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.

gillispie7 | @gillispie7 | 3 days ago

My husband was diagnosed Dec 2011, and put on different drug with horrible side effects. 6 months later it was Gleevec (not generic) with few side effects off and on. When insurance changed he went on generic, about 3 yrs ago and although in almost complete remission, his vomiting, fatigue and dizziness is almost constant. All other tests look good, but he's getting worse. Has anyone gone through this and have suggestions? He's is anemic now and depressed. Goes to The James, so has good doctors. I don't know how to help him and it's not fair

Lori, Volunteer Mentor | @loribmt | 2 days ago

In reply to @gillispie7 "My husband was diagnosed Dec 2011, and put on different drug with horrible side effects. 6..." + (show)

@gillispie7
Oh my gosh, your poor husband! Can’t imagine how awful he feels on a daily basis with vomiting, fatigue and dizziness. No wonder he’s feeling depressed!
It’s great that the meds are working to keep his CML under control but his quality of life is certainly not reflected in this success!

You mentioned he wasn’t having any issues on the non-generic Gleevec. While generic drugs contain the same active ingredients and are required to meet the same standards for safety, effectiveness, and quality, I’ve found in my own health that there are differences. There was a drug that I was taking in my own health journey. I reacted horribly to the generic version. My doctor wrote a narrative to the insurance company and I was able to get the brand named drug covered. No issues after that.
Sometimes we have to be the squeaky wheel!

There are also other medications for CML such as Imatinib (Gleevec, Imkeldi)
Nilotinib (Tasigna, Danziten)
Dasatinib (Sprycel)
Bosutinib (Bosulif)
Asciminib (Scemblix).
Each person has their own chemistry and some meds work better for some people than others. Often when there are side effects with one drug, switching may help alleviate the issues.

I’m sure you’ve discussed these ongoing, debilitating side effects with your husband’s doctors. Are they not concerned?

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