autologus bone marrow transplant late effects

blueroses

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.

Unknown

Hi blue. We spoke earlier in the chat room.
I was on adriamycin and two other drugs which I cannot recall in '86-'87 and again in '88-'89. I now have arthritis and osteoperosis, cronic fatigue, chemo brain, and general kussedness (ask any of our chat buds).
But what really ticked me off is that YEARS after finishing chemo I learn that I am allergic to iodine and most chemo drugs are loaded with it. I was not tested for anything before chemo began, and suffered extreme nausea and vomiting after each treatment which was not eased at all by the usual nausea meds (so my onco gave me ativan so I could 'sleep it off'). I also have mytral valve prolapse which could have caused serious problems.
They could have freakin killed me in the name of saving my life. I certainly hope oncologists everywhere are being more careful now but if I ever have to go back into any kind of treatment you can bet I will be more proactive (might even show up with my lawyer for the first treatment, just to set the tone). Told you I was kuss-ed.
Anyway, sorry you need to be here but happy to see you any time you care to talk. You can email me as well if you wish.

Erin78

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

Erin78 said:

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.

Thank you
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