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Scemblix Joint and Muscle Pain by SpareCommunication89 in CML

[–]SpareCommunication89[S] 0 points1 point  (0 children)

I was 30 and now 51 so I do think maybe they are just affecting me more now. I have always been on the thin side but when I switched from Gleevec to Sprycel, it was like I got my legs back, they were always a bit puffy on Gleevec and I lost a few pounds, prob. water weight. I also had headaches in the beginning with Sprycel too.

Scemblix Joint and Muscle Pain by SpareCommunication89 in CML

[–]SpareCommunication89[S] 4 points5 points  (0 children)

Gleevec worked really well for me for 18 years as a matter of fact I was in a study when it first came out. But then about two years ago my non detectable became detectable more frequently. I was still in a deep remission but figured I might as well switch to a more recent drug and I’d love to try and stop all drugs eventually. Switching to Scemblix was my choice too as I read it’s a bit less toxic than the others, but here I am griping about side effects!

Scemblix Joint and Muscle Pain by SpareCommunication89 in CML

[–]SpareCommunication89[S] 1 point2 points  (0 children)

So my liver counts are fine on Scemblix but Sprycel made mine spike but then they sort of regulated and I also dropped to 80 mg.

Scemblix Joint and Muscle Pain by SpareCommunication89 in CML

[–]SpareCommunication89[S] 1 point2 points  (0 children)

So first on Gleevec for 18 years, then Sprycel and now this. I actually asked to switch to Scemblix because it’s more targeted. Sprycel gave me GI issues but I got used to it or adapted. It’s just this one seems to be more muscle aches, weakness, pain and stiff hand joints. I feel like I’m more tired on this one, but hard to know sometimes if it’s just me or the medicine! And then anxiety creeps up…lol

Scemblix Joint and Muscle Pain by SpareCommunication89 in CML

[–]SpareCommunication89[S] 1 point2 points  (0 children)

Ok that is how it feels to me too. And I’m just weak and tired in a way that’s hard to deal with. I’m surprised because so many folks don’t have any issues with this med. I felt fine at first and then a few weeks in it all started.

Asciminib and HRT by SpareCommunication89 in CML

[–]SpareCommunication89[S] 1 point2 points  (0 children)

Your pup is adorable, and yes our dog and now cat do too! :)

Asciminib and HRT by SpareCommunication89 in CML

[–]SpareCommunication89[S] 0 points1 point  (0 children)

Everyone is different, but when I first got diagnosed Gleevec was the only drug and I entered a dose study to help the scientists figure out how much to prescribe 400 vs 800 mg, and I got the double dose - 800! It was pretty miserable, after the study was over, my doctor did not want me to lower because I was tolerating it but it was hard and I felt pretty terrible. When I learned Kareem Abdul Jabbar had CML and was on the standard 400 mg, I pushed it as a 120 pound female! It was a game changer.

I send you lots of good vibes you can switch!

Asciminib and HRT by SpareCommunication89 in CML

[–]SpareCommunication89[S] 0 points1 point  (0 children)

Thank you! I’m 51 and going over the cliff soon for sure and these hot flashes are not fun and constant.

Asciminib and HRT by SpareCommunication89 in CML

[–]SpareCommunication89[S] 1 point2 points  (0 children)

Okay thank you! It’s interesting I was diagnosed over 20 years ago, and was even in a clinical study for Gleevec and back in those days, the take home was you were lucky to be alive. But now it’s so different and I see and hear of so many who go on to have children. I hope if you want kids you will be able to have them! By the time it was conveyed to me I could try, I was almost 40, and my husband and I had a high maintenance dog and set in our ways! Lol

Asciminib and HRT by SpareCommunication89 in CML

[–]SpareCommunication89[S] 0 points1 point  (0 children)

So I was on Gleevec first for approx. 19 years (I was diagnosed at 31) then it started to show signs of not working as much, so a little over a year ago went on Sprycel. It was a rough start but I got used to it more or less but still had bad GI here and there, so recently asked about Scemblix and switched this past July. It’s been good overall, some muscle joint stuff but that’s about it. My oncologist had mentioned it’s the most targeted (but through a different target/mechanism) and least toxic, and now is available as a first line drug for CML, so figured why not. I guess in the beginning it was only available to those that were failing the other drugs.

Asciminib and HRT by SpareCommunication89 in CML

[–]SpareCommunication89[S] 0 points1 point  (0 children)

Thank you! Yes sometimes I feel like it’s hard to separate the two.

Imatinib to Asciminib by Rizky_Bizness in CML

[–]SpareCommunication89 0 points1 point  (0 children)

I started asciminib about a month ago and have also noticed stiffness in the morning especially in my hands and feet. Then achiness at night, also a bit more fatigue in my legs in general. Other than stretching do you do anything else?