I have been on GLEEVEC for CML for almost 4 years. About a month ago I began having left side back pain starting under rib and extending about 2 inches down my side. I had this pain when initially starting Gleevec but it went away. My last numbers were 0.002. My oncologist states I am in remission and that is why he no longer physically palpates my spleen. Since Covid I have been receiving a test kit to have my blood drawn at my primary doc and will have her look at this. Anyone have a similar issue?
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Left Side Flank Pain
I'm on Sprycel & have experienced side & rib pain but I'm not sure if it's the same type of pain that you are experiencing. For me, it's episodic, not constant; I've had 3 bouts, which have lasted around a week each time & then the pain has gradually died away.The best way that I can describe it is that I feel like I have been kicked repeatedly. It's extremely sore & I have felt like I should be black & blue with bruises but there is nothing there. My haematologist has been baffled & examination, scans etc. showed nothing out of the ordinary.
I'm sorry that I can offer no solutions, & perhaps in fact your experience is very different to mine, but I just wanted to reply to let you know that I have suffered localised & extreme but short-lived pain, on a couple of occasions since diagnosis (I was on Inatinib for the first year then moved to Sprycel; from memory I have had these pain episodes while on each drug). If this sounds similar to you & if I am ever able to get to the bottom of it then I'll certainly get back in touch.
Take care & I hope you get answers soon.
Thank you for your reply. My oncologist says the pain is not from TKI’s but then again he has not experienced it. You have further convinced me that it is as you have been on both drugs. I have had xrays of my ribs which show nothing abnormal and am scheduled to have a CAT scan of my abdomen and pelvic area as I often experience a sense of fullness or bloating which btw is a side affect of T K Is. I’ll keep the forum posted!
Just to follow up, I have had X-rays of left rib area and abdominal and pelvic CT scans. All were normal. The pain varies in intensity but does last throughout the day, every day, and getting into bed at night is painful. Feel like what an electrical pain might feel like. While lying down after the initial intense ouch, the pain will subside unless I move or turn over. The oncologist says the pain occurs when first beginning TKI but then disappears. Well not for me! Cannot imagine living with this for the rest of my life!