrilled with me g oing to MDA 1

T old not needed yet—on chemo then T KI 1

Vanderbuilt has several drug trials g oing but because of only having one kidney and pass

medical issues I am limited to trials

1

Very few if any exist for my cancer 1

We are a long way from g oing there as of now 1

We will discuss trials later! 1


T otals 10 2

41

Why would you want to be part of an experiment 1

Why would you want to participate in the unknown when the established treatment is working

perfectly for you.

1

Why would you want to travel so far to do a trial? 1

Would be determined if and when I need treatment 1

Yes we do trials but that was it. 1

Yes, they had heard of, in my case, CAR-t therapy, but that was it. I was on my own to explore it

for myself. T hey were all for stem cell transplants.

1

Yes....only if relapse occur 1

You think you are sick now? 1

Your condition is too early. Watch and wait. 1

"Don't come back to me, I don't want to know about your trial. (It's real, not joking ) 1

appeared to be something possible for in the future 1

assistance in g etting me connected to the institution doing the trial. 1

first doctor not interested and discourag ing , second was on board 1

have to do FCR first 1

if you want to, be aware of the committment 1

maybe later 1

my condition is controlled with current treatment 1

no clinical trail in our country 1

no follow throug h but refered me to clinical trials.g ov 1

not elig ible 1

not here 1

nothing available 1


T otals 10 2

42

nothing is applicable 1

showed me a buliten board with out dated trials posted on the wall 1

skepticism 1

that they didn't know of any trials that would be relevant 1

there isn't currently one for my stag e of Cll 1

they didn't think it was necessary. 1

up to you. Do your search. 1

was not a candidate @ this time & possible in next 2yrs I could be applicable 1

watching and medication chang es 1

we hear about them from time to time 1

we'll g et back to you about that. 1

T otals 10 2


No, I did not bring it up because Count

didn't know I could 2

never considered the topic 2

5 1

Ag ain just didn't think about it until now. 1

Ag ain, location- we live over 4 hours from Boston 1

As above 1

As far as I understand T reatment at this time would not help. 1

Because I fig ured the docs would let me know about any trials 1

Because I was just diag nosed at my last appointment 1

Because venclexta seems to work, so far 1

T otals 156

43

Current treatment appears to be working with side effects that aren't currently bothersome. 1

Currently no symptons 1

DIDN;T KNOW ONE WAS AVILABLE 1

Did not know about it 1

Did not know about them. 1

Didn't feel comfortable doing it. 1

Didn't know enoug h 1

Didn't know if I would qualify 1

Didn't know until a while into my diag nosis 1

Didn't think of it 1

Didnt know what to say 1

Do not need treatments yet 1

Doing well 1

Don't need it yet or ever. Don't know 1

Following their lead and advice on treatment 1

Had me we thoug ht about it 1

Here in Colombia there isn't clinical trial. 1

I am at Penn and they will offer if they think I need to consider it 1

I am in Dr. Richard Silver PV Data study 1

I am not being overseen by an MPN Specialist. T here is none in my city. 1

I am seeing 2 different oncolog ist 1

I am still in worry and wait. 1


T otals 156

44

I am trying to use their expertise 1

I assumed they would bring it up. 1

I can not do a clinickel trial because l am to ill 1

I did not feel it would work for ET 1

I did not know 1

I did not know about them 1

I did not know if it was applicable to me at this time 1

I did not need it. Medicines working well 1

I did not want to participate 1

I didn't feel like I was being treated as a person and was pretty much just a disease. 1

I didn't know about them 1

I didn't know about them. 1

I didn't know that their was a need for patients. 1

I didn't know there was any options like that avail I thoug ht it was chemo or mo 1

I didn't think about it 1

I didn't think it was an option at that early stag e 1

I didn't think of it 1

I didn't want to risk being in an untreated g roup 1

I do not currently require treatment 1

I do not know if I am at that stag e 1

I don't know much about them 1

I had surg ery and then T arg etted T herapy 1


T otals 156

45

I have been receiving venetoclax and rituximab and responding well. Also, none of the trials I

have read about seem to want people my ag e (75).

1

I have dementia. 1

I just didn't 1

I never thoug ht of it. T here was complete faith in my Dr. 1

I never thoug ht to ask...since i am not a dr 1

I thoug ht I didn't know enoug h 1

I thoug ht that if it were important or relevant the doctor would have mentioned it 1

I thoug ht they would if they thoug ht it helpful. 1

I thoug ht they would mention it if they were aware of one. 1

I used to follow the clinical trials for leukemia 20 years ag o when my mom had CLL and too

many thing s didn't work out and now that I have CLL I just think that still in my memory, so I am

just distrustful of them

1

I was chang ing medications at the time 1

I was doing well on Revlemid 1

I was in shock and didn't know the questions to ask 1

I was initially unaware of their existence. 1

I was not interested at the time in participating in a trial. 1

I was not ready 1

I was pleased with what they had come up with for my treatment. 1

I was recently diag nosed 1

I was told no treatment was necessary now 1

I was told that wait and watch was my only option 1

I was told the options are limited for treating this illness 1


T otals 156

46

I wasn't aware I should 1

I wasn't aware of the option 1

I wasn't aware of this prog ram when first diag nosed..last December. 1

I would be unlikely to participate 1

I'm apparently not ready for treatment 1

I'm at Stag e 0 , WW. 1

I'm in early stag es 1

I'm in the 'wait and see' period 1

I'm not interested 1

I'm still on 2nd line therapy.. 1

I'm still quite new to this. 1

I'm still responding to initial treatment 15 mg Rev with Emplicity infusion add 1

I'm still working , the chang e that the trail will lead to "not working " is to big . 1

I've been successful on current treatment. 1

Ireland isn't participating in clinical trials (to my knowledg e) 1

It is not a patient's responsibility 1

It never entered my mind 1

It was never broug ht up 1

It wasn't discussed 1

Keep forg etting 1

Knowing there were none in proximity to my home. 1

Lack of knowledg e 1


T otals 156

47

Medical team should offer it to me if applicable because I'm not a medical professional & don't

know what's available.

1

My MPN was being manag ed until it prog ressed 1

My doctor told me the treatment to follow 1

My doctor was willing to prescribe the medication I wanted (Interferon) after I did my own

research.

1

My hematolog ist/oncolog ist has said that my disease presented itself in an uncommon way. No

one really knows what's g oing on, or what to do

1

My oncolog ist does clinical practice only. 1

Never thoug ht about it 1

Newly dx and have not considered it at this time 1

No because Everytime I start asking questions...they blow me off,. T ell me not to worry or we'll

talk about it when you come for your next appointment

1

No information 1

No knowledg e of them. 1

No treatment 1

No treatment available 1

No trials ong oing for ET patients in our reg ion. 1

Not available locally 1

Not aware of trial options 1

Not mentioned 1

Not there yet 1

Not there, yet. 1

Not treated as yet. 1

Not yet necessary 1


T otals 156

48

Nothing in the area 1

Other treatment alternatives were available 1

Peg asys is still working for me. 1

Response to hi is g ood 1

Rig ht now I am in the "watch and worry" phase 1

Sadly I forg ot all to new... 1

See 3 above; FISH g ood and IGHV mutated 1

See previous answer 1

Standard treatment has been effective so far 1

T he FCR treatment seemed like the best course 1

T he option of using the latest fda approved treatment was available. 1

T here are no trials in Sweden 1

T here aren't any 1

T here was nothing available at the time. 1

T hey acted like DCIS was nothing . 1

T oo early in W & W 1

T reatment we are using is working for now 1

T reatments were working . I have done some research looking at next steps when current

therapies are no long er effective and my doctor also g ives me an idea of what I can do next. I

also g o to Stanford on ocasión when I need a chang e in reg ime.

1

Unaware of options 1

Watch and wait at this time 1

We were convinced of this medicine working well and it did for 19 years I've been very lucky 1


T otals 156

49

When first treatment of bendamustine caused an allerg ic reaction they then started me on

imbruvica daily tablets

1

current treatment options 1

did not know 1

distance 1

i didn't think of it 1

ig norance 1

long travel miles & time 1

never thoug ht of it 1

no need 1

not the trial i want 1

only considered chemo 1

they weren't my choice place 1

too far along with diag nosis 3l years 1

treatment was working 1

with standard treatment, I was moving toward complete response. 1

T otals 156


7. Have you participated in a clinical research study for your cancer?

50

42% Yes42% Yes

56% No56% No

2% Yes, but stopped midwaybecause2% Yes, but stopped midwaybecause


Yes 42.2% 274

No 56.0 % 364

Yes, but stopped midway because 1.8% 12

T o ta ls : 6 50

51

Yes, but stopped midway because Count

Damag e to my heart 1

Give my blood samples to Dana Farber 1

I developed an allerg ic reaction to the drug . After a few infusions 1

I was having increased cardiac symptoms and other patients developed a-fib 1

I was not responding 1

Side effects 1

T rial was stopped 1

Unable to tolerate side effects 1

became neuturpenic and hospitalized several times due to the rituxan component 1

of serious side effects 1

side effect of BR 1

very bad reaction almost died 1

T otals 12

8. If yes, how many studies?

52

69% 169% 1

20% 220% 2

6% 36% 3

3% 43% 4

3% 5 or more3% 5 or more


1 69.1% 195

2 19.5% 55

3 5.7% 16

4 2.5% 7

5 or more 3.2% 9

T o ta ls : 28 2

9. If Yes, how financially burdensome was it for you to participate in the clinicalstudy/studies?

53

7% Quite financially burdensome7% Quite financially burdensome

27% Mildly financiallyburdensome27% Mildly financiallyburdensome

65% Not a financial burden65% Not a financial burden


Quite financially burdensome 7.4% 21

Mildly financially burdensome 27.3% 77

Not a financial burden 65.2% 184

T o ta ls : 28 2

10. If Yes, do you believe you derived clinical benefit from participating in thestudy/studies?

54

85% Yes, I did because85% Yes, I did because

15% No, I did not because15% No, I did not because


Yes, I did because 84.8% 234

No, I did not because 15.2% 42

T o ta ls : 27 6

Yes, I did because Count

I am now in complete remission and mrd- 2

I'm in remission 2

T he RVD lite trial I went into remission after the 1st cycle, the Bromodomain one totally did s job

on me. I hsd a troponin level of 115 after the second cycle of injections.my blood work was all

elevsted . I still from spring have areas where the injections were that are discolored and lumpy.

T he study was pulled.

2

T rial drug has been working but process has been extremely stressful. Hig h cost of participating

probably a wash with the cost of paying for the drug .

2

...I have been told I am in remission. 1

7 years MRD 1

After CAR-T , my M-spike continues to fall. 1

T otals 230

55

Althoug h not initially randomised to new drug was able to be chang ed to it when orig inal started

failing

1

Am g etting a g ood targ etted therepy reg iment. 1

At the completion of the prescribed treatment period, I was MRD neg ative. 1

Because I am still alive today. 1

Because I g ot the treatment and others benefitted from my results. 1

Because i receive excellent care and have the new drug s 1

Being on this medication really should prevent recurrence or recurrence to advanced 1

Benefit from added T herapy 1

Blood counts have returned to within normal rang e. Lymph nodes have shrank somewhat. 1

Blood counts improved, fewer transfusions 1

Clinical nurse to monitor prog ress ...... direct line to haematolog ist 1

Costs associated with travel to hospital daily and parking costs all added up and on top of time

away from work and family

1

Creates more stable outcome opinion. 1

Currently MRD 1

Currently in a trial. 1

Doing much better, now. 1

Drug approved and no sig n of Cll 1

First PVX trial...never g iven results. 2nd Revlimid maintenance reg ular monitoring MRD

neg ative...deep remission...3 yrs in 5 year trial

1

First T rial...12 year remission Second T rial....MRD Neg ative 1

First one provided a deg ree of control, and boug ht time; and provided a 1 in 3-5 chance of a

low impact effective treatment. T he second one g ot me to MRD -ve

1


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56

First trial provided 2 year remission. T he second trial which beg an 20 14 has resulted in

reaching MRD-Neg in six months.

1

First trial unsuccessful. Second working thus far. 1

Good evidence of benefit 1

Good for 13 months. 1

Good remission 1

Got 5 years duration 1

Got remission for a little over 3 months 1

Got remission in one trial 1

Great initial results 1

Has put my blood and other indicators back in the normal.rang e. 1

Have been MRD neg 6 years 1

Have not rerecurrence 1

Helped make Inrebic FDA 1

Hematolog ic response was g ood 1

Hopefully, I will achieve uMRD. 1

I achieved Complete Response 1

I achieved a long remission 1

I achieved partial response 1

I achieved remission 1

I achieved sometimes a brief remission, sometimes a long er one, each time 1

I always wanted to know if I could g o treatment free so I tried it. Even thoug h I failed the

treatment free I am satisfied that I at least tried it.

1


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57

I am 5 months post BMT and thriving with no issues with GvHD so far. Myelofibrosis appears to

be in remission!

1

I am MRD Neg ative 1

I am MRD neg 1

I am MRD neg ative and off all meds, even thoug h I have 17p deletion. 1

I am alive 12 yrs post diag nosis 1

I am because I landed in the "lucky" arm with a limited treatment time and a possible deep, long

term remission. Study team is amazing , so knowledg eable, and available 24/7 if necessary.

1

I am better and helping others on the future. 1

I am currently still in the trial & the medication is controlling my CLL. 1

I am g oing into deep remission. 1

I am in a clinical trial and have been in remission for AML since March 20 19 at ag e 70 . 1

I am in remission with minimal side effects 1

I am not in full remission. 1

I am now UMRD neg ative 1

I am now in remission 1

I am now not on anything , my numbers are g ood. 1

I am on one now and doing well 1

I am still alive and feeling g reat 1

I am still here 1

I am surviving and hope I contributed to better treatments 1

I believe it helped my remission 1

I can help other MPN patients 1


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58

I did have some issues at the beg inning of the trial but now I'm 2yrs and 3 months into this trial

and I'm doing g reat

1

I did not have to pay for the drug used, and I have had positive results so far. (Neg ative MRD

after first induction, not g oing to stem cell transplant).

1

I feel I am currently benefiting from my clinical trial. 1

I g ot a 3 year remission with minimal sie effects on 1st trial. Second trial was early Phase 1 with

no results.

1

I g ot a real professional as hematolog ist, available by mail, phone, whatsapp, and with

experience on CML

1

I g ot into a partial remission. 1

I g ot remission, became more informed and active participant in my treatment 1

I g ot the armof the trial I was hoping for 1

I g ot the best treatment available 1

I had 4 years of remission 1

I had a very g ood response to treatment and I'm now in the maintenance phase. 1

I had access to an excellent drug and furthered science 1

I had access to best clinicians. 1

I had decided before diag nosis that I Wanted this treatment 1

I have bad markers, knew my outlook was not g ood. 1

I have been in remission for nearly 20 years. 1

I have been in remission for two years. 1

I have been in remission from AML for 9 months now. 1

I have responded to treatment. 1

I have seen improvement 1

I helped to find out if Shing rix and Hepatitis vaccine works in CLL 1


T otals 230

59

I knew little about my cancer, and nothing about treatments, effects on the rest of my body,

prog nosis and ways to help myself improve my quality of life .

1

I participated in the Elevate trial with obinutunzimab and acalabrutinib combo... acalabrutinib was

approved as a results of this and other trials

1

I reached MRD status 1

I received a new effective treatment with fewer side effects 1

I received the targ eted therapy with few side effects 1

I received treatment with a drug that was otherwise unavailable and to which I responded quite

well

1

I seem to be doing g reat 1

I seem to be in whatever qualifies as remission for PV 1

I wanted to help others 1

I was able to avoid chemotherapy which could cause marrow problems 1

I was able to take Ibrutinib and Rituximab for a first trial of medication 1

I was expected to relapse within a short time. 1

I was g iven an effective treatment 1

I was more carefully monitored, my views were soug ht, the treatment seemed effective. 1

I was on ibrutinib before it was approved as a first line of treatment. 1

I went from 6 months to treatment to "no evidence of cancer" on the trial 1

I went into string ent complete remission after starting the last trial 1

I'd really answer maybe. One can never be sure what result I would have had from more

traditional treatment. Nevertheless, my treatment has been effective at controlling CLL but at

the cost of sig nificant side effects

1

I'm able to have some g ood days to enjoy my family. I'm still alive! 1

I'm in 10 0 % remission 1


T otals 230

60

I'm in full remission for five years. 1

I'm in remission 1

I'm in remission so the experimental medication may have helped. 1

I'm mig ht be in complete remission now. For having two hig h risk markers; 17 p/tp53 and

unmutated... I'm thrilled with the results in 1 1/2 years of a combo treatment.

1

I'm still alive and making g reat strides knocking out the CLL 1

I'm still here 1

I'm still involved in the trial 1

I've maintained as NED 3 yrs 1

Ibrutinib phase 2b trial was very promising . 1

Im in a Complete Response, and have had EXCELLENT care during the trial so far. 1

Improvement 1

In spite of serious side effect, CLL is in remission. 1

It g ave me a treatment option 1

It has boug ht my CLL under control 1

It has helped put in remition 1

It has stopped me from prog ressing . 1

It helped treatment 1

It improved my condition 1

It looks into the cardiac side effects of tkis, and I actually experience them myself 1

It placed me in clinical remission for CLL but now it is back ag ain' 1

It provided a very g ood quality of life that I lost because of my blood cancer. 1

It provided symptom relief 1


T otals 230

61

It put me into MRD 6 years now 1

Just started at the end of October but so far the results look positive (reduced spleen size,

stable hemog lobin)

1

Knowledg e understanding 1

Monitoring disease g ot bone biopsy 1

Most of the trials were for straig ht research--g iving blood--will do anything to help find a cure.

One trial was a select treatment plan, picked primarily because it was totally pill based. It g ave

me nearly 3 years of solid results.

1

My CLL responded to the medication. 1

My CLL symptoms have abated and I am doing well 1

My M-spike went to and remained neg lig ible. I am considered MRD neg ative 1

My answers were used to help fellow patients, careg ivers, medical and pharmacist 1

My disease (with 52p) was manag ed for 5 years, with 3 treatments under 2 trials.I had few

symptoms and lived quite normally. After my last relapse I underwent car-t in a clinical trial. I am

20 months out with no sig n of cll.

1

My energ y level is back! Fatig ue had been my main complaint. 1

My markers went down 80 % in 3 weeks 1

My medication, Imbruvica, was approved anD 1

My numbers all improved. I still have a small m-spike 1

My numbers have quickly g one down. My doctor said that I'm now in "T otal Myeloma

Remission."

1

My numbers went down rig ht away. I'm still in it now 1

My quality of life improved g reatly. 1

My spleen shrunk and my blood counts improved rapidly 1

My trials doctors are very well informed about my cancer. 1

My tumors were utterly destroyed 1


T otals 230

62

Neither trial worked but I felt the second trial was influential in keeping my blood counts

acceptable for over a year long er.

1

New drug worked for me 1

New drug s had rapid positive effect, but also caused Richter's transformation, which kicked me

out of trial.

1

Not sure just started 1

One of them was effective for me. 1

One was for a new type of psma pet/ct and two are for an experimental vaccine 1

Only 6 mo numbers are better than they have been in long time 1

Partial response to drug . 1

Patients are followed so closely. 1

Prog ress in treatment 1

Quality of care 1

Reduced PCR 1

Rig ht medication 1

Seems log ical to assume benefits... 1

Some were effective. 1

Still in NCR 1

Still in the study at present. My labs are wonderful at present. 1

Still in trial 1

Still on the trial and responding well to trial drug . 1

T he Care by the clinical trial team was thoroug h 1

T he combo treatment I received was not available outside a clinical trial 1


T otals 230

63

T he cost of the meds were covered and felt there was more attention to me because they

needed the results for the trial

1

T he first two trials weren't helpful, but the third one g ave me over two years of remission. 1

T he therapy produced the expected initial response. 1

T here should be an "I don't know yet" option for this question. I don't know if there has been any

positive effect as of this time.

1

T rial not completed but lab values & spleen size much improved 1

T wo worked but one was a bust 1

Very careful clinical reviews monthly 1

Yes! Because the targ eted drug s continue to manag e my CLL superbly and because I avoided

FCR that, I believe, would have wrecked my 'systems' and left me vulnerable to certain

secondary cancer. Granted we don't know the long -term effects of targ eted drug s, but that's an

adventure I'm willing to take.

1

access to drug s 1

actually had a partial response 1

after 3.5-4 yrs I am MRD Neg ative 1

complete remission, woot! 1

counts doing well 1

counts returned to normal 1

deeper response, no SE 1

did not need blood transfusions reg ularly 1

early improvement in condition 1

extended time between transfusions 1

g ained access to CLL experts for future 1

g ood to excellent response 1


T otals 230

64

hope and been trying for years to g et on a clinical trial now stag e 4 drug s as all new standard

drug s put there not available for people like me. as nice fo not eant to waste there money on

people like me drug s

1

i am in remission! 1

i g et the latest treatment options 1

it became a 1

it became a "g old standard" aproach. I have been in remission for 15 years. 1

it did improve my situation 1

it established what level of CLL I had and was able to treat according ly. 1

it put me in complete remission. 1

it reduced the cancer in four places 1

it was directly reflected in my WBC levels g oing down 1

it worked 1

my doctor encourag ed me since I had no other options. 1

my numbers g ot better, close to remission and halfway done. 1

my recent bone marrow biopsy showed no CLL present. 1

my response was quite complete and long with minimal side effects. 1

my symptoms decreased/ my lab work improved. No side effects from medication 1

my trial drug g ot me to the remission when established chemos could not 1

new improved drug , less side effects 1

new information 1

not sure of out come 1

one study was a double blind for peripheral neuropathy...not sure the benefit as my neuropathy

was resolving (and never told which trial arm I was). Currently in Maintenance trial after

ASCT ...no prog ression after almost 5 years...so maybe?

1


T otals 230

65

receiving care from top doctor in this field 1

reduced my spleen 1

some of the clinical trials helped keep my CLL under control. 1

still alive 1

still on trial but seems to have some benefits so far 1

the FDA approved med led me to be in remission 1

the clinical try I had is g oing to be thenew treatment in Holland 1

the latest one resulted in remission 1

the medication worked for 3 years 1

the one study was about quality of life with CML and g ave the researchers more data. 1

the trial reg imen worked and put into remission. 1

yes and no! i eventually achieved c r 1

T otals 230


No, I did not because Count

Not applicable 1

But I may someday 1

Did not increase time between relapse. 1

I am first being assessed for NIH's long itudial study (I have smzl) so haven't been to NIH yet. 1

I became transfusion dependent 1

I did not respond to the study drug 1

I don't know results 1

I failed the trial because of side effects and had to drop out 1

I had the funds 1

T otals 42

66

I only g ave blood samples for research & was never contacted ag ain. 1

I participated for the research benefits for others. 1

I prog ressed while on the trial 1

I understood that it was a broad survey and did not expect t any imminent personal benefit. 1

I was randomized into the standard of care g roup 1

It had no impact on me. T rial was discontinued 1

It is a long term study. 1

It is to early in the study 1

It was a study of pharmacokinetics, I never learned the results of the trial 1

It was canceled due to lack of effectiveness in the middle of the study 1

Just a long itudinal study 1

MM reoccurred 1

My treatment was not affected by the trial because I was in the control g roup. 1

My tumours didn't shrink much basically kept everything the same 1

Nine offered g ood results 1

No because I relapsed ag ain after 4 months 1

No discernible outcome 1

Not sure...I think it created more toxicity and had to discontinue. Not sure yet how much I felt it

helped

1

One was a written survey. One was a study of g ut bacteria in transplant patients. 1

Only helped short term 1

Results were not disclosed 1


T otals 42

67

So far, no detectable impact on my smoldering myeloma. 1

Studying my blood - why it still caused DVT during treatment 1

T he drug didn't help me 1

T he research results are not shared with the patient. T his too needs to chang e. Patients are

entitled to info even if the info is not actionable.

1

T his is the NIH CLL Natural History Study. 1

T rial not completed 1

T rial results not ready 1

Unknown. 1

abandoned after 1 round BR 1

adverse effects, had to drop out 1

not a burden because between the drug company & my insurance, the balance owed by me

was not a burden

1

the trial ended because the method was not working 1

T otals 42


11. If Yes, did your treating physician believe you derived clinical benefit fromparticipating in the study/studies?

68

88% Yes, they did because88% Yes, they did because

12% No, they did not because12% No, they did not because


Yes, they did because 88.0 % 235

No, they did not because 12.0 % 32

T o ta ls : 26 7

Yes, they did because Count

Don't have answer 2

See above 2

T he first one since I went into remission 2

T hey said so 2

" amazing results" 2

...I was being treated after a long 'Watch & Wait' period. 1

...presume similar rationale to the above 1

11q deletion 1

T otals 217

69

? 1

Able to try other drug 1

Above 1

Ag ain, because my markers went down 80 % on 3 weekd 1

All CLL cells are out of my body 1

All my numbers have improved and I feel better 1

Another g roup monitoring cll 1

Best medication 1

Blood counts and spleen 1

CLL in remission 1

Car t looked very promising 1

Combined Ibrutinib/venetoclax treatment knocked down CLL very quickly. 1

Currently MRD 1

Don't really know 1

Dr Coutre sug g ested the trial and felt I would benefit from this Clinical trial drug treatment 1

Dr says results to date are acceptable but way too early to say there is benefit 1

Eliminated lymph nodes, reduced marrow and blood disease levels 1

Excellent outcome 1

Gained time 1

Going into remission. 1

Good remission 1

Good response 1


T otals 217

70

He could see from the lab numbers (M Spike, Kappa Lamda ratio, Bone Marrow Biopsy) that I

have derived g reat clinical benefit from the Clinical T rial.

1

Hematolog ic response was g ood 1

I achieved complete remission 1

I achieved partial response 1

I achieved remission 1

I am currently enrolled in a clinical trial and only remain on because showing continued benefit. 1

I am doing very well 1

I am healthier now. 1

I am in remission 1

I am in remission with minimal side effects 1

I am in remission. 1

I am more protected now 1

I am responding well 1

I became MRD neg ative. 1

I consider the doctor in the trial my physician now, I haven't g one back to my doctor of initial

diag nosis

1

I continue to be part of the study. 1

I did 1

I don't know 1

I experienced g ood resuts each time 1

I g ot a deep remission from treatment 1

I g rossly outlived my estimated survival. 1

I had a chance to g et acalabrutinib and venetoclax 1


T otals 217

71

I had a complete response to treatment 1

I had a very g ood response 1

I had fantastic results with GA-10 1, now Gazyva. 1

I have been in remission for nearly 20 years. 1

I improved 1

I lived. Best AML. MDS was another story. 1

I maintained g ood numbers 1

I reached MRD Neg ative 1

I reached the status of being clear of CLL in the bone marrow and peripheral blood. My quality

of life improved dramatically very early in the trial.

1

I received a complete remission. 1

I received the arm of the trial that I was hoping for 1

I responded to treatment. 1

I seemed to do very well for 2 ½ years 1

I switched to the myeloma specialist who is conducting my trial, she's thrilled with my response. 1

I think otherwise they didn't advise me to do the clinical try 1

I was MRD neg ative. It will be three years in March since I completed treatment. 1

I was a g ood candidate. 1

I was living wifhout pain and had a normal life once ag ain. 1

I was neg ative for MRD after first induction. 1

I went into remission after participating in the trial study 1

I went into remission. 1

I'm in SCR 1


T otals 217

72

I'm in remission 1

I'm still alive. Functioning 1

I've done well this far 1

Improvement in condition 1

Improvement of blood work 1

It boug ht me more time and increased my options 1

It g ave them another person to try treatment free. 1

It placed me in clinical remission! 1

It was for first line of treatment 1

It was her trial and I was still LRSMM. T here's not much to lose. 1

It was mentioned as an option for me 1

It was successful 1

It worked for nearly 3 years 1

It works 1

Just because... 1

Just reviewed participation and taking some at my facility off the trial but recommended me

continuing on trial because of my response.

1

Kept me shouldering for a year 1

Lymph nodes are clear from the cancer 1

MM markers improved 1

MRD 1

Maintained MRD neg ative. 1

Makes treatment decisions easier 1


T otals 217

73

Marlies results 1

Medicine was without cost, however tests (ECG, CT scans, biopsy, is patient cost. 1

My M spike is 0 1

My blood count g ot better and I was feeling better 1

My blood counts returned to very near normal levels 1

My current numbers are g ood 1

My lab work continues to improve. my node have decreased in size 1

My lymph nodes and labs are almost back to normal. 1

My numbers and Cat scan indicate remission. 1

My numbers are almost in the normal rang e 1

My numbers are g ood 1

My numbers indicated it worked. However, I had a reaction to the study drug and finished the

last few cycles with only the monoclonal antibody

1

My numbers tanked within 3-4 infusions of Isatuximab 1

My response to the treatment was deeper 1

My symptoms beg an to subside. 1

My symptoms subsided , And my percentag e of neoplastic cells decreased substantially. 1

No GvHD 1

Not sure. Still in trial 1

Numbers are better and I feel better. 1

Numbers came down in first trial, but discontinued due to side effects, second trial didn't work 1

Of a prior clinical trial (same treatment, older patients) 1

Of g reat response 1


T otals 217

74

Opening other treatment options 1

Orig inal chemo failed 1

Partial response 1

Quality 1

Remission 1

Remission 1

Results 1

Results have been very positive 1

Results look g ood so far from 2nd trial. 1

Results speak for themselves. 1

Same answer as to question number 9. 1

See above answer. 1

She told me about a year and a half after achieving remission, that based on the g enetic test,

she thoug htnI would havevrelapsed in nine months.

1

So far yes, side effects have been minimal, and my numbers are g reat! T ime will tell if the

hoped for remission is reached.

1

Still not sure not complete 1

Still ong oing but Dr. Wierda is pleased 1

Stopped the cloning and has helped my lab reports. 1

T est results proved this. 1

T hat was the only drug I was taking 1

T he benefit was measurable in one and there was no benefit in the other 1

T he doctor is a clinician and researcher. 1

T he drug was continued 1


T otals 217

75

T he research drug is working . I am in remission. 1

T he second trial My tumors were utterly destroyed T he first trial I was in the controlled g roup

that did not receive the experimental drug

1

T he trail is seeing 10 0 % effectiveness in cll 1

T he trial drug has put me in remission 1

T he trial has been ong oing for a while as I am close to the end of the number of people needed

for this study.

1

T he trial mig ht be of value to me at a later point and certainly would help other patients. 1

T he trial results so far have kept the MM from becoming more active 1

T hey kept me on it until the symptoms reappeared 1

T hey recommended it 1

T hey saw my numbers drop to 0 1

T hey saw the recent tests. 1

T hey saw the results 1

T hey seem to weig h controlling CLL over the side effects 1

T hey spent a g reat deal of time answering the many questions I had, as well as investig ating

how the treatments could be modified.

1

T hey think I mig ht be in complete remission. 1

T reatment is part of a phase 3 study 1

T rial achieved MRD neg ative. We are hoping for along remission. 1

T wo were effective; three were not. 1

Unknown at this time. Neither yes or No 1

We can further the research tog ether 1

Wrote several papers on me. 1


T otals 217

76

Yes 1

Yes as I was able to work full time 1

Yes! And because I avoided FCR, my oncolog ist believes my long -term prog nosis is better 1

Yes, because my MM markers continued to fall. 1

achieverd complete response 1

another set of eyes 1

because I was in trials for over 2 years 1

because of the abatement of my symptoms 1

believed it helped remission 1

blood numbers normal 1

clinicians encourag ed but may be too soon to tell as still ong oing . 1

counts returned to normal 1

deeper response, no SE 1

exceeded expectations 1

extended time between transfusions 1

fast and deep response 1

g ood response 1

improved blood counts 1

it continues to control my CLL. 1

it helped keep my CLL under control. 1

it met our g oal, so far, of lowering and maintaining lower WBC levels. 1

it worked 1

less transfusions 1


T otals 217

77

long er survival 1

my CLL situation improved 1

my hem/onc was quite surprised at the positive response I had. 1

my lymp nodes shrank away and tests indicated no CLL. 1

my marrow is clean and my symptoms improved 1

my recent bone marrow biopsy showed no CLL present. 1

not sure 1

of level of remission 1

of my results 1

provides additional information 1

response 1

same 1

same as last question 1

saw the positive results of the trial meds 1

side effects were fewer 1

still alive 1

the clinical drug is now on the market as an aid to cancer patients. 1

the latest one resulted in remission 1

their clinic was doing the trial/study. 1

there may be a better outcome than standard treatment. 1

they had heard of study and thoug ht it mig ht be beneficial 1

they thoug ht it had promising results so far. 1

they were CLL specialists 1


T otals 217

78

they were able to see any chang es in or levels of the disease. 1

those treatments were appropriate and effective for my particular variant of CLL 1

too early to tell 1

treating physician was my T rial Dr. ( Byrd) 1

yes and no 1

T otals 217


No, they did not because Count

Because I relapsed ag ain 1

Disclose results; have not been treated 1

Don't know 1

Have heard nothing from study of my blood 1

Have not talked with him 1

He never mentioned anything to me. 1

I am still participating 1

I prog ressed while on the trial 1

I was not in it long enoug h 1

It had no impact 1

It was a research trial rather than media action trial 1

Just a study, not a trial. 1

My harvested CD34 cells were contaminated by my CD20 CD5 CLL cells 1

N.A. 1

NA 1

Never discussed my participation in depth with him 1

T otals 31

79

Not discussed 1

One was a written survey. T he second was a study of g ut bacteria in transplant patients. 1

So far, no detectable benefit. 1

Study ong oing still so 1

T he trial failed in their mind. 1

T here was no chang e in fibrosis 1

T hey didn't seem interested. 1

T hey had to take me off it. 1

T hey know research results are not shared with the participating patient. 1

T hey never discussed the trials I participated in 1

T hey never spoke w me about it 1

T oo early in study 1

Unknown. 1

Unsure 1

same as above 1

T otals 31

No, they did not because Count

12. If Yes, how far from your home to the clinical trial site did you have to travel?

80

19% within 10 miles19% within 10 miles

25% 10-50 miles25% 10-50 miles

13% 50-100 miles13% 50-100 miles

42% 100+ miles42% 100+ miles


within 10 miles 19.4% 54

10 -50 miles 24.8% 69

50 -10 0 miles 13.3% 37

10 0 + miles 42.4% 118

T o ta ls : 27 8

13. Have you learned about clinical trials from Patient Power?

81

56% Yes56% Yes

44% No44% No


Yes 55.9% 365

No 44.1% 288

T o ta ls : 6 53

14. If Yes, did you speak to your doctor about what you learned?

82

49% Yes49% Yes51% No51% No


Yes 49.4% 179

No 50 .6% 183

T o ta ls : 36 2

15. What can you share about your journey with clinical trials, or thoughts aroundconsidering participating in cancer research studies?

83

ResponseID Response

21 T EST Data. What can I share about my journey. Q8.

22 the trial must fit your diag nosis that is Why you Need a CLL specialist

24 For me it was all about timing . I needed treatment rig ht away as my CLL was prog ressing

rapidly. My options were to take imbruvica (chemo not suitable for 17p deletion ), until it

stopped working OR fly to MD Anderson, Houston from Boston at considerable

expense to try imbruvica/venetoclax combination in hopes of remission. It paid off and I

am off all meds now trial is over. I am very g lad I did it as the trial has been a big success

so far. I thoug ht the 3 monthly CT scans and bone marrow tests were invasive with too

much radiation and unnecessary, but it was the only way I could g et the venetoclax at the

time as iit was not FDA approved. It was recommended to me by Dr Davids at Dana

Farber and I am so g rateful for him for this.

25 None a yet

26 NA

27 Initial treatment(s) appeared to upset Ulcerative colitis disease process, sig nificantly

chang e metabolic/weig ht status, as well as g eneral energ y level. Limited discussion

between hem/onc and other specialists. Phlebotomy treatments were not presented as

an additional option. Hem/onc did not discuss hig h vs low risk and went rig ht to a

cytoreductive ag ent. As a patient, who happens to be an APRN, I found an MPN

specialist and established with said professional. Much more collaboration between my

other specialists, discussion with myself and other-all making it a palatable experience.

Knowledg e is powder; having that information and educational approach ensures "buy

in" from the patient, decreases mental health burden, and actually g ives the patient

motivation to take charg e of their life .

28 I wish everyone who would like to participate in a trial could .

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30 If no one participates, we will never find a cure.

31 Nothing yet... have not had a g ood conversation yet.

32 I believe that participating in a trial would be most beneficial if my cancer was resistant to

current treatments and I had exhausted all possibilities of having success with other

methods.

34 T o me it seems difficult that the choice of medication is made randomly, you have no

influence if you're the trial g roup or the control g roup. T hat would make me a not

hesitant to participate. Also, I heard about truss that were stopped early because of

fatalities.

36 I would if that was the only thing left to do

37 Open to possibilities, because our diseases are so rare and individual. No g ood

treatments are currently available, it seems...

38 http://healthivibe.com/blog /20 19/11/a-clinical-trial-saved-my-life/

http://healthivibe.com/blog /20 16/10 /breast-cancer-trilog y-of-terror/

https://g ypsumoon.wordpress.com/20 19/11/0 2/cancerversary-celebration/

40 T hey are essential to prog ress in cancer treatment.

41 Clinical T rials can g ive the patient confidence in their treatment reg imen as these are

usually conducted by experts in the field of CML.

42 I believe trials are best for patients who are not responding well to standard therapy

43 I'm all for it! I stand ready to participate any time my doctor sees a g ood fit.

44 My doctor said there were no clinical trials at the time, for myelofibrosis

45 I've learned there are other patients that are living with CML with success of their clinical

trials.

47 I was upset by the number of tests (MRI, Bone scan) which I had to do to participate and

was not financially covered by the trial. My insurance ended up paying @ 85 percent but I

had to pay the rest. Plus, the injections were painful and they put us throug h some painful

and unnecessary injections just to try to cover up whether we were g etting placebo or

real injection. At one point they g ave us a tetanus shot that was VERY painful . It served

no purpose for treatment just for the study (as I said to confuse us whether the shot was

really for treatment or not) Also, they did not g ive us any updates untill the end when I

found out that the trial was cancelled but not why.

48 I am a big believer they always should be part of the discussion.

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49 At this point in my diag nosis, I'm doing pretty well. I have thoug ht about it because

everyone's symptoms are so different, what makes it so? I'm curious.

50 I would have participated if it was offered once my MPN prog ressed. However the

doctors felt that my best option was a stem cell transplant and that it what I did.

51 I looked into them after diag nosis and treatment started, but any relevant trials were

halfway across the country, and 170 0 miles away.

52 Hoping for a crispr trial as I'm g etting too old for travel and to be a complete g uinea pig

53 I would participate in another clinical trial if I ever need treatment ag ain. You are followed

very closely. My trial followed me for over 4 years

54 I learned about the trial from SparkCure. It is a very g ood service. I learned that most Dr.

and even some specialists are not aware of all the trials. T he patient needs to learn and

find available trials. It's g ood to talk to the doctor after you are informed. My primary

doctor finally ag reed that the trial I wanted was low risk and should be beneficial

althoug h it required a larg e time commitment.

57 Financially not compensated enoug h. Some trials ask for too many tests and visits.

Unrealistic.Don't seem to care about side affects that arise and willing to do something

about them. Will not think outside the box for a solution. Rig id

58 I was dxed in 20 0 9...started imbruvica 16 months ag o. No dr has mentioned clinical trial

to me

59 I would definitely consider it but with apprehension. I don't like the "unknowns" with

clinical trials. I also live in a rural area and would fear my local hospital wouldn't know how

to treat any side effects I may have from trial medications.

60 After starting on interferon my doctor advised me ag ainst any trials due to my positive

response to interferon

61 T he whole process was completely worth it. I continue to remain stable so I hope I will

remain like that for a g ood long time. If I had not done the trial, I believe I would have

prog ressed by now.

62 I would consider it but being 75 I don't think MD Anderson or Mayo will consider me.

63 Neither trial benefitted me, but one showed about 1/3 of pts responding so opened up

development for me therapies

64 Even thoug h there are many trials available, it isn't that easy to g et into them. In my case,

I would hear about them after they were already closed.

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65 I am very open to participating under three circumstances: if the established treatment I

am receiving fails OR if it is a new tki with no side effects OR if it is a study related to an

absolute cure or discontinuation of treatment

66 I would definitely consider trails ... When my cancer reserfaces... As not much information

in g athered from the cancer I have

67 I would consider additional trials should it become necessary to chang e meds. It benefits

me and others, including other patients and science. I feel fortunate that Mayo offered

me this opportunity.

69 People who do clinical trials will help find a cure

70 Once I learned I was nonresponsive to my SCT , my Doctor immediately sug g ested the

bb2121 trial. I immediately said I was i interested and he started the insurance approval

and then trial enrollment processes. I am so thankful to my doctor and team at MD

Anderson for working so dilig ently on my behalf.

71 I have considered chang ing physicians and driving several hours to a larg er or at least

more prog ressive center to have the chance to either participate in trials or at least have

a team who is aware of them.

72 Leave time in your consultation with people to look at them and listen. Let them know

about clinical trials they mig ht be elig ible for. Doctors, especially specialist clinicians,

should absolutely be up to date with what's happening within their sphere of clinical

trials. Help enable us to have choices and contribute to cancer treatment !

74 Have to wait and see if there's one available around me

81 I found it was a lot of work to fig ure out what studies are out there. Eventually I found an

NIH list, but even that wasn't too clear. T hey didnt' point me to the long itudial study that I

fit into. I have no idea what other studies are out there. I needed treatment and it was

obvious 4xs Rituxan was the best start, so I stopped looking . But I have really ag g ressive

markers (c-myc, p53) so may need a study in the future.

82 I do not have much information to share, but I will say that clinical trials need to be

discussed with MPN patients. T his disease is rare and doctors need to receive more

education about this constellation of disorders, in g eneral. It is simply appalling to read

posts from patients who describe the misinformation doctors have about MPNs.

83 Well worth doing if you can tolerate it. Every little bit helps to find the rig ht drug s for

everyone

84 Now I know a bit more about my health and have learnt to trust the sig nals my body

sends me I would be more decisive I think.

87 I'm not part of a clinical trial but I do g ive extra blood for my MPN specialist's practice to

study.

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88 Not sure there is anything worthwhile for ET that I have read about so far.

91 I don't have anything to share I haven't done any trials

93 I think it would be very helpful, as just reading stories in support g roups can't be very

constructive and comforting . I think a clinical trial would be even more so.

94 I'm willing to participate

95 Patients need to be more educated about trials . T he opportunities available are not

easily accessible if your oncolog ists isn't knowledg eable or "boug ht" in .

98 Emotionally, as someone who has lost far too many to cancer, a clinical trial is my way of

fig hting back. In terms of care & results, it's a way of obtaining the most personalized

care from the best doctors and careg ivers in the field. Particularly for CLL, with no cure

so far, new drug s are our best hope.

99 I would consider participating in clinical trials such as the ones that I participated in

(survey, g ut bacteria). I doubt that I would g et into a clinical trial involving the latest

treatment as they are very, very hard to qualify for.

10 1 I recommend participating in clinical trials because the patient is followed very closely

and will g et excellent care.

10 5 I haven't beg un yet. I'll have to decide whether I want to do the trial or just beg in

treatment . It's a tractive to me that there would be a possibility of long -term remission

without having to take daily medication.

10 6 I was selected for a trial at Ohio State. I was the first in Ohio in the trial. It's a phase 2 and I

was nervous but I trusted my doctor

10 7 Because I live in a rural area it would involve much travel to be in a trial

110 Nil as the Doc didn't want me to do it .... As the thoug hts were last resort

111 My only experience was with my husbands GBM brain cancer. By the time he ag reed to

a clinical trial it was too late. I had wanted him to join one early on as I knew traditional

treatments would not save him.

113 If/when the time comes that there is a particular treatment that will benefit my conditions

or offer a cure I would be interested. Currently it does not seem the odds are in my

favor.

114 Fearful.. Because of what I've read on my post about others, And people dying almost

every day with this disease.

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116 Unfortunately we discovered during the pre-trial testing that I did not qualify for the trial

so instead, I started treatment. If the currently available treatment was not expected to

help with my cancer I would try a trial instead if I was able.

117 I did not chose clinical trial as it was Phase 1

118 I believe it's a g reat idea. And if it doesn't help me maybe I'm helping somebody in the

future I doing a trial today.

120 Was afraid I would be in placebo g roup

121 All part of 'Educate, Communicate, Advocate'

123 I am still treatment naive. But I would jump at the chance to participate in a clinical trial

and/or research if it can help others with this or other cancers.

126 Very new to my diag nosis so have not had a lot of time or energ y to think about clinical

trial research

127 .

129 It's only been a few weeks, but it's m having a hard time finding studies. And I'm a

research librarian!

130 maybe my clinical trials have been drug chang es due to immune system shutdown and

the next drug reaction being kidney and liver deterioration until Aneg rilide introduced

131 After my diag nosis, I searched avidly online to learn about CLL. I read about clinical trials

early on and was eag er to contribute to research. I was the one who first broug ht it up

and told my doctor I was interested in a clinical trial. I was still in w&w, thoug h, and my

doctor said I wasn't yet ready for treatment. When it was time, she had a g ood study in

mind for me. Fortunately I live within 20 minutes of the cancer center, so the 6 months of

infusions were not a big problem. Overall, I have few side effects and the care I've

received throug hout the study is just phenomenal. I never felt so cared for, medically

speaking . I'm only 7 months into the study but have been very happy with the results so

far.

132 Ig norant about it

134 Very favorable...access to latest treatments, thoroug h monitoring , relieves financial

burden. At MSK access to latest research...options after end of this trial.

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136 My MPN Specialist sponsors several trials and is the principle investig ator in some. But

with his patients he is careful not to overpromise what a trial will do and he clearly does

not want to pressure me to do one trial or another. I very much appreciate that. I am

certainly interested in helping the science reg arding MPNs, but trials are always an extra

burden and an unproven benefit. My primary responsibility is to my wife and family, so I

need to be cautious about entering a trial that is likely to create such an overburden of

testing , journaling and possible side effects that I cannot take care of my other

responsibilities.

138 As a 66 year old, twenty year survivor, I would commit myself to one for the help it mig ht

provide for future patients

139 I know that the current medication that I take do not work very well for me and are not a

viable option in the long run so if clinical trials can prove that other medication would be

better for me and other patients then it would be a win.

141 I feel they are g ood and needed. I'm g lad I participated in one.

142 T he trail leaves no stone unturned. Every side effect and every little sniffle is looked

into. Nothing will g et by the team.

143 It has not been easy. Had reactions to ibrutinib with swollen leg s and feet.

144 It's a win win situation if one g ets g ood results as well as helping in future treatments.

T he second trial showed not prog ress.

145 I would like to know clinical trial results

146 Clinical trials MUST be done or drug s cannot be approved. Plus, you g et closely

watched. I've been in five clinical trials; I'm g lad I could help and I'm still here.

148 It was difficult and frig htening of the unknown however, I felt the benefit, it any would be

g reater. I have received excellent care from my doctor , his team and the CRU nurses.

Any issues that I had were addressed immediately and I have not ever reg ret being in

this trial. When these drug s stop working for me(hopefully it will be a long remission) I

most definitely will search out another clinical trial.

149 If we can participate on a clinical trial as a option, we must seriously think on it, as a help

for new diag nosed people.

150 Moving into my 30 th year with PMF, I have just started Jakafi. Was offered the CPI-1610

trial in combination w/Jakafi but chose Jakafi only.

152 I believe these trials are the foundation in finding a cure

154 Would love to participate in a clinical trial in addition to current treatment.

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155 Getting trial information to patients seems amiss. Finding sone way to inform patients of

new trials would be beneficial - especially those with T ype 1 diabetes and cancer (CML)

156 I'm just in the process of deciding on treatment and PP has g iven me the words and

thoug hts to discuss all my options with much g reat depth of knowledg e.

157 My clinical trials have worked for me medically. I would participate in research studies as

they help me medically and financially. T hey take the extreme financial burden off of me

so that my insurances will take up the rest. I find that a study is, unfortunately , tied to one

medication and it's results, but does cover the other related medical procedures related

to the drug . I would participate ag ain to help advance my care and that of others with our

disease.

158 I take Ibrutinib and it is working . I would consider a trial if needed.

159 I was in the Ibrutinib-Ventaclax trial but dropped out because of the bleeding

complications of Ibrutinib

160 I wish more Dr's and Specalists would talk with each other, even if the patient dosent see

one of them. I wish there was more open communication in the health care field, stop

worring about the money, pplease put the patients health first

161 Would love to have ALL clinical trials listed on one website. Also where and who is doing

the trial. It g ives me an option if I want to travel or not.

162 T hey look promising

163 I didn't have any problems with the first drug - Imbruvica except diarrhea but had to be

hospitalized for 3 days for 3 weeks for the ramp up for the Venetoclax.

164 When (if) need treatment I would consider a clinical trial since it would help research and

other patients

165 I believe I have received excellent treatment and a lot of personal attention because of

my trial participation. I am unhappy with the CAT scan requirements of my trial- every 3

months, too often! I would prefer every 6 months.

166 I believe that you should always look at clinical trials as your first option. T he medication

is usually free and you are helping future patients.

167 Do they do them for blood cancers

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168 I think that clinical trials are crucial to moving the needle forward in lung CancerResearch.

I've seen hundreds of patients that I've benefited by participating in a clinical trial

extending their lives allowing them to live there for us life possible with their families and

friends. Most of us function at 10 0 %. I walk 10 ,0 0 0 steps a day lift weig hts at the YMCA

times a week. I'm so g rateful that I'm here to rock my first g randchild that was born in

March 20 19. At initial diag nosis I was g iven two days to live. T hat was six years ag o

January 20 14. My life has been extended and I am so fortunate that I was tested for a

g enetic mutation. thank you for all you do Andrew. It's g reat to hear that you're a

speaker at this next upcoming meeting . Are they inviting any patients? Patient

advocates? It's g reat to have a mouthpiece for the community such as yourself and we

appreciate you so much. My feeling is that they really need to extend an invitation to

patients to attend this meeting so they can actually see and feel, touch and hear from a

patients perspective. Patients that are actively g oing throug h treatment at this time. T o

see why Biomarker testing is so important. Happy new year Andrew

169 I started my treatment with a trial. Micheal Keating along with his nurse Alice Lynn was

the T eam that looked after me. Great combination!

171 Clinical trials are important if we're to ever defeat our cancer.

172 Be your own advocate. Find out how to make your insurance work. Find a doctor that will

support you in dealing with the insurance. I am able to have a top cll specialist examine

and advise me on a reg ular basis.

175 I just enrolled at one clinical trial. I will send the required papers that include so reports

from my doctor. I will see my doctor in 1 week and I hope she will cooperate and g ive

me the papers I need.

176 T houg ht trial was overkill.T hree different drug s with multiple side effects.How would

you know which one was helping you?

177 After initial relapse, we contemplated a daratumamab related study. But I lost confidence

in my new oncolog ist. I consulted with a new onc in Boston who was able to offer the

Dara treatment outside of a study environment. I am now hoping to either g et into a new

CAR-T trial or remain healthy enoug h /long enoug h for FDA approval of the initial CAR-T

treatment. Also looking at NRAS and BIT E (after CAR-T ).

179 Now at 5 yrs on ibrutinib. At last appt, my dr mentioned the possibility of a clinical trial if I

need to chang e treatments.

180 Cancer research studies are vital in reaching better treatment options or even a cure for

CLL

182 I think it is the most prog ressive way to g o for treatment of a disease that doesn't have a

cure.

183 I would participate in trials that involve exercise and diet.

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186 I wasn't eng ag ed in conversation about them. I had to bring the subject up.

187 I have unmorphed p13 depletion. More clinical trials are needed

188 affordable and an opportunity to try new promising treatments

189 Initial response to the drug was severe but once I g ot thru that the rest of the treatments

were uneventful. Prog ress is not possible without research

190 I'm on at the Acerta trial taking Acalabrutinib and venetoclx combo. My lymphocyte level

went from 250 ,0 0 0 to .6 within 2 months. Hemog lobin and platelets are near normal.

I've had virtually no side effects save some minor bruising on my arms.

191 I think it would be helpful to know what researchers want to learn ie whether drug

efficacy, disease behavior or prog ression, and at what stag es of the disease are they

(most) interested in learning more

192 I have had a g reat experience, and am hopeful that I will have a g reat outcome. T he data

continues to look promising for me. I am thankful to be part of the study.

193 I probably would not do a trial living in the Dakota Outback. It's 20 0 miles to the Dr.

195 I have just beg un to seek treatment. I will need to g o elsewhere as I live on Hawaii Island.

I feel I could benefit from participation in a clinical trial and anticipate traveling to Seattle

for further care.

196 sorry nothing

197 I'd participate because I'd be always under care from very interessed professionals.

199 T hey're is not the time or information available at my cancer center

20 0 Continue to make information readily available so that folks have to dig and dig for the

info.

20 1 After 3 years on Ibrutinib I needed to stop because of side effects - mostly bleeding . I

now need to start treatment ag ain. Dr Choi at UCSD and I discussed another clinical trial,

however because of my drug sensitivity he sug g ested Gazyva Venetoclax. I will beg in

treatment on January 2. In the future I will always consider clinical trials as an option for

treatment.

20 2 One g ets a much hig her level of monitoring and support from the trial team. However,

there is an underlying concern that the doctors will be reluctant to respond by trying a

new therapy that has emerg ed while you were on the trial. Doctors want to g et long

term follow up which may deter them from chang ing the patients therapy

20 4 At the time FCR clinical trial was available to me and I took it.

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20 6 I believe since I was watched very closely i g ot the best of care. Also I do not be,I've my

CLL specialist would have recommended the treatment unless he felt it was a g ood fit.

20 8 T here is an element of fear of the unknown. But at the same time, there is extensive

information provided about the treatment, its possible side effects and risks. My

experience was uneventful in those reg ards and the results were the best I could have

hoped for. T hree years out, I am still being tracked as a part of the study.

20 9 T hey offer us a chance for increased numbers of treatments

210 I'm sure you have often heard the comparison made that it's like being on a roller

coaster...sometimes you're sitting in the front car at the top. You feel excited and

absolutely healthy. Other times you are aware of the impending plung e as you start to

experience the fatig ue, diarrhea or necessity for yet another transfusion, etc. I must

admit that all the medical professionals, but particularly my oncolog ists have been

consistently supportive and accessible. I've never been a person who g ives up quickly,

so I have always believed there are new possibilities if the current treatments beg in to

become ineffectual.

211 T he clinical trial g ive me access to a treatment not otherwise available. Althoug h I had

some severe side effects, I'm still alive five years after diag nosis, when my orig inal

prog nosis was 6 to 9 months. My care at the NIH was outstanding .

214 If like to try if I relapse ag ain.

216 I am a scientist in the Pharma industry so I am a big believer in clinical trials.

217 T hey had varying deg rees of effectiveness. Ineffective ones were cut short. Of the 5 I

participated in, two did not work at all, one had modest success, and two were quite

successful.

219 I trust Dr Kipps with my whole heart. I believe all the researchers have our best interests

at heart

220 I felt fortunate to participate in a clinical trial with treatment previously only available to

relapsed patients

222 My doctor said that he had read about a patient in Houston with symptoms similar to

mine, and, a little joking ly, said any study in which I would be a participant would have a

number of 2 ...

224 My trail worked for me with some side effects. T he trail of Idelisib was cancelled after

two years. i've been taking Ibrutinib ever since.

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225 I am so thankful I was accepted into the clinical trial. My numbers improved quickly and

after 8 years I am still on the medication. T he trip was often arduous for me and

eventually I could not continue in the trial because g oing every 3 months for just a blood

test and superficial exam was too hard on my family and myself. I would have preferred

remaining in the trial if blood tests could be local and only one trip was necessary per

year. T he Imbruvica trial saved my life . I really believe this and was able to continue on

the Imbruvica because it was approved while I was on trial. I wish my information could

be used for research because I have done so well.

226 ET and the MPNs need more research and awareness

228 Because of what I'd learned throug h Patient Power, I asked my CLL specialist about

clinical trials at OSU. She told me about two of the cohorts of a trial g oing on. She didn't

know if it had already been filled. Asked if I was interested. Upon my affirmative reply,

she went to check for opening s. When she came back, she told me there was only one

opening , (in the Acalabrutinib, Obinutuzumab, and Venetoclax cohort) was I interested.

Yes! She felt this trial would be worth all my traveling (60 0 miles one way). It was. I will

be having a bone marrow biopsy next week to confirm if I am in complete remission.

T he trial reimbursed me up to $60 0 for each visit. I still had out of pocket expenses, but

fig ured, if I hadn't g one on this clinical trial, instead started Ibrutinib, the latter would have

been much more out of pocket expense for me.

229 I would be willing to learn more about participating in a study but haven't been asked or

informed

230 Clinical trials are a g reat way to g et advanced care, and pay it forward at the same time.

232 None because I'm at Stag e 0 , WW.

233 I was asked if it was an opportunity would I consider participating .

234 I would consider it if need be. I have learned a lot about clinical trials since my diag nosis

that has contributed to this decision. T here are a lot of misconceptions about clinical trials

that need to be dispelled.

235 None yet

237 I think it's wonderful people are trying to treat MPNs with better, more effective, low risk

solutions.

238 Had decided to participate in trial when relapsed - unfortunately platelet count was too

low

239 since my imbruvica seems to be working I will stick with it. Actually I read about the Mayo

Clinic trial using g reen tea extract so I put myself on it but I was stag e 2 and the

participants were stag e 0 so it didn't help me.

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240 I just started and don't have much to offer at this moment. But what I can say that being in

a trail helps me to feel hope

241 proceed cautiously

242 T hey usually seem to involve traveling for testing and I worry about being in the placebo

g roup. Finally, HU seems to be controlling my counts for now.

244 It was hard to qualify for trials

245 I am very interested in trying a treatment that will help defend ag ainst my CLL while still

being treated for Renal Cell

246 Since starting treatment for ET I have been treated for breast cancer, bilateral

masectomy, and ocular melanoma left eye, radioactive plaque. My sister is currently

battling AML. I will do anything to help research cancer & it's treatments.

249 My experience has been one of knowing many others who have had clinical trials which

were very effective for treating their CLL.

250 I have not had my MM specialist recommend a trial to me as my best option at this time.

T he one I was asked about early in induction was not at all appropriate for me at that

time.I indicated that if Ph.i results looked promising AND the specilist considered it the

best option for me at that time I'd be interested in discussing participating in PH. ii.

251 I think if it is a better outcome for patients with this disease I think it would be g reat. Yes I

would definitely participate

253 I would be happy to do so ag ain with a well desig ned trial that soug ht serious input from

patients.

255 I have not participated in a clinical trial but have learned about them throug h patient

power and I have found out it's not a bad thing

258 I discussed my concern about not being able to participate because of the Allo

transplant.

259 After 7 years with MM and failed stem cell transplant I am thinking about lending my data

for the OPT IVO research and will speak to my doctor after the first of the year.

261 T hey have been very positive and are an integ ral part of treatment at Mayo Rochester

where I receive treatment

262 T here needs to be follow up erase arch once a drug is approved and used by many of

the different side effects. Each person is different and only a handful cannot account for

all. We g et told all the time by dr that our drug s are not responsible for the side effects

,but we never had the issues before starting meds.

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263 Be open to it

264 I participated in a trial having been self-referred throug h a friend. My experience has

been that my doctor wasn't interested in g iving an opinion about another doctor's trial.

His opinion was watch and wait. When I expressed interest he felt it was unecessary, and

didn't g ive a clinical opinion on the other doctor's evaluation of my condition being a

hig her risk of moving to active disease. Overall my choice to participate was mine alone,

based on information from the trial doctors.

266 If I felt it mig ht help me or do me no harm but could benefit others I would happily do so.

267 Clinical trial participation is critical to advance the research. Without patient participation,

trials are stymied. Participating patients should be valued. Financial burden roadblocks

should be removed. Research data should be shared with patient even if info is not

actionable. Patients need to feel they are partners in the clinical trial process and

therefore should be valued.

268 I have been in two clinical trials at Ohio State (the James). T he first was a failure because I

had adverse side effects (uveitis/iritis) from Ibrutinib. T he second trial was the

Obinutuzumab/ Venetoclax trial at Ohio State and I am in complete remission from that

trial.

269 I would be interested participating in a trial if I qualified. It's difficult to learn much about

trials before they start .

270 I did participate in a University of Michig an bone marrow g enetics profile clinical

research but it did not chang e my current treatment plan

272 Mine was very expensive as I was responsible for all testing , etc. only the personalized

vaccine was paid for by the trial. I had to drive 9.5 hours each way to g et to my trial. It

was very disappointing that the primary investig ating physician never bothered to call

and talk with me, ask if I had questions, thank me for participating , etc.

273 I would do it

274 T reating SMM is controversial; so far, I've been std risk, but may be developing HRSMM

or active MM.I'm a cautious person by nature, and remain concerned about risks in a Ph I

or II trial. I also am concerned about where a pt is left after a trial is over and whether a

g iven trial mig ht disqualify me from a future, more targ eted trial. Ex: should I do a trial

involving KRd when what I'd hope for later is a Ph II or II trial involving Venetoclax.

275 A clinical trial was offered to me at the Dana Farber in Boston. However, I live in Florida.

276 Best decision I ever made... to be proactive. Am willing to tolerate the side effects

(driving 70 miles two days a week for treatment, g reat fatig ue one day a week, one

episode of a pulmonary embolism and two episodes of pneumonia) in order to delay or

stop the prog ression of my condition to cancer, ie . Multiple Myeloma.

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278 I was approved for Car t cell when it first came out with National cancer Institute. But then

my numbers were not bad enoug h so I could not participate.

279 Participated in NIH HRSMM trial 20 13-20 15, Revlimid maintenance trial 20 15-present

@ MSKCC

280 I would only do it if the treatments I'm on now failed

281 I would definitely consider participating in clinical trials if/when I relapse, especially if

standard treatments aren't working .

282 I have no experience with them as yet. But I would do anything that mig ht help me or my

fellow patients to find a cure.

283 T hey save lives.

284 Very concerned.. You only have one chang e g etting it rig ht...

285 Would consider it if I'm a candidate

286 T horoug hly research all aspects. I decided not to enter, because (a) I wanted to wait to

g et a sense of my SMM trends, (b) the long -term effects of the oral cancer drug were

sig nificant enoug h for me to wait, and (c) no one could tell me about future drug

coverag e, since initial trial would not be "standard of care," and if after the trial was over,

at some point if it looked like I would need the meds ag ain, would they be covered?

(Expensive drug ...)

287 Working with local oncolog y centers to carry out the clinical trials would allow more

people to participate i think. T he travel is a real problem for some people, especially if

you're still working .

288 I'm thrilled to help researchers study MM and work to find the cure! "Can't wait !"

289 I'm alive because of current therapies that didn't exist when I was diag nosed with

multiple myeloma over ten years ag o. Luckily when I need a chang e a new medication is

revealed and works. I plan on helping others when nothing works for me and I can help

others by being in a study that makes sense. I was a nurse that monitored studies one

time in my career for cardiac medications. I think I understand some of the pressures of

studies and enrolling patients. I think if it is done ethically and without pressure it is a

g ood thing . Patients need to be well informed.

290 I'd like to participate. It doesn't seem that there are very g ood options available for

treatment of my cancer.

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291 Care from my entire study team has been phenominal. All necessary information has

been clearly shared and explained, and all questions and concerns have been answered

very patiently. Responses to phone calls or emails are almost immediate. I feel my health

and safety come first at all times. Care with my cll specialist and his clinic/hospital, and his

study team, has been amazing in comparison to my former doctor and clinic. I feel safe

now. Getting cutting edg e care and treatment, hopefully participation will provide

valuable insig hts for others, and help lead researchers to an eventual cure.

293 Clinical trials should always be considered as a treatment option. Fortunately my disease

has been stable, but at each consultation with my myeloma specialist we discuss trials

that are available if I need them.

294 Hotels and g as can g et expensive

296 It feels g ood to be able to share my experiences. Very rewarding .

298 I am a believer in trying , being optimistic, and participating . We travel 6 hours to Mayo

and will continue as we trust them to the hilt. T o participate elsewhere, we would have to

have that same level of trust.

299 Nona

30 0 Chang e your thinking . You're still locked into an outdated understanding of cancer.

Beating cancer is about chang ing g ene expression - not eradicating cells!

30 1 I would not be opposed to the idea if it was an appropriate treatment for me

30 2 I am g rateful for this clinical trial. It has g iven me extra time with my family. I would

certainly start another if this one stops working . No match was found for a transplant.

30 3 Clinical trials are my only option to be able to beat my type of CLL as conventional

methods don't offer much hope for me.

30 4 T here should be some sort of financial help. My side effects effected my ability to work

for two years yet social security denied me and I couldn't find g rants to help with living

expenses. Clinical trails are so important and yet there isn't support.

30 9 My doctor sent me to a CAR T - cell specialist at the time of my first relapse for

evaluation for treatment and clinical trial options.

310 With recurrent/chronic cancer, can use clinical trials to expand treatment options. If the

study drug doesn't work, approved drug s would still be available to try. Mig ht be able to

manag e recurrent cancer long -term

311 If monies are an issue for some then the trials are a g ood way to help with the costs. T he

Dr does not run the trial on their own. T here are people who manag e the study and

dictate how the study is manag ed. T his can make it challeng ing at times

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314 I would enter another if needed but rig ht now, watch & wait. I would love to do the BiT es

trials

315 I would hig hly recommend participating in a clinical trial to anyone who has CLL.

316 Know as much as possible about your diag nosis and advocate for what you need.

317 I'm a PCROWD participant.

318 My big g est concern is being able to participate since I needed to have the Allog eniec

transplant for the MDS. I still have active MM that is currently under control. What am I

g oing to be able to do if treatment stops working ? Will I be elig ible for trials? Another

Allog eniec transplant? What will my options be?

321 Sorry no answer

322 Will participate if the need arises

324 I am willing to participate in clinical trials and research studies, however I'm unable to

afford travel to mainland. My insurance will not pay.

326 I was accepted into the Juno/Celg ene BCMA Clinical T rial at the University of Kansas

Hospital this past June. I had my T -cells reinfused on Aug ust 28th and have had g ood

positive response. My M-spike went from .92 the first month to .11 after the 3rd month.

327 When I was first diag nosed with smoldering multiple myeloma in 20 14 they were not

treating smoldering at MD Anderson, so starting in the vaccine trial g iven with Revlimid

was the only way I could start treatment which I felt for me was very important; I didn't

want to just wait to have the MM start destroying my bones or kidneys. For me joining a

trial opened a very important door. During that vaccine trial I became anemic which

pushed me to active MM, so I was started on active treatment and then had a stem cell

transplant. I was offered a second vaccine trial around my stem cell where my cells were

harvested and a was created specifically ag ainst my MM cells at MD Anderson as well as

activated T cells that were g iven to me post stem cell. I felt the trial would enhance my

chance of taking my MM to remission. T he results of that trial aren't yet available, but

following my stem cell I was offered my third trial which combined maintenance Revlimid

with elotuzumab. I was only in Very Good Partial Remission following my stem cell, but

then 6 months into my third trial I went into String ent Complete Remission and remain so

18 months later. Luckily my insurance has been willing to cover the costs of the trials not

covered by the sponsoring company. I don't feel that I would have achieved this

remission without a lot more trauma to my body had I not been able to participate in

these trials. T he advancements in the treatment of multiple myeloma over the past 5

years would not have come so far without all the innovative trials. I encourag e all patients

to consider trials in their care if feasible,

328 I would consider participating in a clinical trail - most likely when the "standard of care"

drug s no long er are effective.

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329 No experience

330 When it is time for treatment, I will first try the standard treatment, but would be open to

a trial later down the road

331 I am told that I now have 1 year to 2 years 9 months to live and I only have a 1% chance

of success with sct. My oncolog ist said I have a better chance of ending my life . I haven't

been able to see a MPN specialist, but I was told I could see one after Christmas

332 I will look into clinical trials upon prog ression and hope I will find a further treatment that

will benefit me and future patients.

333 T hey can be a positive experience and the meds are free for the trial. You are watched

closely thru it. Scary g oing into thoug h.

334 Still in trial cll113 europe obinutuzumab Venetoclax

335 clinical trials are not for every patient, but it's worth a try. your physician needs to closely

monitor you and be willing to consult with others, especially if adverse reactions occur

and willing to modify treatment if needed. a g ood physician is the key!

337 My first experience was very beneficial but very hard. Having to stay in a hotel in a

different state was difficult. Cost involved for patient and careg iver was toug h even tho

there was some compensation. Participating in a trial can be beneficial to patient at the

same time helping research. Weig hing out pros and cons can be very difficult but

beneficial as well.

338 I received extra scrutiny during treatment with additional eyes following my prog ress

and helping to make informed decisions about my care.

340 Just waiting till I need treatment hoping that are done in my area. Know some fly to

T exas for trials

341 I have been living with the CLL diag nosis for 8.5 years - I'm in remission as of 11/19, but

would like to be cured. If participating in a clinical trial means I would be one step further

to a cure for this cancer and it would help others, I'm in.

343 I have nothing to lose

344 have not really considered it.

345 My trial combined 2 different iv chemotherapy drug s with the intention of increasing

time between treatment and relapse. Over all the trial did not accomplish the g oal. I still

would consider another trial because they do help patients and future patients.

346 I have been in a clinical trial since Feb 20 19. I am still in remission. I am doing very well

and it was a g ood decision.

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347 It was difficult in that I live a thousand miles away but the trial nurses were g reat and the

people Involved were informative, kind and patient

348 Keep your primary physician updated on the trial and make sure you g et approval from

your insurance company on any costs associated with your participation in the trial

especially for any costs related to scans or lab tests.

349 Carefully consider the end points- both best and worst outcome. how it matches up with

your diag nosis. I also had CLL for 20 years without treatment.

350 I use M.D. Anderson and my trial was #20 13-0 486. (6 months of obinutuzumab and then

GDC 0 199 which is now venetoclax). Started March 20 16 and was in remission app. on

Jan 20 17! I still fly down every 6 months for my blood work. My wife died after I went

into remission by the way. Fortunately money wasn't an issue for me. I love your work

Andrew.

351 Ibrutinib was offered in 2 of the 3 arms of the trial. T ook a chance and g ot it. Still taking it.

T oo many Bone Marrow Biopsies. Very painful and doctor did not need, but trial did.

352 Guess I didn't show any interest.

353 I was very pleased my Northwestern CLL specialist asked me if I'd be interested when

the times comes (that I need treatment).

354 Clinical trials can help both the patient, and future patients, by g aining knowledg e about

what combinations of new novel drug s and therapies are most effective, for which cases.

355 I have been told that I would probably (hopefully) outlive the prog ression of my CLL.

357 I wouldn't have it any other way. Without a clinical trial I could not afford medication.

358 More thoroug h follow up, easy access to the study nurse assig ned to me

359 I have nothing to add.

360 You have attention throug hout the trial and they can adjust the dose and timing to

combat side effects.

361 T he travel, time, and expense and some of the side effects and AE's have been difficult,

but I am still alive and well after 17 years with a fairly hig h risk case of CLL (unmutated,

hig h ZAP 70 , hig h CD38, marrow damag e due to prior I-131 treatment post

thyroidectomy due to papillary thyroid carcinoma

362 Mine was hindered by location and timing

363 I would definitely consider one if there was an opportunity in my g eog raphic area

364 Doctor and staff at Ohio State were first rate and treated me as a patient, not a statistic.

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366 35 years experience

368 T here is an overwhelming number of the very best research people in the world who

are working tog ether to produce therapies that are efficacious, tolerable, durable, and

affordable for cancer patients. T here is also a number of dedicated people who are

tirelessly working to bring the knowledg e of this dynamic effort to the g eneral public

internationally. T here are many opportunities for patients that are diag nosed with cancer

to participate in trials that offer equal or g reater benefit than standard care, however,

the opportunity to win favor with the standard care oncolog y community remains.

370 I'm am still receiving treatment.

371 I have yet to initiate interest in a clinical trial, but very interested in their outcomes and

even more to new ever improving treatments. At this point my interest would be

towards frontline treatments and only after W & Wait is no long er viable. Going on 16

years without any treatment and Lymphacytes averag ing 10 0 for last 5years. Mutated

V-g ene. 13Q

372 My studies were throug h NIH All trials help to move field forward and g ive patients

better care during treatment

373 T he rules are too exclusionary.

374 If the opportunity happened I would participate in a clinical trial. When I had my last

chemo, I heard about one trial g oing on in my city but I'm not sure my case even matched

what the trial was about.

375 I was fortunate to have participated in the two trials with minimal side effects. My

Specialist and their staff were very supportive and concerned over my well being . I felt

that we tog ether were a team. I feel that my participation contributes statistically to the

overall trial results that hopefully will provide positive choices for others when treatment

is needed.

376 T o hard to qualify for trials

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378 Cml is a chronic illness and due to tkis, it has extended our lives g reatly as a result; I g o to

one of the top 5 cancer centres in the world, and I've asked repeatedly reg arding any

new clinical trials (like new treatment remedies or combination therapies), and I've been

told nope none available. I live in Canada thoug h. I know there are some studies being

done reg arding combination therapy with sprycel at MD Anderson for cml patients, but

that is not available for those non-US residents of us. Drug companies are creating

newer tkis I believe, or more like improving the old ones, but it's really hard to join a

clinical trial. I feel like because of the hig h cost of tkis, drug companies (who often fund

research for cml) are more satisfied with their bottom line: money. T hey don't seem to

care to find a cure for us, as the financial incentive is much more g reat for them than

g etting us all off meds. T kis just targ et the existing cells at the g enetic level. T he only

real cure on their part would be to targ et the cml stem cells (prevent them from creating

more cml cells to beg in with) and so far there are few studies being done in the world

reg arding this. What I wouldn't do for a cure to this illness... It's frustrating , that's my two

cents �

379 Patients which will qualify for clinical trials is a wonderful for them, then the lodg ing and

travel enters into the equation. T ravel time of 7 1/2 hours, necessary lodg ing for few

weeks at a time with many check ins with the clinical trial staff, truly complicates the

decision to become a part of the trial...It was a stressful decision to make because of cost

and where to stay. T hat is a major hinderance for patients. So the decision to be made is

the second best choice, which makes one feel really sad because of cost it's a no. T he

choice of a clinical trial treatment for a finite leng th of time and possibly off treatment for

a while or a pill once a day for as long as a patient can tolerate it is the limited choice. At

this time with my poor prog nostic markers my local oncolog ist, atNorthern Lig ht Cancer

Care, Brewer, Maine, says I'm tolerating the Imbruvica well. I'm truly fortunate that I could

wait out the four years to beg in treatment for CLL. I know this is only a stepping stone to

the next treatment, "a bridg e".

380 I am currently on Imbruvica since May 20 19 and have been tolerating it fairly well. My Dr

always says I'm not elig ible for any trials unless my current treatment fails.

381 I will consider participating in a trial if and when my current treatment fail.

385 I was followed very closely.

386 For me, it was my only option, as I had tried most of the traditional treatments that were

available at the time.

387 Difficult when 80 0 miles from Dr.

388 T he trial was expensive, approximately $10 ,0 0 0 a year with insurance Medicare Part D.

389 Did Imbruvia in 20 16, it damag ed my lung s. Now on Calquence and venclexa for my

mantle cell. I g o to West Penn Hospital Pittsburg h Pa and see Dr. Sadashiv

390 It has been my experience, as I would g uess with 'most' of my 'fellow' CLL patients, that

the side effects are absolute 'bears'.

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393 Geog raphy came into play for me. T he available trial was not one I wanted to participate

in (acalabrutinib vs chlorambicil). T he other trials would have required out of state travel

which I wasn't willing to do.

394 MDA has an excellent track record with clinical trials

397 I am a Community member of OCREB and review the ethics in research trials on behalf of

patients so I am familiar with the protocols of cancer research. I am a proponent of trials

that can demonstrate potential benefit. If I understand the trial protocol and the

treatment mechanism , plus if double blinded the possible assig nments, I would consider

participating .

398 You most advocate for yourself to seek further treatment from specialists if current

treatment not working . You must be physically able if it involves distant travel and

financially able to handle additional expenses. It also is a tremendous help to have a

support system.

40 3 I was accepted for clinical trial at MD Anderson with ibrutinib and venetoclax for CLL. On

monitoring my blood in prep for trial, numbers fell out and bone marrow biopsy

ordered. Diag nosed with APL., hospitalized, followed by 8 months of arsenic trioxide

and Atra. Went into remission on APL with no detectible CLL.

40 6 Not much

40 7 I did not share the info from Patient Power as I had already had my SCT before I joined

this g roup. I have always been thankful for having the opportunity to participate in clinical

trials. I even participated in one during my SCT with the hope of keeping the

inflammation of the org ans down during the. He only and radiation.

40 8 It is a burden to live your life around the trial schedule, as well the financial cost. I

expected to be treated better by my team as I felt I was making sacrifices for their

scientific studies.

411 T he momelotinib trial worked wonderfully for me. Being platelet challeng ed, I was

unable to participate in the jakavi trial and this was all that was available at the time. I

would consider a trial if those conditions arose ag ain.

415 I am more than willing to participate in research for this disease but I do have a g ood

hematolog ist, whose treatment and explanations seem to match what I learn from this

website.

416 I would participate it any trial I qualify for. You never know the trial drug mig ht cure you

and if it did maybe it could cure a lot of people

417 It would be a last resort.

418 I received excellent standard of care and enjoyed the research process. I would love to

participate in a trial now as I'm about to start treatment ag ain.

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419 Clinical trials are a vital part of the research necessary for testing new drug reg imens. As

a patient I am part of the community that has the opportunity to support research. I feel

that it is my responsibility to contribute to the support of research.

420 I am 10 0 per cent for clinical trials whenever possible in helping research for a cure and

helping the patient achieve remission

421 T his disease is so very difficult to treat. I appreciate the drug studies, some have help

and some have not helped. With each study, successful or not, a clearer picture of my

malig nancy unfolds. T hat picture helps my specialist understand more about the eng ines

that drive my malig nancy.

422 I did this before and sent a picture.

423 We cannot take control of Multiple Myeloma unless we are willing to take chances and

explore new options.

424 Would like to participate, but not possible here in Sweden.

425 It's quite a leng thy process to participate but worth it for myself and for future of others

426 Clinical trials can be pivotal to the health of the individual and of the CLL community --

both short- and long -term. It is vital to educate ourselves and participate. I would hope

that those responsible for desig ning clinical trial protocols consider the side effects of

medical tests, like scans, with an eye on bettter balancing the needs for information with

side effects of the test. Considering the cost of ong oing treatment and the cost of

medication, I would so appreciate that the patient pioneers who tested the drug in a

clinical trial be g iven the drug free for as long as it is effective. As one of the first to test a

specific drug , if not the first, that benefit seems appropriate.

427 Just started. T hankful for the opportunity to benefit from the trials

428 I considered a trial for GVHD because I'm g oing to be having SCT and the donor they

found is not a perfect match

429 N/a

431 I have benefited from both trials I participated in.....absolutely no reg rets. I chose to do

this in order to hopefully benefit myself, but also in order to help in the treatment of

CLL/SLL.

432 Since I am quite young for the cancer that I have and the cancer is relatively rare, I

received the best care throug h a trial.

434 I have learned a lot from patient power about the new treatments available and the new

drug s coming .

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435 I am currently in a trial with Dr. Brian Hill at Cleveland Clinic. It is still ong oing . It is with

Ublituximab, Umbrilisib, and Venetoclax. Getting ready to start the Venetoclax in

February.

437 Ability to receive cutting edg e treatment and help other patients throug h the research

results.

438 T hey scare me. Feel like I would have so much anxiety over it.

441 None

443 I received FCR in 20 0 5 and achieved remission. In March 20 15, my disease had

returned and I started participation in an Ibrutinib plus rituximab trial. I dropped out of the

trial early, Feb 20 16, due to developing severe AFIB. Every time I prog ressed up to the

full dosag e, I would experience AFIB. In the previous 65 years, I had never experienced

any heart beat irreg ularities. I still have the AFIB on a roug hly monthly basis. T he AFIB

has been a major nuisance, however the Ibrutinib did reduce my white count levels to

"normal" plus it reduced the size of my lymph nodes. It has been effective for 5 years.

Per my doctor at MDA, I expect to have to utilize Venclexta within the next year or two

as my disease prog resses.

445 nothing

446 Always participate as soon as possible in trials

447 have always considered them to be the last resort.and still do. Nothing learned.

448 I don't think I will consider clinical trials, but Imbruvica has worked for 3 years and I can't

say with certainty what I will consider in the future.

450 My experience was that the trial treatment was evaluated well and had g ood prog nosis

before the doctors recommend it to me. However, althoug h the odds were g ood that it

would work, there was also a chance for Lysis Syndrome (did not happen) and for

Richter's T ransformation, which did happen. T he CLL was eliminated, but it transformed

into Diffuse Larg e B-Cell Lymphoma, which popped up in several places (including in my

heart),and was very difficult to eliminate. Expert surg ery and amazing radiolog y at MD

Anderson saved me three times.

451 I checked with Dana Farber for a 2nd opinion and consideration for a spot in a trial, but

was not elig ible.

452 I was offered a second trial when the first ended which added Venetoclax to the

Ibrutinib, with the possibility of stopping treatment after MRD- which I achieved in 9

months. Always be looking for the next treatment options.

453 Besides saving me some money on drug s, I was able to compare my situation with

others my ag e who were in the same treatments as I was. I was able to ask doctor about

other results from patients in same situation as my own.

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454 Well worth considering especially Phase III, if available. All trials may be worthwhile and

should be considered.

455 I would participate in order to have access to novel ag ents also to g et medical care that I

wouldn't g enerally g et otherwise

456 Clinical T rial 1 It was an interesting but disappointing experience. I moved to Seattle for

2 months for a stem cell harvest that failed. Clinical T rial 2 I was recruited but I turned it

down because I thoug ht it was an awful idea..radioactive antiCD20 ! Clinical T rial 3 I tried

to enlist but was turned down due to a confounding cryog lobulin.

458 My thoug hts are when I need treatment the studies that are available to me maybe what

I need.

459 I would need have failed all other meds and it would need to be at least stag e 3 trail

460 My clinical trial at a teaching hospital provided personalized treatment, individual

attention, constant monitoring and the opportunity to receive cutting edg e drug s and

combination of drug s in a phase 3 trial... I could ask questions and receive answers

immediately from professionals whom I felt were knowledg eable and trustworthy.

462 I've been waiting for several months to g et into a clinical trial at MDA. My cancer has

prog ressed to the point that I don't think I can wait for clinical trial that has been pushed

back until at the earliest March.

464 When I have talked to my doctors about new treatments they have always have g iven

me the feeling that they weren't worth doing or were not real knowledg e about new

trails. I feel I bring up new treatments or information, and they dismiss it When I asked

about MRD they aren't interested in finding out where I am with my treatment, but blood

work has been ok

465 T rials are very important now & for future patients. I've been interested in the new

treatments since diag noses in 20 0 0 . I've g iven your website to my oncolog ist & she

found your site very informative.

466 Clinical trials are not for everyone.

468 I just don't think about them. I don't know why probably because I've been watching wait

for so many years and just started a Ibrutinib which seems to be what doctors sug g est is

the thing I need With my unmutated 13 Q 11 QCD 38 markers

470 WONDERING IF I WOULD EVEN BE A CANDIDAT E

471 I have a friend with cll who fears being a "g uinea pig ". If I were the kind of friend to arg ue

with her, I would say that I g ot better care and more scrutiny as a clinical trial patient than

as a standard of care patient. Perhaps that's unfair to say of my doctors... Also, I fancy

that every tube of blood taken from me, every test I take, is furthering manag ement and

or cure of the disease, which makes me very happy.

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472 I think if you g o to a big cancer Center they have plenty of clinical trials. You need an

expert oncolog ist there to select the one best for you. Your local oncolog ist who is not at

a big Center may not know what is available

473 I believe the mutation of T Cells that I learned about back in Mirco years ag o would be a

cure.

474 Someone else participated in a study and I received the benefits. I am g lad to do the

same for others.

475 It's so vital to cancer research. Without trials research and prog ress would slow to a

crawl. Clinical trials move the ball forward for everyone.

477 Clinical trials are an important part of treatment for ANY patient. It aids in research and

helping current and future patients.

478 Not being aware makes me feel I missed opportunities- I have learned that since I've not

done trials or a transplant I can participate in trials g oing forward.

479 I read quite a bit about this car-t study and that was my only hope of prolong survival

480 I would be interested in participating ag ain when I need treatment. I have no problem

traveling if not too burdensome. I believe participating in clinical trials benefit me and all

MM patients

481 Valuable for you and newly diag nosed patients. T he only way to create new treatments.

Plus, very careful monitoring of your health during the trial. Always felt very safe-so

important for cancer patients-and had the opportunity to receive the possibly most

effective new treatment. I'm a fan of clinical trials!

483 My doctor prefers to wait until current options cease working before considering trials.

Currently he is g athering info for restag ing .

484 I would certainly consider participating , but one would have to be able to do it with their

local oncolog ist

485 Nothing at this time.

486 I joined the CPI-0 610 Jakafi (Arm 3) trial at the end of Oct. Althoug h the trial was

explained, I didn't fully realize how much of a time commitment it would be on my part.

Of course, if the combination of drug s improves my disease, it will be worth it! I used to

think that clinical trials were for end stag e disease but because of your experiences,

Andrew, I have a different view of clinical trials now. My husband is a hug e support and

attends every apppointment/test with me. Needless to say, this disease has affected his

life as well (cancelled travel plans, time commitment, worry)

487 I have never qualified for one; I have CLL AND MM

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488 I am hoping to g et into a clinical trial since I just relapsed postSCT 8 months ag o. It will be

challeng ing because I live two hours from an available facility. I wish my local oncolog ist

could participate.

489 It has to be rig ht for each patient. Patients need g ood information on pros and cons.

490 Althoug h my clinical trial with pembrolizumab yielded no detectable benefit to me, I

would considered another trial. T he problem for patients is that once you participate in

one trial, you are often inelig ible for a second trial. It's like you are damag ed g oods at

that point. One and done! T he exclusion criteria for drug trials almost always exclude

patients who have already received an experimental drug from an earlier trial. It's a

bummer for patients who want to keep g oing on clinical trials when the first trial they

participated in yielded no benefit.

491 I think there is certainly not enoug h information out there for patients to help find

research studies. I sig n up for surveys and studies all the time; I've only declined to be in

1 type of study that collected my data into a data repository that I wasn't comfortable

with its potential use down the line. I would not have known about clinical studies and the

one trial I enrolled in without having my doctor tell me.

492 Do not want to do a clinical trials

494 I think patient should definitely be their own strong advocate...and also if offered a

clinical trial do some of your own research (I was offered an ASCT trial and after

research decided ag ainst it... but I later accepted two other clinical trial that were offered

me (one for peripheral neuropathy and one for a maintancence trial...I thoroug hly

researched both before accepting .

496 When I asked my doctor about a clinical trial i was advised I would have to relapse first.

497 Because so many trials require a measurable spleen or proximity to a larg e cancer

research center nothing is appropriate for me rig ht now

499 I had been throug h all the test including another bone marrow biopsy and the day I was

to start the drug I was rejected because the bone marrow discovered I had a insig nificant

CLL. Just enoug h to keep me out of any future trial.

50 0 I believe that clinical trials are extremely important in finding a cure.

50 1 Get input from experts and follow their directions if you feel g ood about what you hear.

Get educated about your specific cancer.

50 3 Hopefully starting a clinical trail after 2 years on Jakafi ,I have to tick All the boxes to

become a candidate,the trial drug is navitoclax so I have my fing ers crossed.

50 5 Awareness of prog ress ...... g ood communication. Peace of mind

50 6 I feel that the study Is following my prog ress so very closely.

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50 7 Yes of course.

50 8 At first scared of idea but after attending conferences realize it's tg e way to a cure

someday

511 It was something I thoug ht about immediately after diag nosis, althoug h I was

asymptomatic then. I watched the upcoming trials and when it came to time for treatment

I asked for a referral to a hospital that was running a trial I qualified for.

512 I would consider a trial. I periodically look at what is available.

513 I have not participated

515 I always thoug ht of clinical trials as " end of the rope" Kind of thing . I'm becoming more

open the older I g et to many different kinds of thing s in life including clinical trials.

Althoug h I am on hydroxyurea, I am concerned about the possibility of the disease

prog ressing to AML...So chang ing treatments is definitely on my radar and I am more

open to clinical trials than ever before.

516 I am not to "treatment stag e" yet.

517 I am very interested in clinical trials, especially for the newer forms of interferon. I prefer

to be proactive so it bothers me that hydroxyurea is not doing anything to help stop

disease prog ression. Most doctors I have spoken with are still reluctant to try interferons

and g iven the expense I need a doctor who is invested in helping me g et coverag e from

insurance. I am on the young er side with small children and as I plan to live many more

decades I am terrified that more years with this cancer means more time for it to cause

complications and prog ression.

518 Mine was easy. No side effects.

520 White blood count reached 20 ,0 0 0 went on a reg iment of 60 0 mg of g reen tea extract

presently at 850 0

521 It has been very valuable for me. I may becoming resistant to ibrutinib now and am

looking for another clinical trial.

522 My experience with the trial I am on is very favorable. I am currently virtually symptom

free. I have g ood support from the Research Nurse assig ned to me.

524 I am currently on Peg asys, it's been working for me and hopefully for a very long time.

For now, I am willing to participate if they need me for Peg asys research since I'm on it.

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525 When I told my local hem/onc that I was seeking a second opinion about starting

chemotherapy the first time from a cancer center in Houston (MDACC), and from a

leading researcher (Dr. Keating ), he advised me to follow any advice I g ot from Dr.

Keating because he was the ultimate expert. My own research had indicated that more

than 90 % of parents with children diag nosed with leukemia opted for clinical trials for

their children, but adults were much lower for themselves. I chose to follow the advice I

received at the research center and it resulted in a tremendously positive experience. I

would do it ag ain if presented with an opportunity. But, I believe that I probably would

want some sort of risk/benefit analysis.

526 Worth participating as long as constant checkups

528 T he CAR-T trial was intense and has side effects that can be unpleasant.

529 I am honestly conflicted. I would be more cog nizant of the stress of travel to distant study

location. I would make certain that my "local" treating physician be more willing to

participate in understanding the trial drug , willing to explain and advise. However, I do

realize that the "local" physician is in a difficult position, but I have felt very alone

navig ating the process without having an advocate looking out for my best interest, to

feel less like a Guinea pig at times.

530 I am honestly conflicted. I would be more cog nizant of the stress of travel to distant study

location. I would make certain that my "local" treating physician be more willing to

participate in understanding the trial drug , willing to explain and advise. However, I do

realize that the "local" physician is in a difficult position, but I have felt very alone

navig ating the process without having an advocate looking out for my best interest, to

feel less like a Guinea pig at times.

531 Its been helpful because I had the sense I was doing something for myself and others

with he disease

532 Benefited from clinical trial because locate oncolog ist was prepared to g ive a 40 year

old treatment.

534 I have often thoug ht that patients should be treated earlier, before the disease

completely destroys the immune system. I would be interested in a study that treated

patients earlier than the current standard.

535 I've been doing well even with 17 p for last five years. So no need

536 My journey with my current clinical trial has been g reat. I have primary insurance to cover

all the extra tests that are required so it has not been a financial problem. I am concerned

about a future trial when I only have Medicare.

537 I wasn't elig ible for a trial, but I would still consider it if I relapse.

539 T o g et more info

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540 T hey rock - My experience is that they are developing targ eted drug s that attack the

cancer while minimizing neg ative effects to healthy cells.

542 I would consider to advance research on my desease

543 I would absolutely recommend participation in a clinical trial. I have been in several

Phase 2 trials, where access to the trial drug was assured. I would consider participation

in a Phase 3 trial provided that the trial allowed crossover to the trial drug for those who

did not respond well to the comparison drug .

544 I'd had no prior drug experience other than initial chemo. It took much long er to adjust to

a drug reg imen than anticipated. I did not expect side effects that occurred.

545 I will wait and when treatment is needed determine with discussions with my doctor the

best approach for me

546 I find them on internet but sometimes don't understand them.

548 I am currently midway on the combination of Imbruvica and Venetaclax. T he trial is g oing

g ood and I currently feel better than I have felt in 3 years. Due to my low immune system

I came down with Crytococcal Viral Meneng itis within 2 weeks after starting the

medication. I spent 3-weeks in the hospital at MD Anderson. After release from the

hospital and approx. 45 days to let my system rebuild started medication ag ain at a

reduced doseag e due to the fluconazole I am taking for the Cryptococcus. I would not be

alive today if not for Dr. Wierda and MD Anderson and the trial.

550 Always trust your g ut. I was offered another clinical trial but I did not want to g o that

route. It felt too risky for me however in the end, I did not qualify. And now I feel more in

control of my destiny if I am ever offered something else down the road. Do your

research and ask questions. Make the doctors answer ALL your questions before hand.

551 My impression is that clinical trials primarily targ et patients who have exhausted all FDA

approved treatment plans. If and when I g et to that point I will pursue the subject.

553 Really concerned if it will shorten my life expectancy or cause more burden and

Sideeffects

555 With my markers, hope lies in clinicl trials. I wouldn't be here without them.

556 In my view, a clinical trial offers the best care possible for cancer treatment. T he only

challeng e for me is to choose which trial to participate in.

557 I may consider it more when i am only responsible for myself

559 Do not have info to provide an answer

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560 My trial experience is what allowed me to g et clean for my BMT . I was out of options for

established chemo treatment and I feel my participation in my particular trial saved my

life

561 Would be interested but need more knowledg e

563 My doctor talked me out of it as he is concerned that I would not be able to handle the

side effects

564 I have CMML and there are no trials available

565 I think it's g reat to be in a trial so that others can be helped and my body as well.

567 My first oncolog ist was in ag reement in 20 17; T FR lasted 5 months. I restarted Gleevec

and became undetectable ag ain within a year. My MD passed away in 20 18. New

oncolog ist dismisses my adverse effects, refuses to try dose reduction or consider PK

lab quantification.

569 Lab results, side-effects, etc., are g iven more careful attention than those of patients

underg oing standard procedural treatment.

570 Sorry i not participating just that i was a er patient..i did lumpectomy surg ery &

radiotheraphy...is it safe for dcis er patient to conceive ? T q

571 Have not pursued other trials since responding well to the one I am on. Initially I was very

skeptical to ag ree to trial but have learned you are fortunate if healthy enoug h to be on

one.

574 Clinical trials offer additional treatment options for us. My fifth clinical trial has resulted in

remission for now. We myeloma patients are always in need of additional options.

575 I know it's a g ood idea. It seems there has not been one for me. T he myeloma has been

in g ood control for 2-1/2 years, praise God.

580 I would do it over ag ain.

581 I am now smoldering ag ain. If my numbers were to g o up, I would ask for another trial

582 - g et a second opinion from a specialist hospital! - ask questions - dr. are busy, but you

are the patient - make them answer your questions and concerns - talk about quality of

life issues - especially those that keep you from feeling like a normal person - fatig ue is a

very big deal - they know about it but don't have g ood cure for it - talk to a cancer

fatig ue expert

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584 In 20 0 9 I participated in a clinical trial at Mayo clinic. At the time I had failed other

treatments and my Dr. discovered an on g oing trial that I could participate in. T he trial

used a combination of Rituxin, Compath, Pentostatin, and one other drug . It was over a

three month period. It put me in remission for 4 yrs. I will be g oing off Venclexta in June

and will look at trials after tests for MRD,

585 Sig n up for one. T he care received is fantastic.

586 I have learned the importance of asking questions about the monoclonal antibodies used

in the drug . What are the side effects and benefits of particular drug . I especially like that

there is no cost to me for the drug . I understood early on that CLL drug s are very

expensive.

587 My first run was time consuming as I a 3 day reg imen once a month. T hree trips to the

hospital in a week once a month. T he second that I'm in now is more about the side

effects of the ibrutinib that I am taking .

588 While finding a potential treatment for myself is always a major consideration, the

thoug ht of participating in "something big g er" to possibly help the Myeloma community

is also present.

589 Would depend on my condition. If HU beg ins to fail then other options would be

considered. Also MPN experts are not at my local Cancer Center (Stevenson in OKC) so

distance and number of trips is a factor.

590 Study in which I participated was reg arding CLL familial research; also sig nificance of Zap

70 and other g enetic markers. If I ever require treatment, I most certainly will consider a

clinical trial.

592 With MF there's nothing for me yet. Hoping

593 I had Rituxan first and relapsed in months. I then had Dr. Keating 's 3 chemo cocktail. It has

put me in a long remission, about 17 years now. T hey are using the cured word. Since

my Dad died of CLL, I am enjoying whatever this period of time is. I owe much to Dr.

Keating and MD Anderson!

596 I trust my doctor and, if he says it would benefit me, then I would likely participate.

597 I initially had a very neg ative view of clinical trials. Based on the timing of my disease and

drug approval, the only access to drug s that made sense was a clinical trial. After

research, it was clear that these drug s would become the standard of care but had to g o

throug h the trial process. I have no idea how often this type of timing happens. But in my

case, I went from thinking of a trial as being a lab rat with the result being a complete

g uess to it being the best way to access cutting edg e solutions.

60 0 Was in a trial for NINLARO and MM returned after about 9 months. However I don't

know if I was receiving the drug or was in the control g roup. Was happy to participate

and hope it helped the study.

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60 1 Ultimately I decided it wasn't for me mostly due to the log istics of participating . T here

want a trial close enoug h making it very very time intensive for me and my caretakers.

60 2 I sig ned up for one in Vallejo CA online and never heard back.

60 3 If my current medicine stopped working , I would certainly consider a clinical trial.

60 4 My first clinical trial that Dr. Michael Keating recommended was Campath shots with IV

Rituxan. T hat seemed to work. My second clinical trial was with Revlimid. I was on a 10

mg /day dose of Revlimid for about a week and had a heart attack and kidney failure. I

had developed tumor lysis. My body was overwhelmed with too many dead cancer

cells. I didn't even realize I had a heart attack except for the cardiac enzymes. My

kidneys came back after several rounds of dialysis. Revlimid was a bust for me because

it almost killed me! My third clinical trial was with Ibrutinib. Ibrutinib worked well for four

years keeping my CLL under control until I developed AFIB. Doing CT scans ever six

months was a pain! I stopped taking Ibrutinib in the summer of 20 15 and was

cardioverted in December of 20 15. My CLL was g etting out of control in the summer of

20 16 so I had to do something . I had a choice of doing IV T herapy or g oing on

Venclexta, I chose taking Venclexta, not in a clinical trial, because it was approved for CLL

by the FDA. I've been on Venclexta since the summer of 20 16. Venclexta is the only

drug that I have taken that has improved my differential! My initial dose of Venclexta

was 50 mg /day for three years. In May of 20 19 my dose was raised to 10 0 mg /day

because my differential was g oing the wrong direction. I have been fortunate to be on a

low dose of Venclexta. It's my understanding that the normal theraputic dose of

Venclexta is 20 0 mg /day. In summary over the last 16 years living with CLL I have been

throug h the mill! Bottom line I'm alive and have a g ood quality of life . T hank GOD for Dr.

Keating , Alice Lynn APN, Dr. Jackie Broadway, and all the folks at MD Anderson!

60 6 T oo early (been on trial for only four months) to have an opinion on the value. I am

please it was offered as an option, however, versus W&W with hig h risk (markers and

ag e)

60 8 I believe clinical trials are important for prog ress in cancer treatment. I volunteered for

the trial on that basis. Later I found I was in the control g roup, but I remained in the trial.

60 9 I'm only 2 yrs MM, doing g reat! I'm the turtle not the hare! Been g etting better every

week, more than I expected! Both my local onco. here in Fort Myers Fl and my MM

Specialist in at Moffitt in T ampa told me not to worry if this Avenue of treatment fails,

there are many others. I'm 72, don't want SCT , just happy to babysit my g randson ag ain,

while kids work! Life is g reat, and I have read of clinical trials available, but new ones

keep coming up!

610 Clinical trials are imperative for researching drug s, their side effects, and efficacy

611 Am I eleg able ? white cells:4.5, red cells3.5,Platellets:98 ,hemog loban :11.

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612 I'll beg in the NCT 0 3737981 trial in Feb. I will be treated at UT Southwestern in Dallas. I

had interest in another CLL trial at MD Anderson, contacted Nitin Jain. He looked at my

FISH and other labs and thoug ht I would be a g ood candidate. His research assistant told

me I needed to enroll as a new patient which I did. 1-2 weeks after my enrollment, I

received a call from MD Anderson where I was told that my Medicare Advantag e

prog ram denied coverag e. (MD Anderson was out of network but I have out of network

coverag e). I called my Medicare Advantag e insurance and they told me that they had not

denied coverag e. I called MD Anderson back, spoke to someone in the insurance area

who indicated that my Medicare Advantag e insurance company had not really denied

coverag e, my insurance company refused to sig n some document required by MD

Anderson. I asked the insurance person if I could have a copy of the document but they

refused. I called my insurance company about this 'refuse to sig n document' situation and

they could find no record of it. I then contacted the MD Anderson patient advocate

office. I explained the situation to her and she said she would investig ate and call me

back within 3 days. After 2 weeks, since I had not heard from her, I called back. She said

someone from insurance was supposed to call me. I told her that I had received no calls.

She said she would look into it and personally call me back. I never heard back from her.

Since I had found the NCT 0 3737981 Cllinical T rial, I decided to stop pursuing the MD

Anderson Clinical T rial. Since I had heard such g reat thing s about MD Anderson, I was

extremely surprised about my interaction and lack of followup on their part. I realize that

this had nothing to do with the medical team, but the problem resided somewhere

between MD Anderson insurance department and my Medicare Advantag e prog ram

Insurance company. And the lack of responsiveness from the patient advocate was very

surprising

613 T houg ht it would be interesting and anything to help this disease.

614 I hope to be in a trial soon, depending on how I do on Ibrutinib

615 Would be interested in pursuing , however also believe I may be at the upper limit ag e-

wise, as to possible acceptance. (85 & continuing w&w)

617 It's hard to say. In my experience, it really depends if the hospital is participating in trials

or not.

618 It's nice to read and hear about the trials before you have your treatment yourself In my

case there wasn't any experience with the combi treatment I have had.

619 I would if my Dr thoug ht I should. I am now on w&w. I wish there was a cure for CLL

620 My doctor thoug ht it had a g ood possibility of positive results.

622 what I've learned is 1) need to be much more vocal advocate for my own care and 2)

need to find a specialist asap

624 I joined the triplet trial in 20 10 which turned out chang ing the standard for most new

patients. No stem cell transfer. still in remission.

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625 Not sure if it was a clinical trial I was a part of or just research. I think providers should

share these more with patients. When I've looked up clinical trials, it isn't easy to fig ure

out which, if any, I could participate in.

626 You really need to ask a lot of questions and than ask some more. Realize you are not in

charg e. Lots of testing sometimes I believe overall

627 Would like to see a spot lig ht on women and clinical trials as well as minority involvement

and outcomes. T here isn't enoug h of a focus on these two g roups.

630 I have no problem trialling if I'm suitable/for my lifestyle at the time

633 My clinical trial was a challeng e, but worth it because I am now in my 6th year since being

diag nosed with AML

634 I was not elig ible for any of the national trials because of the 17 p delay. Found a local

trial at Dana Farber and it has worked so far. Dana Farber is a g reat place . Staff are

wonderful.

635 It's a g ood thing for research of MPN. We have to keep trying

637 I am just starting a clinical trial, so am not able to answer questions 9 and 10 .

638 I liked the fact that I was more closely monitored while participating in a clinical trial, than I

was after relapse and not in a trial. I would participate ag ain, if the opportunity arises,

especially knowing that if I don't respond to treatment, I will be switched to the standard

of care.

639 I thoug ht a trial would take too much power from me. I would be randomized into one

g roup blindly, without being told which medication would be g iven to me.





642 I did not need to speak to my doctor about clinical trials because he had already

recommended one for me to participate in. I had faith in my doctor's belief that this trial

would be of benefit to me. T he possible side effects were thoroug hly explained to me.

However, adverse effects have been minimal. I have already shown sig nificant

improvement. My hope is for a g ood remission. Patient Power and learning what other

CLL patients have experienced and/or are currently g oing throug h, is an inspiration to

me.

643 Na

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644 I read Protocols very carefully, discussed w/ 3 of my docs all of whom ag reed with my

initial impression that I didn't want to be the first pt. on the top dose in a Phase I trial but

would be interested if the drug proceeded into Phase II AND the doc considered it my

best option. When I turned down that trial the MM specialist lost interest in me at once so

I suspect there was a financial incentive to enroll pts.

645 Ireceived increased attention more than the normal tests more frequent

646 I was diag nosed in 20 0 8 with multiple myeloma and told that I had a life expectancy of 2

years. I participated in multiple trials-initial chemo combinations and an auto stem cell

transplant followed by an allo stem cell transplant.

647 Glad to know they are learning About and researching CLL. Someday I may need to

participate in one

649 Overall it has been a very positive and enlig htening experience. I feel the level of care I

am receiving as a participant in a clinical trial is way more substantial than I was

experiencing before the trial. It has helped me financially by drastically reducing

treatment costs. I have met or virtually come in contact with some of the most awesome

volunteers, support g roups and medical professional during this journey who have

positively impacted my and my family's lives.

650 Brining in a clinical trial saved my life .

651 I know I am not a candidate @ this time;but would like to learn more information about

them

652 Undecided

655 I am more informed. Dr. Keating was a g reat persuader but I am now much more

cautious and less likely to just hop on board and say, "Why not?". I g ot neuropathy from a

Jakafi trial and it took almost 2 years of constant pain to recover.

656 My big g est concerns related to location initially, but there is now an appropriate trial

open at my location should I need it. T he other big consideration is determining the

number of scans and other tests that may or will be necessary because it is a trial.

657 Don't know much about them

658 Add to knowledg e base, helped and was not a burden. Risks were worth it.

659 We were told that any of the 3 trials that my husband mig ht have received would still be

g ood alternative to doing nothing . However we found out that traditional Ibrutinib and

monthly immunog lobulin treatments would be covered by our insurance.

661 T oo far to g o

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662 Just introduced to Patient Power. I and my wife read many medical studies, particularly

about connection between PV and PAH since I was also diag nosed with PAH seven

years ag o after T reatment for PV since 1992, and share these with our hemotolog ist

who is open to new information.

663 Clinical trials are important to pave the way for a cure.

664 I felt I g ot the best of care during the clinical trial. I unfortunately developed Richter's

T ransformation -Hodg kins variety so have been treated for that and thus didn't avoid

chemotherapy.

666 I think clinical trials are the best way to g et the best and latest cancer fig hting drug s and

also as a participant in a trial, you know you are helping the prog ress of cancer treatment

not yet available to current cancer patients.

667 Depending on the condition of my myeloma If I ran out of standard of care options I'd

look for a study.

668 I believe that I received more personalized care by enrolling in the trial that I

participated in.

669 T rials can be a blessing . While one put me in the hospital, twice. It was still an opportunity

for doctors to learn more and me to g etting cutting edg e treatment. My doctor just

retired from Georg etown University Hospital which scares me as he was the one

bring ing in new trials. T here is a hug e hole there now. I would not be alive today without

these trials.

671 As stated? I woii UK LD like to learn more about DCIS to share with others.

674 I would have continued on trial if FDA/drug company had not halted trial. Patient needs

to understand risk/benefit ratio as much as possible.

675 I beg an Imbruvica rig ht after FDA approval had rapid heart beat experience, dose was

lowered, 3months later had skin cancer, 3 months after that breast cancer..!!

676 very fortunate to live near UCSF

679 Will consider if current treatment stops working

680 I am considering participating in another. I had hoped for a Car T but I have learned

there may be cardiac involvement. I already have AF and arrythymias from previous PE. I

think I would like to try a Bite, but they are not available nearby. I know there is one with

something like Cerebon? , but need more info.

681 I am considering participating in another. I had hoped for a Car T but I have learned

there may be cardiac involvement. I already have AF and arrythymias from previous PE. I

think I would like to try a Bite, but they are not available nearby. I know there is one with

something like Cerebon? , but need more info.

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682 Daily thankful to God and for all the medical researchers and medical professionals who

have helped in my treatment.

684 I'm 10 0 % behind participating in clinical trials. How else can there be any prog ression of

ending disease without trials.

685 I am very pleased to have been on the ACE 0 11 (Sotatorcept) trial as it has extended

the time between transfusions, offering a g reater freedom in enjoyment of life .

687 T wo big g est concerns are the effects of multiple CT scans during the trial and what my

treatment options will be if I relapse after the trial.

688 if you g et a chance of clinicall trial ho for it as thereis always hope

689 Currently a participant in Ibrutinib Venetoclax combo trial. Results are g ood. Would

recommend to others. T his is my first treatment. Will consider participating in future trials

when/if treatment required.

690 Clinical trials create breakthroug hs in treatment like the T arg etted thetapy i'm g etting

rig ht now for the specific mutation i have.

691 Current trials are restrictive reg arding patient conditions—e.g ., car-t not widely available

for patients with kidney damag e.

692 Produced g ood results

693 Always participate in a study. 1. you are closely monitored (Health) 2. opens up many

more Opportunities In treatment options. 3. T akes away big part of financial burdens.

694 It has been relatively painless process. I would not have participated if I were not actually

receiving active drug . I am not terribly motivated by the thoug ht of helping the cancer

community or patients to come in the future. My focus is more selfish.

695 I felt like I was a part of something g reater than myself, like I was helping my fellowman

achieve victory over a hideous and cruel disease. As they say, cancer sucks and I g ot a

chance to fig ht back.

696 I believe patients have the ability to further research and help themselves at the same

time

697 I will be willing to explore. I am adding integ rative treatment currently to latest tki

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698 I could have received treatment closer to home at UT -Southwestern rather than travel

the 30 0 miles to Houston. I received excellent care at M.D. Anderson but I'm weary of

the traveling . Janssen has been chang ing the travel reimbursement rules and shifting

more of the expenses to me. T he clinical trial followup period may last another 6 years. I

can receive my follow up care closer to home at much less expense but I'm trying to

support the research. I need Janssen to keep their commitments reg arding travel

expenses if they want me to continue traveling to Houston for followup.

699 It was a roug h few months at the beg inning of the trial. I live 86 miles from the hospital

and sometimes I had to g o once or even twice a week. After the first few months it was

cut back to once every 12 weeks. Next year I will only have to g o every 6 months. I only

had mild reactions to the drug s. Following the protocol of the trial the drug s have

eliminated all the CLL cells from my body. I'm staying on the drug as long as I receive

benefit. Last year I was diag nosed with a Pancreatic Neuroendocrine T umor. T he tumor

has not shown any g rowth since I have been on the trial drug . I may end up being patient

#1 on a trial to see if this drug does effect PNET s or NET s in g eneral.

70 1 In the fifteen years since my dx, I feel that the the clinical trial concept, at least in the

Myeloma setting , has actually started to underg o a paradig m shift. Clinical trials are no

long er looked at by many patients as pure research, but rather as treatment with a not-

yet-approved reg imen. T his trend makes the patient much more willing to participate.

T he reason I think this shift is happening is the perceived safety of participation in trials,

as well as the fact that new drug s have been relatively plentiful and readily approved.

Even with the Venetoclax deaths, that bubble didn't seem to burst. At least not yet.

70 2 I want to try the trials looking particularly to find help for this fatig ue.

70 3 My Oncolog ist sug g ested a clinical trial when my first targ eted therapy was failing .

Unfortunately one tumor showed shrinkag e in the pre-trial CT so I did not qualify.

70 4 I am deeply indebted to my oncolog y doctor in my town who pursued and g ot me into a

clinical trial for my chronic leukemia as I wasn't responding to reg ular treatment...I was

lucky enoug h to be involved in clinical trials at James Cancer Center in Columbus, Ohio

with Dr John Byrd and while on the trial the drug was approved by FDA, which was

named Ibrutinib

70 5 T he patient's chances of participating in a clinical trial that has the g reatest opportunity to

benefit overall treatment prog ress AND my personal treatment of CLL is directly

coupled with the doctor's insig ht and access to trial options and reg istration

70 6 I think it's very worthwhile to participate. When it g ets to the point when I need treatment

I will address it with my doctor. I do participate in the Million Veterans study and NIHs All

of Use study.

70 7 I dropped out of mine due to side effects. T he team did everything they could to make

me feel better. T he care was beyond g reat. Even thoug h I dropped out I'd try another

one.

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70 8 I'm just about ready to start treatment and my CLL specialist said I was perfect for BR or

his clinical trail of I O vs I O V. I have an appt to further discuss this next week. From

everything I read, I want the V arm and not sure I want I - rather A. T hanks so much for

g iving me the knowledg e to ask questions!

710 Happy to consider any trial

711 My thoug hts are if I join a clinical trial it mig ht help me or another patient!

713 I'm very supportive of clinical trials, but at the same time I am scared to participate in one

unless it's absolutely necessary - ie , if current treatments fail.

716 T he research team g oes above and beyond to anticipate my concerns, provide me with

data and meet my study related needs. I have a personal nurse who's walked beside me

from day 1, and who's always available to answer questions and problem solve issues.

I'm midway throug h a one year study, and have felt well informed and cared for

throug hout. My hope is that, for a little inconvenience and discomfort, (much of which

would also accompany non-trial treatment), I can potentially help create data that will

someday effect treatment options for my kids/g randkids, should this heredity disease

affect one of them.

717 New technolog y and affordable

718 When I found this study the early results indicated that the drug may have an effect on

the underlying disease. It was the only ag ent that had showed that kind of result at the

time

719 Read all you can & discuss thoroug hly with oncolog ist & primary care or other trusted

careg ivers. Process is very scripted so be prepared to follow set schedule &

instructions. When my insurance co. balked at covering scans, study sponsor stepped in

& paid, so look for help with unforeseen issues.

720 Dr. John Byrd at Ohio State is extraordinary in research as well as patient care. His

development of Ibrutinib and its successor drug testify. Althoug h I did not personally

receive the study drug , I am g lad to have participated in treatment and follow up.

721 After bad side effects from imbruvica, waiting to g et into clinical trial but sick now.

Looking forward to be a trial.

722 It is so important, even if it does not bring us to the final g oal of full recovery, It will for

futur patients

723 It is important to find out if the hospital or medical center used has balance billing . If so,

you mig ht want to find one that accepts what insurance pays for the items not in the trial. I

had to chang e from one center to another the insurance considered "in network" in

order to proceed with a trial.

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724 I was part of a Immunatherapy trial with Ofamatummab several years ag o as a front line

treatment. Put me in MRD and have not been treated since. DX in 20 0 9.

725 One trial worked. One didn't.

727 even thoug h the side effects can be brutal when you are faced with the fact the cancer

has spread to four places and there is hope the trial will help you decide what is best for

you

730 be very proactive. do not take no for an answer, ask more people

732 Clinical trials are usually supported by Big Pharma who many times choose hig hest

tolerated dose. Which with today's science is unthinkable and makes some patients think

Freekanomics is at work. T o little is done to personalize dosag e and one size fits all

(same dose for a 20 year old male 330 lb linebacker as a 84 year old 130 lb woman.) is

ludicrous. First do no harm is not always honored in practice of oncolog y. With some

physicians and Big Pharma the practice of oncolog y is a license to kill.

734 Very difficult to qualify for trial

736 T otally uninformed l need to understand more about it

737 Doctors were helpful. Live in two different states. I was on a trial for one year, nine

months in one place and three months in another. I was happy to have the opportunity to

participate

738 no doubt interesting

739 no doubt interesting

740 Having a support system was very important to me. I received encourag ement when I

was down and was akways accompanied when traveling to my doctor appointments.

741 I'm just finishing up Chemo Radiation for Stag e3A lung andeocarcinoma. I will beg in

Imfimzi in February. My Molecular T esting didn't reveal g enetic markers, however

Cancer Care NW and my Dr. Samuel T olman are not positive about trials

742 Be careful of the risk.

743 T he trial experience has delivered a fantastic outcome for me and I am most g rateful for

the opportunity to participate. My only g ripe would be that I sig ned a Patient Information

and Consent Form at the beg inning of the trial which outlined the T &C's of the trial. Much

to my surprise and chag rin the T &C's have been chang ed along the way and I can either

accept the chang es or be booted off the trial. I naively thoug ht that the T &C's I orig inally

sig ned, would prevail for the duration of the trial.

744 Carefully study benefits & burdens including side effects of trial.

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124

745 I accessed travel reimbursement from Lazerex foundation because I was very

resourceful. Still difficult to miss work and travel impact on my family.

746 Very hard to qualify for trials

747 My support for additional info and research has been IMF and Spark Cures.

748 Clinical trials are essential for advancing treatment, patient care, and diag nostics

749 My trail became Ibrutinib

753 Have been following car t cell research for many years where it beg an at the university

of Pennsylvania.

754 If I could possibly help just one person, it would be all worth it. My mom had a lung

disease that she lived with all her adult life , she completed numerous trials, just to

possibly help hers. I was so proud of her and I know that she would be proud of me.

755 All research are many miles away.

756 I just read the information and I am considering asking if I am a candidate

ResponseID Response

16. In what age group do you belong?

1% undefined1% undefined

1% 30-39 years old1% 30-39 years old






0% 90+ years old0% 90+ years old

125


0 .5% 3

30 -39 years old 1.4% 8

40 -49 years old 4.1% 24

50 -59 years old 17.1% 10 1

60 -69 years old 41.3% 243

70 -79 years old 31.6% 186

80 -89 years old 3.7% 22

90 + years old 0 .3% 2

T o ta ls : 58 9

126

finalpts report for patient perspectives: clinical trials · i believe clinical trials are a way to...

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