Side effects imatinib

Hi sorry to hear you have joined the club none us wanted to be in. We are here however, and we have a condition which unlike 25 years ago, is now very unlikely to be the cause of our death. It is however a serious diagnosis, and you need to give your body and your mind a chance to deal with the impact it has on you.

I was 50 when diagnosed 12 years ago. The bone pain was bad and for me took about 6 weeks for the worst to die down, and 3-4 months to go away completely. Hot bath, hot water bottles etc. helped. The common painkillers are not recommended by the drug companies with imatinib as 1), it can cause stomach issues like ibuprofen does, and 2) is, like paracetomol, metabolised in the liver, and we don't want to over-load that. I have taken both occasionally over the years, and not had any problems, but I try to get by without them.

A few people find the side effects of imatinib so bad they can't deal with them, but most of them do better on some of the other drugs which are available now.

I took 400mg imatinib for 10 years, then reduced to 200mg for a year, and am still producing good test results 8 months after stopping taking the pills. There have been trials which show that people who were in remission (I won't go into the test result details of what that means now - that can wait) and stop the meds following this track have a 70% chance of staying in what is called Treatment Free Remission (TFR). All those who lost remission got it back when they went back on the pills. Current indications are that the best chance of this working is for those who have been in remission for 3+ years, so it won't happen quickly, but when I was diagnosed I was told I'd be on imatinib for life - the science is always moving on. I was asked to do a talk on my experience at the CML Support Group patient day last year - you can see that on this link. As we were very much the same age at diagnosis and on the same medication I hope it might be useful. 

Just a thought on the job front, assuming you are in UK. The old Disability Discrimination Act gave employers a duty to make reasonable adjustment to  working conditions to address any issues caused by a diagnosis of any form of cancer, which you now have. That duty was like many others rolled into the Equality Act 2010. Especially where the bone pain is very likely to be temporary, it is a reasonable question to ask if they can make any adjustments to what you do for the next few weeks.

Most people find it helps them cope with the condition mentally if they understand it well. There's lots of useful information on the "About CML" and "Patient Info" tabs at the top of the page, but feel free to ask questions on here. Between us there is not a lot we haven't experienced or heard about on CML.

All the best

Alastair

Sorry to hear you are having problems with meds!  

I was diagnosed 12 months ago and was also started on Imatinib 400mg.  I was taken off them due to adverse side effects of which bad joint and bone pain was one of them.  I found that taking curcumin and additional vitamin D helped a lot, didn’t cure it but made it more manageable.  I also suffered with chronic fatigue which was causing problems with work ing (heavy manual job) and training. I had to all but give in as it was causing mental difficulties, severe depression and the like.  Be especially careful if you do start to feel down as it can spiral out of control very quickly! 

Hope you get things sorted! 🤞

Thanks all for the replies I was in so much pain last night up to 8 am I was up all night as I could not get comfy anywhere and the bone and muscle pain all over was unbearable when my wife got up she gave me a high strength vitamin d tablet
and 200 mg ibuprofen i also had banana on toast i went to bet at 830 am woke up at 1230 and the difference was unbelievable still stiff legs but very bearable my wife had phoned the hospital to say about my severe pain and anything they can recommend to get a phone call a couple hours later to say tell him to stop taking them and to come in next Monday to try another tablet but all the tablets have the same side effects all I wanted to know was if i can take anything to help the pain not to be told we will just try you on something else as I have only been on these since the 18th July

Thanks Alastair its hard from being the big strong man of the house with a heavy manual job on the railway to being a broken man in so much pain since being on the tablets but hopefully they can sort me out thanks again and I watched your talk with the link its good to hear other people's stories x