Hi
I am 63 years old and recently diagnosed with CML. WBC was 24 and I have been taking Imatinib for 12 days. Feeling tired some of the time and have a rash on my torso and legs which is not itchy. I am told I have a good chance of remission within a few years on this pill and have had lots of blood samples taken along with ultrasound and a bone marrow extraction.
Having read some of the accounts on here I feel a bit of a fraud as I have obviously been diagnosed early and later in life.
S
Hey Stuart, there are no frauds when it comes to CML. If you have it, I'm afraid to tell you that you are not a fraud! You really have CML, you really have cancer and that's the end of that. You've "chosen" one of the better ones, or at least your timing is good as we didn't always have the treatment options we do now.
That rash might be petechiae. Search Google images for that and if it looks a little like that (the results will show severe cases the most part, so maybe search for "mild petechiae") then that could be it.
It's usually casued (in CML patients) by low platelet counts, which is pretty normal for a newly diagnosed CML patient.
Tiredness is super common, not least because of the mental strain but your body is going through a lot with all the new medication, etc. Things should start to settle after a couple of months, so once you it "CHR" (complete haematological response - i.e. your red and white blood counts, and a few others, appear normal) it's time to consider mamaging any remaining side effects. But with luck, things like tiredness and rash will start to dissapate and you will feel much better. If not, there's things that can be done about that for most patients.
David.
Hi David
Thanks for replying. I think it's just a reaction rash and should fade, its mentioned in my imatinib fact sheet. It doesn't look like any of the pictures I looked at, even for mild petechae but i have left my nurse a message anyway. If this is as bad as it gets I can cope without any trouble, here's hoping.
Hi Stuart,
I’ve been on treatment for 20months and I have small red raised pimples at the hair follicle on my upper arms, upper legs and some other parts. It’s Folliculitis and you can get a cream from the GP. It defo works but seeing as we will be on TKI forever you’ll have to keep applying it forever. I’ve learned to live with mine as it doesn’t itch and is in areas that doesn’t effect my life.
All the best
Alex
