3 patient cases

“ I’m diabetic and on pills for blood pressure. Is my CML doing OK? Should I switch?“

Alan Age 68 Imatinib 1 year PCRs every 3 months: –56%, 14, 6, 3, –0.9% BCR-ABL/ABL ratio at a year Type II diabetes Fit and active

“I’m not sure about my consultant…”

Margaret Age 61 Diagnosed 4 months ago Not had PCR checked Not happy…

Margaret Haematology appointment today. I had my first PCR test since dx. Apparently, according to the haematologist, test results are meaningless, so no point in knowing them !!! He implied there are far more important things (for him?) to deal with than CML (fair enough - but CML is important to me!) No interest that I feel so tired, my legs ache, I can't sleep and have had a rough time emotionally. It's just over two years since I finished palliative chemo for colorectal cancer (defying the odds at the moment, and in remission). My husband is awaiting radiotherapy for prostate cancer (haematologist knows all this). There was much more....! I came home and had a good weep! I don't really want to change hospitals, as my wonderful oncologist may need to confer if I need more chemo, so will try to change consultant. Meanwhile has anyone got suggestions for good compassionate treatment in the ??????????

Margaret Thank you everyone. I have contacted PALS to ask how to change my consultant. The implication was that CML is easily treated these days, and there are more deserving cases in the hospital. I was told that treatment wouldn't be changed whatever the PCR result, and that the results mean nothing, except that people get worried about them.. I have to assume that perhaps he had just been dealing with a harrowing case. After complaining through PALS a couple of weeks ago that I couldn't get a reply to my calls to haematology, the nurse specialist got my appointment brought forward by eleven days, but still over four months since starting Imatinib and only my third appointment. Reluctantly he agreed that I could phone for results in three or four weeks. My husband tried to say something, but we were basically told it was time to go!

“ I’d really like to stop treatment… “

Debbie Age 29 Keen to start a family Imatinib 18 months, v. good response (0.05%) Can I go ahead and get pregnant?

3 patient cases