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Struggling with decision to move forward with Allogeneic Transplant
Hi,
I've been reading so many stories and feel humbled and encouraged by everyone. Right now I'm really struggling with committing to moving forward with my allo stem cell transplant. I am 60 and was diagnosed (Dec 2023) with a very rare leukemia (chronic eosinophilic leukemia), so there are no good statistics about outcomes. I am told there is no long term treatment and the only possible cure is an allo stem cell transplant. I have already gotten opinions from heme/onc and stem cell teams at two very good hospitals who recommended moving forward sooner than later due to possible complications of waiting. We were thinking of moving forward with it this Fall, but then the 3rd opinion doctor who is a world expert recommended delaying and monitoring monthly until something changes. After much thought, we still felt it was best to proceed this Fall while I am “healthy” rather than wait and possibly have additional problems (I also have lupus and had HLH), plus concern for it turning into AML. But I find my previous positive attitude is gone and I am now feeling very scared and unable to commit to proceeding, even though I logically know it’s the correct thing to do. I feel blessed to even be given the opportunity to even have the transplant since many CEL patients don’t find it early enough to have the chance, but at the same time I suddenly feel terrified of moving forward. Has anyone else struggled with losing your positive attitude about transplant or struggled with making the decision to move forward with transplant. Thanks for any thoughts you have.
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You will be in the best hands there. Both hematology and transplant programs are outstanding. My husband was diagnosed with high risk MDS about 13 months ago. We were referred to Mayo by his local oncologist and advised tgg gf at SCT was his hope for a longer life. At 74 with many other health conditions, it was no cakewalk. A donor was found and he had the transplant Aug. 22. Lots of twists and turns but we are both very confident we did the right thing.
Good luck to you, keep doing the research and asking all the questions.
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1 ReactionI wept openly when we were told my husband’s only hope for cure of his MDS was an allo transplant. I was unaware of recently advances in treatment. I got a lot of information and support from the NMDP (National Marrow Donor Program) including one on one sessions of counseling. I highly recommend contacting them.
My husband had his transplant in August and while we’ve had “bumps” we are profoundly grateful for this miracle. Best to you.
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2 ReactionsHi Folks,
Long time but following up on this... I'll post more in the DDX41 specific thread but the short version is that, after finally meeting with my doctors at Mayo Rochester, the most advisable course of action is to delay SCT until absolutely needed.
This fits in well with what I've read about DDX41 treatment - particularly for the sub-type of mutation that I have. So, for now, it's a few more rounds of Inqovi to improve my counts (one round has already done some good in that respect). Once there, we may be able to stop chemo and just monitor.
I've also began working with an integrative oncologist to see what other treatments might prove beneficial for MDS. There do seem to be a number of studies done that show promise in areas such as diet, intravenous vitamin c, maitake mushrooms, and green tea. Granted, these all may be somewhat marginal - but I'll take any edge I can get in keeping this at bay.
Of course, my doctors have said that there are no guarantees and that this could still develop into AML, but for now transplant isn't recommended as an immediate action.
To all out there considering or facing transplant, I can't recommend enough that you look for second and third opinions (especially from Mayo). This goes double if, like me, you have a relatively rare set of circumstances. The more rare your situation, the more important it is to seek out those most knowledgeable.
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