Hi @chrissyade19 You have a challenging decision ahead of you with your stem cell transplant options. I’m really glad you’ve reached out to Connect. There are so many of us in the forum who have had either an autologous stem cell transplant (ASTC-using their own cells) or an allogeneic stem cell transplant, which is a bone marrow transplant (BMT) using donor cells…either unrelated or related donor. We each have our own stories to share and hopefully we’ll help you sort through some of the decision making…
I personally had a BMT (matched, unrelated donor) 7 years ago at the age of 65. Like @katgob remarked in her comment above, I also had no other options. It was either the transplant or pushing up daisies from the underside within 2 years. I opted for a 2nd chance at life. I am now 72, cancer free and feel amazing. Minor GVHD issues but those have been corrected and my life is back to normal.
At the time of my initial consult with the transplant team, I was informed about the potential for Graft Vs Host disease and also a mortality risk. The odds of mortality have been greatly reduced over the years. Mortality directly from the transplant is in the single digits.
A transplant using donor cells would give you an entirely new immune system. Often, this completely reverses the auto immune diseases the recipient has been dealing with such as MS, RA, Scleroderma, Lupus, etc. There have been improvements for people with Sickle Cell Anemia as well. Though, from accounts I’ve read and from other members in the forum. Some of the pain associated with SCA may not be relieved right away. You mentioned that your SCA is well managed.
So I’m wondering if for you, trying the auto transplant at this time might make more sense for helping to alleviate your scleroderma and RA. If there is a positive impact from using your own cells, then you won’t have the longer recovery period of a bone marrow transplant. If there is a relapse using your own cells, you’d still have the option for progressing to the full allogeneic transplant using donor cells.
I know you’re concerned about possible side effects and what life will be like post transplant. From having gone through the transplant process myself, I’d highly suggest having a consultation with a transplant specialist with a larger teaching/research hospital such as Mayo, MDAnderson, Cleveland Clinic, City of Hope Cancer centers, etc., where they do a high percentage of bone marrow/stem transplants. There are generally fewer complications where there is a deep bench of experience and knowledge among the transplant teams. Newer protocol in the more progressive institutions have been able to pre-empt the more serious complications.
There can be complications with GVHD, where the donor stem cells react against the new body they are in, (just like an autoimmune disease) but most issues, for most people, are mitigated early in the first 100 days following the transplant or when tapering from the anti-rejection meds. However, there are some patients who do have chronic side effects which can be anywhere from annoyances to debilitating. Though, many gvhd issues, if caught early can be elevated and not everyone has a reaction.
Speaking with a transplant doctor will give you some much needed guidance. But of course, this remains a deeply personal decision. Have you gotten a referral to a transplant center yet? With either transplant, you’d be required to spend anywhere from 4 weeks to 3 months near the facility. Do you live near an area where you have access to a larger facility?
@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.