Bone marrow (stem cell) transplant support thread

@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?

@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!

Interesting. Bone Marrow transplant was an option I discussed with doctors. Actually they brought it up. Looking at web resources led me to believe BMT should be the considered if I were near enough to death to have a "termination" date. BMT costs a lot, both financially and to bodily systems.

If you’re going to need a bone marrow transplant I would encourage you not to wait until you’re on deaths door. It does require that you have a certain amount of robust health to be able to survive the transplant. Many people sale through it without all of the side effects I hat. I think some of my problems came from the fact that it was so hard to get my mission and I had an alphabet soup chemotherapy us prior to my transplant. There are also many organizations out there to help cover the costs of co-pays, coinsurance, medications, and more. The social worker at your bone marrow transplant center should be able to connect it to this resources such as Lymphoma and Leukemia Society and Be The Match. Many hospitals also offer compassionate care subsidies. Best of luck to you.

@ckeys - Thank you for your response. I am ok. Thanks to careful application of antibiotics. I do worry about growing resistant bugs, so I try to learn more about that topic.

Ask your docs about using CBD for pain and nausea relief.

Have you used CBD? I am facing bone marrow transplant in the next month, and am wondering if CBD might help, and if the docs at Mayo would be in favor of using?

@rae1949 I have used CBD and canibis. I find THC containing g items more helpful. That said, you’re immune system is so depleted during stem cell transplant, you definitely want to loop your medical team in. I found it easiest to approach nurse first. Best of luck to you!

My husband had BMT in March 2019. The transplant went well but he still experiences nausea especially in the morning. He had a bout of GVHD and has seemed to recover from that pretty well. He is 71 and gets discouraged because he does not feel well. He has never had an appetite. Any suggestions?

Hi @maryb13350 Welcome to Connect. I see you’ve been a member for several months but it’s your first time posting a comment! I hope it’s the first of many. ☺️

Your husband and I had our transplants just a few months apart in 2019. Mine was the end of June. If he’s experiencing GVHD then he had a allogenic transplant with cells from a donor, not his own cells. Unfortunately Graft vs host can be a ‘gift that keeps on giving’ as a side effect from our getting a second chance at life. It can present itself anywhere in the body but can usually be stomped out with a burst of steroids if it’s just beginning. If it’s chronic, then there are other meds that can be prescribed to mitigate the symptoms.

I’m sorry he’s still having nausea. That’s a miserable feeling. Does he still have regular followup appointments with his transplant team? Has he discussed the nausea with them or had any tests to see if there is GVHD in his stomach/digestive tract?