Clinical trials

[Beth Stanaland]

Who has participated in a clinical trial? Who has refused? Thoughts?

[rar]

I had a clinical trial for an IDH2 mutation. In two months it lowered my blasts from 15% to 2% which allowed my successful transplant. I also participated in 5 other trials.

Ray

• This reply was modified 5 years, 11 months ago by .

[Donna]

Wow, Ray….5 trials. Does your doctor recommend the trials? Donna

[Jack Millward]

I have been asked to participate in a clinical trial S1612. Three parts (A,B,C). Part C involves a Flip 3 component which I do not have. If I draw this part, they still want me to participate. Side affects are most severe. Why would I want to do this?

[rar]

A person participates in a clinical trial in the hope that they will get a novel treatment that will help with their treatment or will help others. I have participated the latter mainly because the former helped. I am on a drug that won FDA approval on a single trial of 42 people, so a few can make a big difference. Also consider the consent forms say that you are allowed to stop your participation at any time without giving a reason. I opted out of one without a problem.

[Cecile Huston]

I have been in a clinical trial since June 2017 when I started treatment, I have 2 of the clinical trial drugs and 7 Vidaza each 28 day cycle, I am in remission right now, I do have another bone marrow biopsy (my 6th) today so that will tell if I am still in remission, I did the trial so that perhaps it would help me as well as those after me. I am RIPSS 6.5 VERY HIGH RISK. I figured I had nothing to lose, I am now on an antibiotic daily as 6 people died out of 21 on the trials, although none from the drugs, and all in the 1st 3 months, they died from heart attacks, infections etc. I feel it was the right decision for me. I do have to stay on treatment to stay alive as we all know, treatment is not a cure. Only a bone marrow transplant is and that is too risky for me at 75. Life is good. People tell me I don’t look sick, and I tell them I am not sick, I have cancer. I do everything I did before, garden, estate sales, cook. etc, but just slower. For me this works.

[Donna]

Cecile……….beautiful post!!

[Jack Millward]

Just found out I am in group A of trial. Start treatment Thursday with Vidaza drug. If I am 4% blasts or lower, in 6 months they want to do a bone marrow replacement. I am currently 10.5%. Is the replacement normal or too risky?

[diana]

Can I ask how old are you? Less than 65 or older? Age is one factor determines what kind of bone marrow transplant one may get.

[Chris Ballmer]

I signed up for a list group and they thought I qualified for a nipple surgery recovery program…

https://www.researchmatch.org/login/

Beware of what you sign up for, do your homework.

[Paul Dyer]

I was diagnosed in July 2018 with high risk poor outcome multiple mutations including TP53. I am a 50 y/o man in excellent shape at time of diagnosis. I immediately started a trial of APR246 & Azacitidine. After 2 months my blasts went from 9% to less than 1%. I then had reduced intensity allo transplant, with a trial of Venetoclax pre transplant.
I am currently at day +83 and looking forward to my day 100 bone marrow test with both hope and severe anxiety.

[Paul Dyer]

Hi Donna,
I am 50 y/o male, diagnosed with high risk poor outcome, multiple mutations, including TP53.
I participated in 2 clinical trials pre transplant. The 1st was with a drug called APR246 & Azacitidine. The 2nd trial was 1 week of a drug called venetoclax, just before transplant.
I am at day +109 now. I am praying these trials keep me from relapse, which is very common with TP53.
Best wishes!
Paul

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