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autologus bone marrow transplant late effects

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

can i get some feedback from long term survivors who are experiencing a lot of late effects after a bone marrow transplant (autologus - meaning your own bone marrow)? I have atrial fibrulation from adriamycin that has resulted in a pacemaker implant and many trips to the ERs, chronic fatigue syndrome, early arthritis and cataracts, horrific tearing they can't fix - doubtlessly due to radiation, degenerative back disease, chemo brain, etc etc. Please let me know how you are doing. My transplant was in 1991, diagnosis and earlier treatment 1989.

Erin78
Posts: 4
Joined: May 2007

Hello Blue,

I am 11 months post auto stem cell transplant for refractory Leukemia. I am 30 years old and was diagnosed at age 28. Although I am not far out from my transplant, I wanted to reach out to you and let you know that you're not alone. Everything I've heard from people on this board (as well as others) have shared that there are many side effects post-transplant, even with an auto.

I am so sorry you are struggling right now. I, too, have had effects from the Arsenic that I was on prior to my stem cell transplant; a life long runner, I am now relegated to non-cardio exercise because my heart just cannot take it.

Please keep us updated as to how you're doing.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Thank you Erin for your validating comments. As many of us long term surivors with multiple late effects know we are so often invalidated by physicians who aren't up to speed yet on what the treatments have done to us. Slowly they are waking up but it sure has been quite the journey, almost like two illnesses, one being the cancer and the other all the multiple late effects cause issues of their own.

Thank you for your support and I hope you do better in the future. I can't imagin how difficult it must be for a runner who is told they can't run anymore. I'm so sorry to hear that. I used to be in a very creative field and now because of my 'chemo brain' I can't creatively get myself out the door most days so in some way I know how you feel about a passion you have lost.

Be well.

God Bless
Blueroses

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