May 10, 2018 at 7:02 pm #36438
Who has participated in a clinical trial? Who has refused? Thoughts?May 11, 2018 at 9:02 am #36441
rarParticipantMay 11, 2018 at 7:32 pm #36443
Wow, Ray….5 trials. Does your doctor recommend the trials? DonnaMay 14, 2018 at 10:19 am #36456
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?May 15, 2018 at 6:17 am #36460
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.May 15, 2018 at 9:10 am #36464
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.May 15, 2018 at 9:08 pm #36477
Cecile……….beautiful post!!May 25, 2018 at 11:18 am #36546
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?May 25, 2018 at 12:45 pm #36548
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.May 29, 2018 at 7:11 pm #36553
I signed up for a list group and they thought I qualified for a nipple surgery recovery program…
Beware of what you sign up for, do your homework.January 25, 2019 at 11:15 am #44996
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.February 20, 2019 at 10:43 am #45143
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.
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