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Chimerism/ Mds/Dli
Hi everyone
I was diagnosed with aml in May 2018 had a bone marrow transplant in May 2019. Life got pretty much back to normal around March 2020. Fast forward early last year 2024 neuts started declining. November 2024 showed I had MDs 3% blasts, only 37% chimerism in the bone marrow transplant, full chimerism in peripheral bloods. Aml still mdr negative .
Last week I had a Dli from original donor , thankfully he was still glad to donate after nearly 6 years.
My latest blood count are platelets 130, neutrophils 0.9, HB 134 and on the MDs Ipss-m calculator I am low risk .Normal karyotype, srss2 and idh1 mutation.
I am feeling absolutely fine still running 3 times a week but anxious about what my future holds.
Mark
Comments
Hi Mark,
My name's Rachel, I'm the Lead Nurse here at Anthony Nolan.
Thank you for sharing your situation on the forum, I'm sure it has been a very anxious time you. It's great to hear you're feeling physically well and being closely monitored... and the opportunity to have DLI has been possible.
It may be that others on here are able to share their experiences of how they coped after changes to bloods/chimerism or the outcomes following DLI. As I'm sure you'll appreciate, every case is different and frustratingly you are in a position of having to wait, to see what impact the DLI has.
If you would like to talk to someone during this time, please do call our patient enquiries line 0303 303 0303 or we can refer you to our Telephone Emotional Support Service where you can access psychology and counselling services, which you may find helpful in managing, the understandable anxiety that you're experiencing.
Please do call if you think that would be helpful for you.
Best wishes
Rachel