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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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@chrissyade19
It's gonna be slow climb for those little cells to get accustomed to their newest home. You may feel a little tired while they are adjusting to their old, new home. This will pass as your body and your team adjust to your bodies needs.
Hang Tuff !!!
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3 Reactions@chrissyade19
Well, this is a big day for you! And it will be so very anticlimactic as you’re finding out! We anticipate Day Zero for months! Then, all of the hoopla surrounding the decisions to have the stem cell transplant, the logistics of making it happen, the tests, the…well, you name it, all comes down to about a 20 minute infusion. I remember thinking, “That was it??” Pretty sure I can speak for almost everyone who has gone through this. But that small procedure can make a life changing impact.
With receiving your own cells, once they tumble back into the bone marrow they’ll feel right at home and jump in where they left off…after their mini-vacation the cooler. 😅
So glad you’ve tolerated the chemo. Just for full disclosure, the next week you might start feeling the side effects. But hang in there! That passes and life gets better! I’m so happy to have this update!! Wishing you a smooth day, Chrissy! Air hug! 🥰
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1 Reaction@loribmt I got chemo Saturday through Wednesday and I tolerated it pretty well. Today is officially Day Zero, the day I get my cells back! I'm feeling so many mixed emotions about this. It feels surreal that this day I've been waiting months for is finally here. I just want to enjoy my life again and feel like I'm living instead of existing. Did you feel the same way when you had yours?
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3 ReactionsPerhaps look into CAR-T therapy? Its response rate with certain cancers is very good.
Lori walked me through mine with details just like this. I had my cells from a donor. Either way, much is similar. Fatigue is a big deal. Nausea and that have solutions. Be a patient. Give your body the time it needs.
My experience is that the support staff choses this department. They love how we get better and better as time goes on.
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2 Reactions@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! ☺️
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4 Reactions@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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3 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?
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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@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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