I was diagnosed with CML in Jan 2021. On Imatinib for a year (changed due to side effects). Then Dasatinib for 3 years. Stopped due to huge plural effusions on both lungs found after a few months of being unwell, cough, losing weight and shortness of breath. After lung aspirations and a lung biopsy they thought initially it may have low grade B-Cell lymphoma but then decided it was caused by the Dasatinib. Therefore, cannot go back onto Dasatinib. Been off treatment now for 7 weeks.
About to start Asciminib in the next couple of weeks. Any insight into what to expect as side effects or in general would be appreciated. Also further treatments after Asciminib should this not be tolerable also.
My bloods and BCR/ABL have all been good whilst on Dasatinib.
Thank in advance.
Hi Tina
I have had CML since February last year and since then I have been on Imatinib, Bosutinib and now Asciminib.
Imatinib made my white blood cells go too low and the Bosutinib badly affected my liver. I have been on Asciminib since September and all my bloods have been fairly stable. As far as side effects go I have had a skin rash on my neck, very mild, not particularly nice looking but not irritating. My liver levels aren't perfect but they aren't enough to stop the medication.
It's really hard to know how we will react to these medications but the only way to know is so start taking them!
I hope that helps a bit! A x
Hi Tina,I was diagnosed with cml in July 2023 and started on Imatinib but because of side effects changed to Dasatinib in 2024.Unfortunately the side effects on this drug were as bad as the Imatinib.I was taken off the drug and because my white blood cell count increased greatly started taking Asciminib.I have been taking them for a month and am not experiencing the side effects that I was.
I hope you find the asciminib works for you and wish you well.Regards PJ49.
Hi
Thank you for replying. Yes I agree, the only way to tell is by starting the drug. I have an appointment Monday to consent and pick up my medication after 8 weeks off Dasatinib so will see how I go. Expecting a few hiccups along the way but as long as it keeps my numbers good without to may unmanageable side effects that will be good.
Hope you continue to do well.
Tina
Hi PJ19,
It's strange how we all differ isn't it. Imatinib was horrendous for me. I persevered for a year and then had to fight to be changed to dasatinib. Dasatinib will brilliant for me, on it for three years and manageable side effects until the plural effusions earlier this year which have made me so unwell.
Hope you continue to do well on Asciminib and it keeps working for you.
Tina
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