Hi. I was diagnosed with CML in August 2020. It's been a steep learning curve!
I gave been on Imatinib since a week after diagnosis. It was discontinued for a couple of weeks because my white cell count fell dramarically but I have now been graduated onto the full dose for the last 6 weeks. Unfortunately I seem to still be developing new side effects ; swollen eyelids and itchy sore eyes, an itchy rash to my arms and legs. Is this to be expected after so long on treatment?
Some side effects lessen over time and others increase. Imatinib might not be the best TKI for you. One of the other TKIs could be better. It's a matter of trial and error as there's no way to predict how each TKI will affect us until it's tried. I've switched back and forth between imatinib and dasatinib.
All of the tki s have side effects.What you describe in terms of swollen eyelids is very common with Imatinib and is described as odema or swelling of tissues-itchy eyelids and swelling of them is a condition called blepharitis.I suggest that you bathe your eyes in sterile boiled water (not too hot though) using cotton wool as a swab.Go from the centre outwards and use a separate swab for each eye.You might develop conjunctivitis or eye bleeds but it is irritating rather than life threatening.Some use a used warm teabag as a compress to the eye area or a plant based eyewash.
The rashes and itching are not unusual -I use on an occasional basis a steroid such as Betnovate cream and this helps.Some have a very itchy scalp as a side effect and a Betnovate based lotion might help.
These side effects will be viewed by your clinician as being quite mild relative to some chemotherapy treatments.If you switch to Dasatinib be aware that 1 in 5 patients are prone to pleural effusions (fluid build up on the lung) and that is a serious side effect.
After 15 years on Imatinib I still have swollen eye tissues,itchy eyelids,rash on my face at times and at times painful night cramps plus non diabetic peripheral neuropathy.However I am still here.
My face looks like I have been in a recent boxing match and to cap it all the operative from my local petrol station who is from South Asia asked me if I had any Asian or Chinese blood in me;she was just being friendly!
Good luck in joining our CML club.
John
Hi Gaynor
Yes those are all normal. For me I had quite a few in the beginning and the odd thing here and there 1-2 years after starting treatment. Side effects can occur at any point but by year 1 id say most will rear their heads and most of them for me calmed down or disappeared. Some will remain unfortunately. A small price to pay and all that.
Alex
