I Can't Decide Between Allogeneic or Autologous Transplant

@loribmt Hi Lori, I meant to respond to your last comment but I got distracted. I'm being admitted this Saturday the 15th. I've been wanting this day to come and now I'm 5 days away and I am still feeling pretty anxious and nervous about everything. I don't know why I feel so much fear. This procedure is supposed to give me my life back, so I'm trying to understand where all the fear is coming from or what's it trying to tell me. I've just lost so much from this disease that I'm afraid I won't get them back 💔 😪 I just want to be on the other side of this. I see so many positive stories from other people of who went through a stem cell transplant and they're living their lives again. I'm trying to walk in faith and believe God will do it for me, it's just hard sometimes.

@chrissyade19
Hi Chrissy. Checking in with you this morning to see how you’re doing. I know you’re right in the middle of the autologous stem cell transplant hoopla. I wasn’t sure though if your transplant was this past Saturday or is it coming up at the end of this week?

@loribmt Hi Lori, I apologize for not responding but thank you once again for your detailed response. It made me feel less alone. I did end up making a decision and I'm doing the autologous stem cell transplant, which is scheduled for next week Saturday. I've been feeling overly fearful and anxious when I think about the transplant. I think I've been in such a negative headspace for so long because everything that has happened to me that I feel like I've forgotten how to hope again. I'm a Christian and this has really tested my faith. There are days when I feel like throwing in the towel. I get angry and question why God would allow this to happen to me. Everyone that I've talked to that has had a stem cell transplant have all said it was worth it and greatly improved their quality of life, so I don't understand why I'm struggling to believe that it will happen for me too. I don't know if it's pre-jitters but I'm scared. I have a good team of doctors and they've been great and my family has been supportive, so i think I'm the problem. I just want my life back. I'm tired of walking around with a broken heart.

@loribmt Hi Lori, I apologize for not responding but thank you once again for your detailed response. It made me feel less alone. I did end up making a decision and I'm doing the autologous stem cell transplant, which is scheduled for next week Saturday. I've been feeling overly fearful and anxious when I think about the transplant. I think I've been in such a negative headspace for so long because everything that has happened to me that I feel like I've forgotten how to hope again. I'm a Christian and this has really tested my faith. There are days when I feel like throwing in the towel. I get angry and question why God would allow this to happen to me. Everyone that I've talked to that has had a stem cell transplant have all said it was worth it and greatly improved their quality of life, so I don't understand why I'm struggling to believe that it will happen for me too. I don't know if it's pre-jitters but I'm scared. I have a good team of doctors and they've been great and my family has been supportive, so i think I'm the problem. I just want my life back. I'm tired of walking around with a broken heart.

@chrissyade19
I dealt with anxiety during/after my BMT in January 2026. If you haven’t discussed your anxiety symptoms with your Mayo team, I encourage you to do so. They have dedicated providers to help us through the mental health challenges of SCT and I found them very supportive. I chose to start some meds that made a huge impact on my ruminating and sleeplessness.
Peace be with you!

@loribmt Hi Lori, I apologize for not responding but thank you once again for your detailed response. It made me feel less alone. I did end up making a decision and I'm doing the autologous stem cell transplant, which is scheduled for next week Saturday. I've been feeling overly fearful and anxious when I think about the transplant. I think I've been in such a negative headspace for so long because everything that has happened to me that I feel like I've forgotten how to hope again. I'm a Christian and this has really tested my faith. There are days when I feel like throwing in the towel. I get angry and question why God would allow this to happen to me. Everyone that I've talked to that has had a stem cell transplant have all said it was worth it and greatly improved their quality of life, so I don't understand why I'm struggling to believe that it will happen for me too. I don't know if it's pre-jitters but I'm scared. I have a good team of doctors and they've been great and my family has been supportive, so i think I'm the problem. I just want my life back. I'm tired of walking around with a broken heart.

@loribmt Hi Lori, I apologize for not responding but thank you once again for your detailed response. It made me feel less alone. I did end up making a decision and I'm doing the autologous stem cell transplant, which is scheduled for next week Saturday. I've been feeling overly fearful and anxious when I think about the transplant. I think I've been in such a negative headspace for so long because everything that has happened to me that I feel like I've forgotten how to hope again. I'm a Christian and this has really tested my faith. There are days when I feel like throwing in the towel. I get angry and question why God would allow this to happen to me. Everyone that I've talked to that has had a stem cell transplant have all said it was worth it and greatly improved their quality of life, so I don't understand why I'm struggling to believe that it will happen for me too. I don't know if it's pre-jitters but I'm scared. I have a good team of doctors and they've been great and my family has been supportive, so i think I'm the problem. I just want my life back. I'm tired of walking around with a broken heart.

@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?

@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.

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?