@thenester I had allo transplant 9.5 years ago. The first year after the transplant was rough for me - I had acute gut GVHD and other complications.

Fortunately, since then my recovery progressed very smoothly. I’m now working full time, traveling, exercising and living a normal life. This wouldn’t have happened without my transplant. I would have been dead.

Each SCT recipient has a unique recovery experience, so it’s hard to predict what will or won’t happen. What gave me confidence during my transplant and recovery was how competent my doctor and his team were. My transplant wasn’t at Mayo, but I trusted my doctor to do everything to get me through the challenges, and he did!

Five years ago I was diagnosed with chronic GVHD which affected my skin. It was fairly mild and I have recovered from it. I should be off immunosuppressives by the end of the year.

Good morning, @thenester.
Ohh goodness, “Terrified” is such an intense word! I hope with the help of some of my BMT (allogeneic bone marrow transplant) friends here we can help you feel less fearful of the procedure and recovery.
While you’re no longer able to have the autologous transplant using your own cells, there still may be the option of the allogeneic tranpslant using donor blood stem cells.

The upside, there are long term benefits to having the allo transplant such as you’re less likely to have a repeat transplant than with the auto. Your current immune system is no longer recognizing cancer cells responsible for your diagnosis. By clearing out your bone marrow, basically the heart of the immune, your current blood stem cells and defective lymph system will be purged. The newly donated blood stem cells from a donor, should restore a healthy immune system to you once again. However, it will never be quite as robust as the ‘factory installed model’ but still very effective.

GVHD (graft vs host disease) is a potential downside to having an allo transplant. However, it is that very effect of ‘graft vs leukemia or graft vs tumor’ that makes this type of transplant successful. So it’s important to have some reaction to the transplant. There have been advancements in preempting some of the more severe complications of GVHD during the recovery period. Mayo Clinic has been at the forefront of this mitigating program for several years having introduced the new protocol a couple of years after my transplant.
When I had my transplant, like @alive, I fully trusted my doctor and his team to keep me safe and healthy. They wanted a successful outcome as much as I did.
I had the same concerns you have about gvhd. My doctor and his team were very upfront telling me about potential gvhd side effects. Bottom line: They couldn’t tell me what, where or when or if it would happen but that IF it did occur they’d handle it! And they did! I’m coming up on 7 years post transplant, feel as though nothing ever happened and enjoying my life…that I wouldn’t have if not for the transplant. I’d have been gone 6 years ago.

The fact that you’re in remission now is fabulous. If a BMT is warranted and you’re a good candidate this may be a preferred time for the transplant. But that’s a discussion to have with a transplant doctor. I know you’re apprehensive, but this is a potential gift of a second chance at life…it has the potential to keep you in a durable remission.

Do you have an appointment with a transplant doctor yet? I can’t remember, are you in Phoenix?

@thenester
I'm sorry to hear that, Jennifer. My transplant doc has told me that the newer drugs that are now used post allo transplant help greatly with GVH reactions. And, yes-everyone reacts differently to either allo or auto SCT. You will do great! Just keep moving forward & ask lots of questions.

@thenester , how are you doing? Did you meet with the allo oncologist? Next steps?