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I Can't Decide Between Allogeneic or Autologous Transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 26 6:13pm | Replies (7)Comment receiving replies
@loribmt @loribmt thank you for your detailed response. I really appreciate it. I have been going to Mayo Clinic for the last two months, and these were the options presented to me, and they are expecting me to choose which one I WANT TO DO, WHICH SEEMS IMPOSSIBLE NOW. i am about to have my third visit with the hematologist there. My anxiety has been through the roof because I have been agonizing over this. I flip-flop between the two every day. I had the same thought about doing the auto transplant. My hematologist outside of Mayo said he would recommend I do the auto too because it's safer, and it's the scleroderma that's the primary disease. My family wants me to do allo because it will get rid of everything, and I just don't feel like either option jumps at me. i'm just terrified if I do the auto, and if it doesn't work or I relapse, I will be back to square 1. I am beyond miserable right now. If I told you everything I'm going through right now, you wouldn't believe me. Life doesn't feel worth living right now.
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@chrissyade19
My heart goes out to you m’dear, because it sounds like the quality of your life is pretty abysmal right now with the pain you’re experiencing with the scleroderma. I’m so sorry you’re having to deal with that level of misery and the anxiety it’s causing. Thankfully there are options before you which may help alleviate your disease. I’m relieved that you are working with Mayo Clinic. Because having either of the (autologous or allogeneic) transplants there means you are in the very best of care.
You’ve been given the choice of either an ASCT or an HSCT by your doctors. I do a great deal of research in stem cell transplantation and what I’ve found is that an autologous stem cell transplant (ASCT) can lead to significant improvements in quality of life and survival rates for patients with severe scleroderma. It may also hold similar benefits for RA. But most likely won’t change your sickle cell.
Let’s try to work this through together. It sounds like your major concern is alleviating the pain and damage from the scleroderma. Though you also have rheumatoid arthritis and Sickle Cell (SC) Anemia. You mentioned the SC got worse with the onset of your autoimmune diseases.
Here’s a paper from the New England Journal of Medicine. It’s just one of many positive studies on the effect of ASCT on patients with scleroderma. https://www.nejm.org/doi/full/10.1056/NEJMoa1703327
So by having the “relatively” easier ASCT you could essentially kill two of the three birds with one stone. With the ASCT, using your own cells there is no risk of Graft vs Host disease, fewer potential complications and recovery time is faster. The rewards being, if the ASCT is successful as expected, your scleroderma could be a thing of the past. And possibly your RA as well. Which should look pretty appealing.
One of your concerns in the decision making processes is relapse. If you take the ASCT route and do have a relapse you’d be no worse off than you are now. And, you’d have taken a step forward in getting your health back and maybe have had months or years of relief. You would also still have the option of the (HSCT) at a later date. That is more aggressive option, but you inherit a completely new immune system and a potential cure for all three diseases.
In my personal opinion, for what it’s worth, if your main concern is ridding your body of scleroderma, the ASCT is the less draconian option. Having the HSCT would be a last resort because of the other potential unpredictable complications that can occur.
I know you’re not eager to do either of these and the decision has been left up to you. Your doctors at Mayo can’t make that decision for you. But frankly, Chrissy, to do nothing, is to, well, do nothing! Then you’re basically stuck treading water in the untenable position you’re in. So either decision would be a step forward.
Not sure if your hematologist will be able to answer this, but do they feel if you have an ASCT that there would be any impact on having fewer Sickle Cell Crises if the inflammation from the auto immune diseases are gone?