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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMyelomaTeam Member asked a question 💭
Moorestown, NJ

My concern is that once you enter you’re stuck with it for the duration. Meaning you may be one of the few who don’t make it to the end of the overall survival line.

I want to be able to opt out 2 years later for that new drug bookabookabab and then 3 years later for dinkadeeabab.

Because I want to keep going and expire from something else.

June 2, 2024
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Answer Summary

Members shared deeply personal perspectives on whether they would participate in clinical trials for multiple myeloma, with opinions ranging... Read more

Members shared deeply personal perspectives on whether they would participate in clinical trials for multiple myeloma, with opinions ranging from enthusiastic support to cautious hesitation based on trust, family values, side effects, and access to emerging treatments. Several members who participated in trials reported positive outcomes including long remissions and closer medical monitoring, while others emphasized the importance of weighing personal goals, discussing options with doctors and family, and recognizing that trial participants pave the way for future treatments. A recurring theme was the tension between hope for new therapies, fear of being locked into a trial while better options emerge, concerns about side effects and risks, and deep gratitude for those willing to be trailblazers in the fight against this disease.

A MyMyelomaTeam Member

I entered a clinical trial a week after being admitted to UAMS in Little Rock Arkansas. TT7 and it lasted 3 1/2 years. That was 6 1/2 years ago and I am doing great as is everyone in the trial. Thalidomide in the hospital. Dara, carfilzmed, dex, and Revilimid. It was a trial for newly diagnosed high risk that had not been on any treatment. I would have been dead within 3 weeks if I had not been on treatment. No cancer cells in my bone marrow biopsy.

June 2, 2024
A MyMyelomaTeam Member

Hi Mark,
I am presently in a clinical trail and both the paperwork I signed and the verbal discussion with my Oncologist/ Research dept. is the language and verbal word that I can stop participating at any time of my choosing. Hope this helps
Larry 5

June 21, 2024
A MyMyelomaTeam Member

After seeing what has happened after the Covid jab, I would not do a clinical trial!

June 2, 2024
A MyMyelomaTeam Member

Clinical trials can damage many organs and cause serious complications. That’s the reason you must sign numerous papers not to hold them accountable for what happens to you .

June 2, 2024
A MyMyelomaTeam Member

I’m just afraid that too many of us look at the graph and say, “wow, 50% die after 5 years. I don’t have much time!”

June 2, 2024

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