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Clinical trials

Home forums Patient Message Board Clinical trials

This topic contains 9 replies, has 7 voices, and was last updated by  Chris Ballmer 4 months, 3 weeks ago.

Viewing 10 posts - 1 through 10 (of 10 total)
  • Author
    Posts
  • #36438

    Beth Stanaland
    Participant

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

    #36441

    rar
    Participant

    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 months, 1 week ago by  .
    #36443

    Donna
    Participant

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

    #36456

    Jack Millward
    Participant

    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?

    #36460

    rar
    Participant

    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.

    #36464

    Cecile Huston
    Participant

    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.

    #36477

    Donna
    Participant

    Cecile……….beautiful post!!

    #36546

    Jack Millward
    Participant

    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?

    #36548

    diana
    Participant

    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.

    #36553

    Chris Ballmer
    Participant

    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.

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