I haven’t been on the group for a while and I was wondering if anyone has any information on how people generally are coping after discontinuing imatinib and remaining undetectable ? Im coming up to my 2 year anniversary and im over the moon with my results but have never seen an upturn in my energy levels which is the main impact on my living a normal life again. I attend a relatively small hospital and my haematology doctors aren’t in a position to answer my questions so I thought I’d ask the people in the know! Has anyone else returned to a normal energy level? And does anyone know how many of us in the group are sustaining the molecular remission for a long period? Any updates would really help give me some perspective, thank you.
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23 months off imatinib
When I redcued imatinib from 400mg to 200 mg I had significant improvements, in energy, in cramp, in gastric issues and didn't have any more eye bleeds. Any change when (a year later) I attempted TFR was not as much as the reduction gave me. I lost TFR and went back to 400mg, but the side effects were not as bad as they had been initially. Now back at 200mg, and doing more exercise since I got a new hip last year, I've lost half a stone. I don't have the same energy as I did pre diagnosis, but I was 50 then and I am now 66!
Have you had any tests or anything to see if the issue is not related to your TKI history? Might be worth a chat with a GP, or with the Hammersmith folks as per the pinned post above?