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Imatinib side-effects

On imatinib, I have been stuck on a 0.5 per cent plateau. I have been told by my consultants not to blame all side-effects on imatinib.

However, I have been on dasatinib for five weeks and five side-effects have disappeared completely:

[1] musculoskeletal problems;

[2] night sweats. Turning the pillow over several times a night;

[3] persistent cramps;

[4] major gastrointestinal upsets;

[5] the feeling of coldness even when swimming in 28°C water.

I do hope that this isn't the calm before the storm. I have been warned about the possibility of pleural effusion.

So when people say, "you cannot blame imatinib for all ills" they may be far off the mark.

Nimbus - I have noticed, anecdotally, that people who have been quite bothered by side effects from imatinib seem to lose them on dasatinib; the reverse also seems often to be true.  So, yay for you being free of them!  I also think your PCR will show a big jump off that plateau real soon, as there seems (again, anecdotally) to be the same imatinib/dasatinib difference with people - those slow on imatinib seem to zoom down on dasatinib.

Thank you, Kat. That is very encouraging. Unfortunately, I will not have blood drawn again until 12 weeks after starting dasatinib and I will then have to wait six weeks for analysis. The normal probability for the success of a first second-generation TKI following imatinib resistance/failure is 50% but my haematologist thinks that my chances are higher because I have come close to achieving a major molecular response. Theoretically, the probability of the success of a second second-generation TKI reduces to 25%.

Good day. I have been on Imatinib for a year.Now gone from . 48 to 1.1. Dr wants to change my meds to Tasigna.Will decide in 3 months time. Anyway I just want to mention my experience with side effect of water retention on Imatinib and fasting.As long as I fast intermittently and severely restrict carbs I dont retain extra fluids and dont need a diuretic.Just my own observation.Thank you for all your valuable input.It has kept me standing through a very stormy year after diagnosis!

Hello Rozeanne. You appear to be in a similar position to me where the consultant is hesitating as to whether to change the TKI. I came very close to achieving a major molecular response at 0.15% but I seem to return to a plateau of about 0.4%. At 18 months, the consultant decided to change the TKI. 

Well, fortunately test results dont seem to change very quickly or dramatically when you have cml...at least I lost that fear.It gave me many sleepless nights in the beginning!I try not to think of it at all until the next PCR.

Any solution for feeling of coldness?winter is difficult for me so is the summer.

I do not have a solution. I think that "feeling cold" is not recognised as an imatinib side-effect. I was feeling very cold whenever I got into a swimming pool typically heated to 28°C. I bought a neoprene jacket to wear while swimming. But I still felt cold at the extremities, feet and hands. Then I was changed to dasatinib and the problem disappeared immediately.

The haematologists say, "you cannot blame imatinib for all ills". I understand the statement, but I think that imatinib potentially causes its users with many problems.

"Numb or cold toes and fingers" is a recognised uncommon side effect of imatinib (see package leaflet - https://www.medicines.org.uk/emc/files/pil.5566.pdf)

Its really difficult for me (psychologically too) when people around me enjoying while i have feeling of coldness(some time unbearable)

Thanks,i checked about raynaud's syndrome .

I also get these side effects on nilotinib. When Im cold 2 of my fingers will go completely numb and white, the blood vessels will constrict so that there is not blood at all (almost).

I can also see it in my male organ when I come inside from outdoors. It can be upseting to see it partially constricted, looks very unnatural and discouraging.

I think that you cannot do anything about these kind of side effects but to warm your hands and body in general.