Diagnosed with Chronic myeloid leukaemia ('CML') one year ago and have been taking Imatinib 400 ever since. Worked remarkably well and am now about 0.07. I thought the side effects would improve but the bowel problems seem to be getting worse recently. Some days am ok other days have diarrhoea and tummy ache and have to lie down. Always in the morning and normally ok again after about 2 hours. Do you think this is normal?
Hello @pammy, I’m sorry to hear you’re struggling with these side effects.
The bowel problems you’re describing are something others on imatinib have talked about in our community, and you might find it helpful to have a read through these threads where members have shared their experiences: Imatinib side effects and Side effects with CML treatment. You can probably find more using the ‘Related’ feature at the bottom of the page or the Forum search function. Our CML treatment and side effects page also has some useful information about managing TKI side effects.
That said, because your symptoms have been getting worse rather than settling down, it’s important to let your haematology team know what’s been happening. May I ask if you’ve been in contact with them about this?
If you’d like to talk anything through in the meantime, our Support Line is here for you on 0808 2080 888 (option 1) or support@bloodcancer.org.uk. It’s staffed by our Blood Cancer nurses, so you’ll be speaking to experts.
Take care,
Ceri - Blood Cancer UK Support Services
2 Likes
I was diagnosed August 24 been on imatimib since then. My last BCR in January was 0.12 apparently I’m a slow responder but getting there. I do sometimes have the urge to go to the toilet (watery) but also normal, have suffered with ibs in the past so have always wondered if there is a connection. I generally cope okay with it