Hi everyone, I’m a 63 year old man diagnosed with Chronic myeloid leukaemia in September 2023 whilst living in New Zealand. I have been on imatinib ever since but have had terrible side effects, especially periorbital oedema. I have had to stop the drug 3 times due to toxicity but have persevered. My recent BCR/ABL has increased. My haematologist said he would for the next result before he decided on whether to do another bone marrow biopsy. I have not had the result yet but have another bone marrow biopsy booked for late January. I’m anxious because this is not what we discussed and frankly feel unsupported by the healthcare team despite my reaching out to them. Has anyone else had imatinib failure and if so what treatment were you started on as a result? I would appreciate any information. By the way I am now living back in the UK.
Hi @AJ01 I am really glad that you have found us and I am sorry to hear about the side effects you have been experiencing.
I attach the Blood Cancer UK details on Chronic myeloid leukaemia for you
Chronic myeloid leukaemia (CML) | Blood Cancer UK
If you feel unsupported by your medical team you might consider either changing medical teams, if that is possible, or going through your hospitals PALS system (Patient Advice and Liaison Service)
I realise that this is not quite what you were looking for and I hope others will be able to share their experiences for you.
Perhaps do not feel you have to agree to anything you are not happy with and also write down all your fears, questions and practicalities and be pleasantly assertive till you get the answers you need.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do let us know how you get on and be very kind to yourself
Hi @AJ01 - a big welcome to the forum 
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I can relate to your feelings of anxiety. I’ve been living with Chronic myeloid leukaemia for almost 13 years. After two years I was moved from imatinib to nilotinib, as the former wasn’t getting my results to where they needed be. The nilotinib worked well and I’ve been off medication, but closely monitored, for the past two years. And so far, my BCR-ABL results have remained stable at very low levels or undetectable. Of course, each of our journeys are unique, but I hope this is helpful.
Do keep posting and let us know how you are doing.