Hi,
My boyfriend has recently had a stem cell transplant to help cure his CML. Unfortunately only diagnosed in blast crisis. He’s doing well and starting maintenance post transplant of Imatinib/Ponaitib undecided quite yet. I’m just looking for advice from anyone having had a stem cell transplant as part of treatment on the maintenance therapy they were given? Thanks
Hi,
Yes I was treated with imatinib from 1999 (part of the initial clinical trials) until 2003 when I developed some resistance to imatinib. I was fortunate enough to have a sibling donor (HLA 10/10 match) so went ahead with a reduced intensity stem cell transplant in October 2003. I was then treated with 400mg imatinib for 12 months post SCT until I could safely receive several infusions mature donor lymphocytes (DLI) each 3 months apart. After the 4th infusion in 2006, evidence of residual disease disappeared and my PCR results have shown BCR/Abl % is virtually undetectable since 2006. I think my clinician would say I am cured of CML although I am still monitored every 6 months.
Sandy
Hi,
thanks for the reply. So good to hear your now cured and the BCR - ABL undetectable. My boyfriend was diagnosed at the ‘blast’ stage with Full Intensity Haplo transplant 9/10 match. Undetectable at first BCR-ABL post transplant but since then 0.0061/0.021 results pre restart of maintenance Imatinib. Currently dealing with GVHD issues which we were told very common post transplant especially as match was 9/10. We are awaiting lastest BCR- ABL results 🤞🏼🤞🏼🤞🏼 will be a decrease/no mutations. Professor dealing with Matt has said he would expect to detect some BCR post transplant as immune system is still building and he is immunosuppressed. It’s good to hear post transplant stories/info.
I find it all quite confusing especially with him being diagnosed mid pandemic and having transplant during Covid-19. CML being relatively rare in his age range too.
Hi Scuba,
Yes...my PCR tests show BCR-Abl % at 0.0002% and sometimes 0.0001%. My haematologist (Prof. Jane Apperley) just views these results as negative- or as you sometimes refer to this kind of deep molecular level as 'noise'.
This has been my PCR status for the last 5 or 6 years... at least ever since Hammersmith lab upgraded their PCR methodology, so I am not at all worried by it.
Sandy
I hope his GVHD is not having too much of an impact on his quality of life. He was obviously in a difficult place - Blastic transformation - so I am not surprised they went for full transplant. Even with reduced intensity SCT there is still a risk of developing GVHD. I wish him well and good luck for his next PCR test.
Sandy
