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ckeys
@ckeys

Posts: 53
Joined: Sep 18, 2018

Bone marrow (stem cell) transplant support thread

Posted by @ckeys, Tue, Oct 2 8:21pm

I am five years out of an autologous stem cell transplant followed six months later by a reduced myleo-ablative allo transplant from my sister. I still have many side effects and would love to connect with other stem cell transplant patients who also suffer. I am a member of the blood disorders group as well as the pain management group and I’ve checked out the transplant group and then if I’m really meet the needs. Would welcome a discussion. My side effects include chronic pain – – both joint and generalized myalgia – – also chronic fatigue, mouth problems from GVHD and low immune system. The worst issue is unbelievable sweating, especially around my head. I had highly aggressive diffuse large B cell non-Hodgkin’s lymphoma but I don’t think that it really matters… A stem cell transplant is a stem cell transplant.

REPLY

@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

@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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@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.

@jeremy88

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.

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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

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.

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@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.

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