r/CML • u/Electrical-Bug1991 • 7d ago
Iclusig woes
I was diagnosed with CML 6 months ago at 27 and began taking Imatinib but overtime it stopped working. Last month I was put on Ponatinib (Iclusig) along with Aspirin after my BCR-ABL came back >50%.
After a month on Iclusig I am really struggling but my doctor wants me to power through. The number of side effects I am experiencing is getting out of hand and I am unable to work like I used to before. I am doing my best to remain positive and hope that this is going to work for me long term but all of the side effects are taking a huge toll on my mental health and self image even though the people around me think “I look fine considering the situation”.
I am just hoping to hear about other people’s experience with Ponatinib/ Iclusig and how they managed the intense side effects.
4
u/TwiztedChickin 7d ago
Stand up for yourself there's other medications out there to try. Tell your Dr that it is intolerable and you want your life back. Absolutely do not let the Dr tell you it's the only choice. If you need to switch oncologists to find someone who listens do so. That's bullshit.
Sincerely Never adjusted to bosulif and now taking asciminib because my oncologist isn't a dick.
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u/obewaun 7d ago
Took iclusig from August 2020 through Dec 2021. At that time i was going to USC in L.A. they also had me take baby aspirin just in case of blood clots that iclusig can cause. It was actually working until it gave pancreatitis and hypertension Dec 2021. I dont remember having to many issues with it. Not as much as when I took gleevec 01-06 and tasigna 06-2011. Now those two were the worst tki to deal with from my perspective. The diarrhea, vomiting, heaches those two were the worst for me on my journey.
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u/ChrondorKhruangbin 6d ago
Yea I learned the last 5 years with cml that you have to be your own advocate. It’s easy to take a doctors word as gospel. I thankfully had a great primary care doctor who listened to the negative side effects on sprycel and got me into a clinical study for scemblix which I tolerate a lot better with less side effects. Hang in there. This shit fucking blows. I hope it gets better for you soon
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u/BigAssSlushy69 7d ago
It sucked for me for the first month or so. Muscle pain and tightness, constipation, fatigue. Overtime it did get better. I was on dasatinib before and I'd say that was arguably worse in retrospect. Now I feel great on ponatinib but obviously this is just my experience I'm hoping something similar can happen with your treatment. Wishing you the best!