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Imatinib side effects

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Hi all

Having posted a few weeks ago about potentially changing TKI (which I haven’t) and in that post saying I hadn’t really suffered any side effects (just over 2 years since diagnosis) the last month or so I’ve started feeling what I can only describe as ‘woozy’.

I’ve experienced palpitations regularly and got used to them, taking magnesium taurate (on the advice of Scuba 👍) but more recently have started feeling lightheaded, a bit spaced out and just generally off it. Also had some diarrhoea recently too. All routine bloods are normal, and BCR is at 0.16, so CNS thinks it may be the medication.

Only outstanding tests I am waiting for results on are for Diabetes so it may well be linked to that, but if not, has anyone got any similar experience of imatinib side effects? And any advice on how to manage them?

Generally active and healthy (all things considered).

Thanks in advance
Dan

Dan sorry to hear of your side effects. I was on Imatinib for over ten years. In that time I did experience a myriad of problems. I did and still get slight palpitations. I had problems with my eyes and subconjuctivale hemorrhages. Mostly I experienced back pain. That is the one effect I will always associate with imatinib. I’m on Tasigna now and have reached deep molecular response in a very short amount of time like months. There are a whole new set of effects to deal with on this drug. At this point I take it one day at a time.

If the Gleevec gives you too much trouble see if you can switch. Ask your doc.
My only regret is not switching earlier. My doc wanted me to switch to Tasigna years ago but I thought what’s the point I’m gonna be on these drugs for the rest of my life why switch and have to deal with a new set of side effects. Eventually, last year, Gleevec stopped working so I had to switch.

Good luck Dan and don’t despair. It’s my experience that these effects come and go. It’s always something. Like I said take it one day at a time. Something that was bothering me two weeks ago is now replaced by something else and I know in two weeks it will be replaced by another effect. At this point it is my Normal routine.

Pojo

I am a newcomer to the forum, in the UK having been diagnosed some months ago and on imatinib for only two months so I am still learning. I have the heavy eyes feeling that is common, my digestive system has gone from being very reliable to unpredictable, with varying levels of urgency...
I get tired some days, almost like a deep fatigue, but overall, i am positive. I am not having radiotherapy, or intraveinous chemo like some victims of other cancers, and every time I think of the L word I remind myself that I am very lucky to have CML rather than some far worse illness.
Before treatment I had got to the point where I struggled to walk up a small incline, but after only two months on imatinib I am now walking a nearby small hill three times each session.
Like others I feel diferent each day, but being retired means I can adjust each days activity. One area that I am very lucky is that being in the UK means I do not have to worry about a medication bill, or health insurance costs.

I agree with Pojo about the symptoms! Even in the short 6 months I've been diagnosed and on imatinib, my symptoms have evolved and changed. I no longer have fatigue or nausea, and digestive issues are better but now I have other things like hair thinning, muscle cramps and being cold all the time. I am doing what I can to feel my best-- eating well, drinking lots of water, exercise, vitamins-- and am learning to be patient with and accepting of changes in my body. And yes, also agree of all the possible diagnoses out there, I feel pretty fortunate to have gotten the one I got.