Questions on imatinib

[Katesilgrim]

I was diagnosed with CML in December 2016. I have been on Imatinib since January and am responding very well apart from a few side effects. Swollen eyes, lower legs and night sweats. I got over nausea and acute tiredness quickly. I was wondering if any one else has my problems and if so how long it could be before if ever they will settle down. My consultant says my body will get used to the drug and implied that maybe the only thing would be to change treatment, something neither of us want.

[AJA1717]

I was diagnosed with CML in 2000 and was on the clinical trial for Glivec/imatinib. I suffered the same awful night sweats as you are experiencing for about 6 months, until the leukaemia was under control. I also suffered from water retention in the fingers and particularly round the eyes. This lasted longer and I had to take a mild diuretic every day for several years. It did eventually settle down over about 5 years and drinking a few glasses of water every day did help. Keep persevering - Imatinib really is a wonder drug for CML patients. Before this, I was on interferon which left me in such pain and with horrible side effects. I was so glad to be accepted on the trial and have been well ever since. Good luck

Jane

[Hidden]

Good morning.

I was diagnosed with CML in Dec 2000 and Glivec didn't exist however it was being developed from initial research by Dr Brian Druker in Oregon. To cut short the story I was placed on an experimental trial of what was called STI 571 combined with interferon; by my consultant at RVH Belfast , Dr MF McMullin (now Prof) and after months the interferon was dropped and the STI 571 dosage doubled to 400mg per day. At last the Phve levels began to diminish more quickly and eventually after about 18 months I was showing no signs of CML in the regular Bone Marrow Biopsies.

However the side effects of the ( now licensed ) Glivec continued with nausea, diarrhoea, fluid retention and a deep level of tiredness and exhaustion which sleep didn't appear to change.

A couple of years ago my GP prescribed Omeprazole for the stomach and digestive side effects and this has made a major change in that the nausea has diminished almost completely as has the digestive upset generally. So this might be a solution for you too.

My main point in my preamble about my story is, that in the absence of a suitable donor ( I was an only child ) and without STI571 (or Glivec) prior to my diagnosis I would probably have died of leukaemia in two or three years from diagnosis indeed that was what I was told when I first went in to hospital having collapsed with a hugely swollen spleen ,about to rupture.

In other words I have like you suffered from the side effects and still do however looking back at the outlook prior to Glivec and its successors, there is so ,so much to be thankful for.

In fact my colleague on the drug trial died as the treatment had little effect on her CML and a subsequent related BM transplant ultimately failed for her.

She died leaving a husband and young family whereas Thank God I lived to see my four children grow up. The youngest was only four months when I was diagnosed.

This sounds like a story all about me and I suppose it is, but my point is we are so incredibly fortunate to have this pernicious disease in a time when a meaningful treatment is available to us and is successful for the majority of sufferers.

I think we learn to live with the side effects and how to manage them over time.

We should remember the alternative to this before the synthesis of Glivec was often a one way ticket.

I hope this helps to put things in perspective and is taken in the spirit it is meant - not as a ticking off but rather as a long view from someone diagnosed with CML over 16 years ago !

[Str1960]

I have been on Imatinib since April 2016 when I was diagnosed with CML. It is hard to know if it is responsible or not for my suffering profound tiredness and painful cramping in my fingers, legs and torso. I also have noticed water retention below my eyes and the night sweats ended a few months after I left hospital. A bit a miracle drug I think. I should stick with it for a while yet.

[Stevenxx in reply to Str1960]

Cramping tiredness odeama or puffiness around eyes are classic symptoms of imatinib. For some of us the effects get better with time. For others it's with you for longer. Everyone is different however there are now several

Other drugs available to us to a change may be better. Unfortunately I'm am intolerant so the drugs work but I don't tolerate them well do it's a question of finding the best one. I'm 12.5 years down the line.