Last month I was diagnosed with CML and have been on Gleevec for just about a month now. Everything was fine, no bad symptoms, until about a week ago when I started having pain in knees-hips-shoulders and sometimes stabbing pain. I live in US, am so happy to have a "magic pill" to save my life, but don't know if the pain is related to blood/marrow changes or a side effect of drug. What I am hoping for is that this is a transitional thing. Does anyone know?
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There are countless number of possible side effects from all the TKI's, some common and some not so common. What you are experiencing is not uncommon. Our bodies adjust to the medication over time, so often these side effects you experience are transient. The first 6 months or so are often the worst from a side effects standpoint, so it is important to journal everything you are experiencing and discuss it with your oncologist and your primary physician. Some side effects can be mitigated with other medicine and OTC drugs, but be sure you understand the interactions with Gleevec before you take just anything. And be sure to read the entire circular for Gleevec so that you know what serious side effects are possible that have to be reported right away. Most importantly, do not skip doses and don't be anxious to switch TKI's just because of a few bad side effects as long as they are manageable. You have to give this time. It can be hard sometimes, but if the medicine is doing it's job on the CML that is the most important thing.
Good luck.
Hi Justine,
As already mentioned, these are not uncommon side effects. For many people, they pass in their own time. For others, they don't.
I'm one of the others. Imatinib (Gleevec) didn't agree with me, and I had a lot of bone pain with a sort of 'stabbing' not unlike you describe. I don't know how painful it is for you, but for me it was really not good at all - so much so that we discontinued imatinib, and within a week or two things completely cleared up. I now take dasatinib and have never had the same problem since.
So though this might be a short-lived problem for you, if it lingers and is really bad don't suffer for the sake of it. There are alternative TKIs that may not cause you the same kind of problems.
Make sure to tell your doctor. In my case, I kept a pain diary which really helped me explain to my doctor the problems I was having.
David.