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BCR-ABL results and bloods still dropping

I am on Nilotanib as part of a clinical trial and have had a bumpy start. I had to stop treatment for 4 weeks as my platelets and neutrophils were very low. My 3 month results were therefore a little disappointing.

Cytogenetic - 40%

Molecular - 85%

I am now back on the drugs but my bloods are already dropping again after just 2 weeks. My consultant is hoping to persuade the trial to reduce my dosage if they drop below the threshold again.

Feel a little unsure if these drugs are working for me. I know Nilotanib is an excellent drug and I am lucky to be on it but we all expected (my consultant too) better results than that.

I was on Imatanib for 2 weeks before starting the trial and my bloods dropped on that too.

Oh what a bumpy road this is.

Good luck everyone

Emma x

 

Dear Emma,

I wondered if you are on 300mg x 2 day or 400mg x 2?

This is the recommendation for dosage of nilotinib:

For use in patients with newly diagnosed Philadelphia chromosome positive chronic myeloid leukemia (Ph+ CML) in chronic phase:
Initial dose: 300 mg orally twice daily, approximately 12 hours apart

For use in patients with chronic phase or accelerated phase Ph+ CML resistant to or intolerant to prior therapy that included imatinib:
Initial dose: 400 mg orally twice daily, approximately 12 hours apart

Sandy

 

Hi sandy

i am on 300mg twice a day.

There is talk of dropping it but will need to follow trial protocols so not sure what they will change it to.

Only time will tell

Em