Anyone have long term side effects on Gleevec for CML?

Posted by sodowd @sodowd, Jul 12 9:35pm

I have been on Gleevec for 11 years. Wondering if anyone has had any long term side effects. Currently I have been having severe muscle pain for about a year now mostly in my legs. Nothing is working to ease the pain. Oncologist suggests to go off of Gleevec to see if this is causing the issue. I refused as the leukemia has shown up very minimally in labs 3 times in the last couple of years. I want to keep it at bay.

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bonestrength57 | @bonestrength57 | Jul 12 9:44pm

My husband was diagnosed with CML IN 2008. He is in remission now and has been off Gleevec for about 4 years now. He had the leg cramps. And still does at times. He drinks apple cider vinegar in his drinking water every day. It seemed to help him some when he was taking Gleevec.

Lori, Volunteer Mentor | @loribmt | Jul 13 10:16am

Hi @sodowd. The severe muscle pains your having sounds awful and has to be really chipping into your quality of life right now! So, the mystery is, ‘What’s causing them?” You’ve been taking Gleevec for 11 years for your CML with positive results but your doctor is concerned that the medication may be responsible for your muscle pains. They would like you to take a little sabbatical from Gleevec to see if it is the culprit. It’s understandable that you’re hesitant to pause the medication because it’s been working well to keep the leukemic cells at a minimum.

From my understanding, it’s not unusual for some patients who’ve been on Gleevec for many years to take a break from the drug if they’ve stayed in remission or had very low disease levels in their labs. Here is an article from Patient Power you might find reassuring about stopping Gleevec for a short time. https://www.patientpower.info/chronic-myelogenous-leukemia/treatments/can-patients-with-cml-stop-therapy-safely

Considering your disease levels are consistently low on labs, your doctor seems comfortable with this experiment of being off the drug for a month or so to see if your severe muscle pains go away. I would think that’s worth a shot to have some relief! There are also several alternative drugs which can be used for CML if the Gleevec is responsible for your leg pains.

You don’t have to suffer needlessly. I think this would be a good compromise for you to try your doctor’s suggestion for a while to see if it works! From what I’m reading some people can be off the drug for a longer time and then resume if there is a rise in the leukemic cell numbers. Just a thought…

What do you think? Will you have another chat with your oncologist?

Lori, Volunteer Mentor | @loribmt | Jul 13 10:28am

In reply to @bonestrength57 "My husband was diagnosed with CML IN 2008. He is in remission now and has been..." + (show)

Hi @bonestrength57 Welcome to Mayo Connect. Thank you for jumping into the conversation about your husband’s leg cramps associated with Gleevec. That was really good timing with @sodowd recently posing the question!

Interesting that the apple cider vinegar in his drinking water daily helped ward off the leg cramps! ACV has some unexpected but helpful side benefits!

That’s really fantastic news that your husband has been in remission since 2012 after taking Gleevec for 4 years CML. How often does he have follow-up labs?

bonestrength57 | @bonestrength57 | Jul 14 8:23am

My husband has labs and follows up with the oncologist at the VA every 6 months.
This will be on going since he’s in remission and no longer taking Gleevec. His doctor keeps a very close eye on him. She’s amazing. Calls him personally with results.
From day one; He has always responded well to Gleevec.No cancer can be detected even as far down as the molecular level.
That is why he was a good candidate to be taken off the drug.

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