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CML symptoms persisting

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I was diagnosed in December 2018 and I have been doing great (my bloodwork has been good). I have been on 400mg nilotonib for about a year and a half now and have no complaints except maybe this: I still have some CML symptoms, it seems. What bothers me most are the night sweats and bone pain in my legs.
Is this normal? Are any of you also still experiencing symptoms after so long?

mbrit, if you are in a position to do so, reduce your dosage; it should lessen any side-effects that you are experiencing.

Hi,

Please can you share your blood test results... especially your PCR results. Also, I assume you are taking 400mg nilotinib two times a day?

Was nilotinib prescribed as first line therapy or were you treated with a different TKI when first diagnosed?

Sandy

It's unfortunate that this forum doesn't have an interactive profile page so that everyone could post their CML history and keep it updated ... it eliminates a lot of unnecessary repetitive questions.   Individual posting histories also provide a strong boost..  

My BCR/ABL was 0.0037% in December and I take 200mg nilonitib twice a day. I'm sorry about the confusion.

I started out with imatinib but it didn't have the desired effect at 6 months so my hematologist put me on nilotinib and it has worked better.

Your PCR result shows your response to nilotinib is very good... you seem to be on a low dose? Normally the dose for second line (after sub-optimal response to another TKI) is 400mg twice daily. 

Given the very low molecular level of your disease... 0.0037%, it is more likely that your night sweats and leg pains could be attributed to the side effects of TKI therapy rather than persisting symptoms of CML.

Have you talked with your doctor/healthcare team about your side effects and how they might help you address them? 

Sandy