CML & Imatinib side effects.

Hi Nick Malone and welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic Myeloid Leukaemia (CML) but I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Let’s look for any group members to pick up on your post.

Over my 25 years I have had over 800hrs of chemo as well as various Immunotherapy, Targeted Therapy and Immunosuppressants and I have at some point experienced all the side-effects you have described….. and some……

Although I have never suffered from depression and not had meds for this.

I would always advise that you check out the side effects with your clinical team as at times they can help you out.

I always keep in mind that if I feel rough….. how does the targeted growth areas in my body feel ;)

The one very important thing my CBS told me was to aim for 1.5 to 2 litres of water each and every day all the way through my treatments as this helps flush out the chemo toxins quickly and protects my kidneys.

I did suffer chemo-brain….. so was often forgetful, slow to join in conversations and confused but the family understood…. and after a time we started to see the funny side of this……. and it does pass once treatment is completed.

The one very important thing my wife did from time to time was ensure I did not drive where there was any sign of cognitive impairment…… at one point in my treatment my consultant actually told me not to drive for 6 months as I was not fit to drive.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks provide amazing support and the Heamatology Support Group I attend at our Maggie’s have a few folks with CML.

For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

Always around to chat. 

Evening Mike,

Thank you for your very detailed reply.

I had some good news today as my cancer doctors secretary called me to reply to a call i put through to her.

The imatinib is clearly working as my white blood cell count is now down to 16. It was 80 in December so thats good news.

I will just have to see it out as its early days on the medication and it clearly takes time for my body to adjust to it all. I feel much more positive after the call and im controlling the pains and aches with pain killers.

I live in East Sussex so will check out the Maggies centres near me as I prefer face to face but would like to talk like minded people. And get some reassurance from them too.

What you have gone through is nothing to what im going through as it sounds like yours is very rare. And you have had 25 years of it too. Bless you.

I do know the imatinib is very toxic so have to expect some changes in my body and mental health too.

Once again thank you so much for your reply.

Nick (Malone)