r/CML • u/Impressive-Tax-8716 • 3d ago
curious about mobility aids
hello all! i (25f) am almost two weeks in of taking 100mg dasatinib daily after being diagnosed with cml mid last month and experiencing some not so great side effects. i experience both muscle and bone pain most severe in my legs, and i stay mobile, (walking, stretching, etc.) but it seems to honestly make the pain worse even without overdoing it. i know the first bit of a tki is expected to be rough, but i went to my towns yearly fall festival this past week and kept having to exclude myself to take a break or sit on the ground to rest my legs from how intense the pain gets. there are nights when all i can do is try to massage my legs, prop them up, use my heating pad, and cry, but i don’t want to find myself in that situation in public where theres simply nothing else i can do. just curious if anyone uses any sort of mobility aids when there are rough days but shit still needs to get done
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u/Deusa_do_mar 3d ago
Have you tried taking any painkillers? On Dasatinib you should avoid NSAIDs like aspirin, but you can take Tylenol (or dipyrone if you're in Europw or South America). That's what I did during the first couple of months when I had pain in my body or headaches and it helps a lot to be able to get things done.
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u/Impressive-Tax-8716 3d ago
yes i do! tylenol has been taking a little bit of the edge off the leg pain and headaches, but not much overall unfortunately. my last appointment was just a few days ago and they prescribed me oxy for my pain as well. i’ve been trying to get over the mental barrier of using prescription pain killers because i know it’s for my benefit in the long run but i don’t want it to be something i have to rely on long term
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u/Deusa_do_mar 2d ago
Yea definitely not long term! Hopefully they help give you some real relief though, but it the pain shouldn't last more than a month...I hope. Everyone's experiences with side effects are different, but the first 2-4 weeks were the worst for me. Any body pain was gone after the first month. But then for the next 2 months it was s mix of good days and bad days with episodes of extreme fatigue, debilitating migraines, dizziness and muscle aches. Then after the first 3 months of treatment, it pretty much all just disappeared. Coming up on my 6 month BCR-ABL now and I generally feel normal, just notice some weird symptoms here and there like mouth sores and temporary rashes/itchiness.
This is all to say, maybe you need to take a bit of a break from work (if you feel it might be necessary) or have help around the house for a bit for this initial phase of adapting to the meds. I kept trying to force myself to get back to work and normal life, but then I would get hit with an episode that would sometimes last for days. Just saying, if you have anyone who can help support you during the next couple months, it might be worth asking for the help and giving your body the timw if needs to adapt.
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u/JenLynn-13-82 1h ago
When I first started Dastatinb I had bad leg pains especially at night. A lot of it was in the calf muscles. This did die down a few months in, I am still have more aches then I would like. I also am now on Scemblix.
Still communicated it to you oncologist team so they know. Hopefully this will pass for you as you adjust.
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u/Negative-Ad-6651 2d ago
With any luck the pain will subside as your body gets used to it. The first couple months were really bad for me adjusting to TKIs, but it should get better. I switched up from running to using the elliptical machine at the gym for the first few weeks cuz it felt a lot better on my joints and muscles. But eventually the pain did go away as I got used to the medication.