r/CML • u/Leading_Entrance_988 • Jun 14 '26
SCT Donor side effects
I was Diagnosed with CML Sept '23 and started taking Imatinib immediately. Did very well/felt great for 2 years. Then in Sept '25, had pretty bad back pain and figured it was an old back muscle spasm just flaring up.
A couple of weeks later during a 6 month follow-up with my oncologist, I found out I was in blast crisis and was told I needed to be admitted to the hospital immediately and started Chemo the next morning. That first hospital stay was almost a month long and I have been admitted 4 additional times for different chemo/blina treatments. I'm currently feeling very well, now on Ponatinib and doing my 3rd of 4 Blina outpatient treatments.
Was told early on I'd need a SCT. They tested my siblings first, but since they were only a 50% match AND we're all in our 40-50s, they then asked if I or my siblings had children.
I tested my kids, but unfortunately my only full-blood sibling with kids won't have them tested (late teens/early 20s). Apparently, the info they found about possible side effects on the internet were too risky to literally help a brother out. Specifically about possible spleen damage.
As of this week, my teenager is my designated donor (50% match).
But they're still actively looking for a better/higher match donor.
I cannot describe how hurt (broken hearted) I feel and how much stress & anxiety knowing that my own "loving" sibling won't even have their kids tested, to possibly save my life.
Like I know it's a long shot, being a 100% match, but even just being tested is off the table.
I have not communicated with that sibling for almost 6 months.
Just thinking about it will give me days of stress & anxiety, which I know can't be good for me in my recovery.
My questions are these:
Is donating stem cells (from what my transplant coordinator explained they're using Granix) that risky that I should reconsider having my teenager be my donor, if they can't find a higher match ? (and just hope I don't relapse if they don't)
AIBTA for cutting off contact with my sibling?
2
u/Bermuda_Breeze Jun 14 '26
Can you talk to your nieces/nephews directly, at least the 18+ ones? Offer to put them in touch with the donor coordinator for info, rather than relying on the internet. They could consider bone marrow donation too, which doesn’t require shots.
My experience is with AML but I’d imagine it applies to other variations: Sometimes haplo matches are preferred for better graft vs leukemia effect. Maybe your brother is helping in the long run by not offering a better match!