← Return to Bone marrow (stem cell) transplant support thread

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@ckeys, thank you for starting this discussion topic as I think it is a great topic to have as many hematology patients have or may face a stem cell transplant. I would like to invite @brian_strickler, @craigkopcho, @kjs1015, and @bobby2014 to this conversation to share their, or their loved ones, experiences with a bone marrow transplant. @ckeys, you have had both an autologous and allogeneic transplants. Was one more difficult than the other for a side-effect standpoint? If you don't mind me asking, how are you doing as far as your lymphoma goes?

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Replies to "@ckeys, thank you for starting this discussion topic as I think it is a great topic..."

@JustinMcClanahan Thanks for asking Justin and for your help getting this disctgoing.

My auto transplant was fully myleoablative and required five weeks in the hospital. They brought my blood cell count is down to zero, and I had to build from there. The side effects were pretty intense and that’s when my femur pain developed. I developed PTSD (apparently not uncommon). It was disappointing that my cancer came back within six months.

My allo transplant had its own challenges, including 100 days of daily visits, GVHD in my gut and mouth. But the worst of it was the steroids and their side effects. I bounced back from my auto transplant, I never really bounce back to my old self after the allo. And my cancer returned before I received my transplant and I came out of it with still having the cancer, given 6 mos to live at age 49… Ultimately it was radiation that put me in remission. My allo transplant left me suffering from chronic pain, chronic fatigue, GVHD, neuropathy and host of other issues.

So I would say, at the time, the auto was much more difficult, but the long-term side effects of the allo transplant have been the biggest struggle. Thankfully, I remain in remission five years later! I work hard to accept the new normal… The cost was high, as I have not been able to return to work and I am only 54. But I am alive!!! I have asked myself often, “If I knew what the side effects would be, would I have still chose and the treatment?” Unequivocally I can answer yes!