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I Can't Decide Between Allogeneic or Autologous Transplant
Hi, I’m 29 and I'm going through the process of being evaluated for a stem cell transplant but my medical history is somewhat complicated, which is making the transplant process even more complex. I have sickle cell anemia, which has been relatively stable for the majority of my life until I was 27, when I was diagnosed with two autoimmune disorders, RA and scleroderma. Both of the AIDs have made my sickle cell worse and my sickle cell has made the AIDs progress more quickly than they should have, which has negatively impacted my quality of life. My hematologist said I have two choices: I can either do a BMT, which would get rid of all 3 diseases, but it’s riskier, the mortality rate is higher and there are other factors to worry about like graft vs host disease. The other option is I do an autologous (they would use my own cells) stem cell transplant. It’s safer and the mortality rate is not as high, but it would only take care of my AIDs, meaning I would still have to live with sickle cell. I keep going back and forth between the two; on one hand, it would be nice to be free of all these diseases, but I’m terrified of all the risks and complications associated with it. I have so many other things going on in my body because of the scleroderma and it has caused so much damage to my body. Sometimes I have this fear I’ll die from the BMT. On the other hand, the autologous route is safer and I could live with the sickle cell. However, my fear is that if I relapse or the HSCT doesn’t work for my AIDs and I still have sickle cell, I’ll be back where I am right now. I don’t expect anyone to tell me what to do and my case is more complex since I don’t just have sickle cell, but I was hoping to hear from others who have done a bone marrow transplant if they think it’s worth the risk or not? What would you do if you were in my situation? Thanks.
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Hi @ajdmyers I wanted to officially welcome you to Mayo Connect! Thank you for popping into the conversation and being a morale booster for @chrissyade19. It's members like you who have walked the walk, that can make such a difference in the lives of anyone just entering the stem cell transplant journey.
You're still a newbie with your BMT, having gotten your 2nd chance at life in January 2026. I hope you'll become a regular in our BMT support group. My BMT was 7 years ago at Mayo Rochester so it's always fun to have fellow BMT alum join in. There so many discussions where your recent experiences can be helpful, from long term lodging, to how you recovery has been...
If you'd like to share more of your journey with us, you can start a new post or join many of us here in this discussion I started several years ago.
My bone marrow transplant story. Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Another fun discussion is this one where we're encouraging patients with any type of transplant to post a memory or photo that wouldn't be possible without the transplant!
Snapshots of hope: Life on the other side of transplant https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
If you don't mind sharing more about yourself what brought you to needed a BMT?
@chrissyade19
Chrissy, I will pray for your steady recovery from your ASCT. I had an auto transplant 18 months ago & am feeling very well at this point. Recovery does take a few months, but you will regain your energy & a much more positive outlook as you will be feeling better. Blessings 🙌
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2 Reactions@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 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.
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2 Reactions@chrissyade19
Chrissy, it’s absolutely normal to have anxiety when you’re facing any unknown, especially a potentially life altering procedure. But the upside of all of this IS getting your life back. While it may not include reversing your sickle cell, this could allow your auto-immune diseases; scleroderma and RA to subside, which would be huge!
I remember you telling me that you’re at Mayo-Rochester. That’s my home away from home and I firmly believe that you’re in the best care possible! I also am pretty sure once you begin the journey, instead of being on the sidelines waiting, that most of your anticipation and anxiety will melt away. Let your team guide you along. You can trust them to do the worrying for you and to make your transplant journey and recovery as easy as possible.
Is there any information that I can provide for you? Have you had your stem cell harvesting yet?
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1 Reaction@loribmt I'm actually at Mayo Clinic Jacksonville, which is where I live, but I assume the same level of care is across all of the Mayo campuses. I just worry about my hands a lot; scleroderma and RA have really affected them and I wonder how much the transplant will help them. I miss being able to use them.
I'm getting my stem cells harvested tomorrow. I'm praying that tomorrow will be enough and I will not have to do it again. I've gotten four injections so far and I'm kind of over it.
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1 Reaction@chrissyade19
Hey Chrissy. You can safely assume the level of care is equal across all campuses. ☺️
I’ll be thinking of you tomorrow and sending positive vibes that all the new little stem cells will be enough for your transplant! Squeeze every last one of them out…LOL.
Let me know how you did with collection, ok? I get really invested with my stem cell peeps. 🥰
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2 Reactions@chrissyade19
Hi Chrissy! Well, today is the day you were to be admitted for the start of your autologous stem cell transplant. ASCT). I know you’ve dreaded this, but also have high hopes for restoring some aspects of your life if everything goes as planned. These transplants have helped reverse or eased symptoms for certain autoimmune diseases. It would be so wonderful for you to have the scleroderma and RA fading into the background.
Just wanted to let you know I’m thinking of you and wishing you smooth sailing. Sending a hug! Remember, one day at a time! 🥰 Let me know how you’re doing, ok?
@loribmt Hi Lori, thank you so much for checking up on me, I really appreciate it. I'm admitted in the hospital now and I'm currently receiving chemotherapy. I'm trying to keep my spirits up but it's been hard. Right now I'm eating dinner and enjoying the view outside 😌 I hope you're doing well.
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1 Reaction@chrissyade19
Hi Chrissy, What a lovely view and room! Dinner looks pretty good too!
My view wasn’t the same as yours but I’ve ‘been where you are’…the first day of chemo. It’s often filled with mixed emotions as you start your journey. But it’s the first day towards a healing journey as well.
I think with the ASCT that you’ll only have 1 or 2 chemo infusions? It’s enough to help prepare your bone marrow for the return of your collected stem cells. Once your marrow and blood stream are effectively cleared of the auto-reactive immune cells, the infusion of your own cells will help reset your immune system.
The cells will be infused through the port where they enter the blood stream. They tumble along inside your blood veins until they enter into the bone marrow through specialized pores. Once inside, the cells set up housekeeping again and resume making blood cells…red, white and platelets! That’s called engraftment and will take place usually anywhere from 10 to 20 days. It’s really quite amazing!
There may be some side effects with the chemo. It’s not uncommon for some nausea as the first symptom. There are no awards for remaining stoic. If you’re nauseated make sure you talk to your SCT team right away. They have meds to help keep you comfortable. It can also be helpful to your guts if you eat a some Greek yogurt daily.
Hang in there! I’m here anytime you need some moral support! ☺️