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What are the highs and lows of a stem cell transplant?

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Looking increasingly likely none of the TKIs are going to be kind enough to my good blood cells to allow me to continue treatment with them so was just wanting to hear the experiences of anyone who has had a stem cell (bone marrow) transplant. Don’t want it sugar coated, that won’t help me. I’d like the full monty, warts and all version please :)

thanks in advance 

Simon

No sugar coating:

https://www.nature.com/articles/s41409-019-0624-z

"Death after hematopoietic stem cell transplantation: changes over calendar year time, infections and associated factors"

You should consider not giving up on TKI's just yet. By your note above - it seems your TKI was working, just causing suppression of normal blood cells. Is this correct? If so - there are protocols that can be followed to "pulse" your treatment so that over time your normal blood system recovers. This is what was done for me. I had SEVERE myelosuppression where my neutrophils nearly disappeared. They were suppressed with Imatinib and very much more suppressed taking dasatinib. My oncologist, who is an expert researcher in the field, suggested I go on and off with dasatnib starting at a very low dose and then work dose upwards as needed. It took many months of on again, off again and each time my blood system was allowed to recover and each time it would recover to a better place. I never had my dose increased, the very low dose was sufficient to bring me into remission. My doctor did not want me to take "neupogen" to stimulate my blood system as he believed it also stimulated the cancer. He preferred "pulsing" the drug and measuring my CBC weekly until stable. He said stopping and starting is fine as long as I was in chronic phase (zero or few percent blast cells).

I have a suspicion you can try this approach and it could very well work.

I have been "undetected" now for over two years getting ready to stop therapy all together on a minimal dose of 20 mg.

Stem cell transplant should be an absolute last resort when nothing else works. You still have options.

Thanks, will read the link this evening. Haven’t given up on TKIs yet, still part of an Asciminib trial and will also try Basutinib if the former is too unkind. Already been pulsing for two years but PCR still not markedly dropping whilst platelet and neutrophil counts keep dropping. Neutrophil drop is combatable with G-CSF injections but I can’t do anything about my low platelet count, so that could be the deciding factor eventually.

I’d still be keen to hear of any personal experiences of transplant. Something to prepare myself with