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Good Morning ☀️I Had The Stem Cell Transplant May Of This Year So Why Am I Still Feeling Pain And Shortness Of Breath?

A MyMyelomaTeam Member asked a question 💭
Brooklyn, NY
August 7, 2023
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A MyMyelomaTeam Member

The goal of a SCT is to provide longer remission. It has been statistically shown that a SCT does provide longer remission than standard chemo/drug treatments. It's not the transplant that kills the cancer cells, its the Melphalan chemo that basically eradicates all of the patients bone marrow. Thus there is zero cancer in the bone marrow because the entire bone marrow has been eradicated. The transplant is to provide stem cells to help regrow the bone marrow.
Like all treatment there is risk and reward and the decision to undergo it is unique for every patient. There are new therapies like Car T cell therapy that are improving and enhancing every day/year and may be the best treatment over SCT soon. This therapy is also leading the research for a potential cure.
If your SCT eligible, research it as much as possible.

August 7, 2023
A MyMyelomaTeam Member

Thanks for sharing this Betty. I had no idea that Dapsone could be this bad and yet so widely prescribed. That's why I highly recommend taking and recording your vitals every day.

January 4
A MyMyelomaTeam Member

I know this is an older post, but I can attest to Dapsone lowering your blood oxygen level. It happened with me after both my SCT and CAR-T transplant. I'm allergic to sulfa drugs so was given Dapsone. I had to stop it both times because of shortness of breath caused by low blood oxygen levels.

January 4
A MyMyelomaTeam Member

CarT therapy seems very promising compared to other treatments available . Seems that after ASCT one is at a higher risk of infection for a while and also the toxicity from melphelan could impact different people differently of course so the side effects could be life altering for some. According to research:
“Early autologous stem cell transplant (ASCT) results in deeper responses and improved progression-free survival (PFS) but no clear overall survival (OS) benefit when compared with delayed ASCT”. A bit confusing I guess.
I really appreciate the collective experience and all who take the time to provide input.

August 7, 2023 (edited)
A MyMyelomaTeam Member

Q. If the majority of transplant eligible are getting SCT then how do we know it’s efficacy? I mean given all the side effects and what one had to go through is the SCT still worth it? And are there any stats showing that it’s as effective as other alternatives?

August 7, 2023 (edited)

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