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Setback with imatinib, now on Nilotinib

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Hi guys.
Hope you all are doing well!

I was diagnosed this February.

At diagnosis, BCR / ABL was 44.3 and WBC was 94
After 1 month of 400mg imatinib BCR / ABL was 25, WBC 2,14 , but Plt raised to 537
After 2 months of 400mg imatinib BCR / ABL was  19,9, WBC 2,81 , but Plt raised to 745
3rd month the BCR / ABL result jumped to 37.3,  WBC 7,53 and to Plt 1400. After that, a new bone marrow sample was taken. No mutations were detected. My hematologist prescribed me a new medication – nilotinib 400mg /twice a day.  I have taken nilotinib almost for a month now.  I haven’t had any major side effects except maybe some fatigue but that can be also because of the stress (work + family + new situation etc).

of course, this intermediate setback made me very anxious and worried. Now I have been taking nilotinib every day for 30 days (400mg /twice a day), I have also taken 3,000 IU / day of vitamin D3, and this week I went for blood tests again. The results were that Plt had fallen down to 218 and BCR / ABL, which started to raise from 19.9 to 37.4, had fallen to 33.6. the decline is not large, but must remain positive, that is still a decline and I have to give time for the drug to act.

I just wanted to share my situation with you and if anyone has any thoughts and similar situations / solutions I would be very grateful!

Andre

Hi Andre,

I does take time to adjust. Your cbc looks good now you have switched to Nilotinib. Like you I had high platelets at diagnosis 900 or something and wbc of 330. All have been normal for the 2 years that I have been on Nilotinib. I think maybe your rise in BCR is when you came off imatinib to go onto Nilotinib. How much time did you have with no meds between the switch as I’d be inclined to guess that’s why you’ve had a rise and now a fall albeit a little. Nilotinib works identically to imatinib but it’s more potent so I am sure your numbers will continue to drop. I’ve had fatigue on 600mg Nilotinib but it seems to cycle. I can have weeks and months with no fatigued then bam it can hit and lasts for a while. I just got out of a bout a while ago but could also be linked to stress and anxiety as they cause basically everything to shutdown and all you want to do even after a good nights sleep is just kip.

Hang in there

Alex

I would look into Dasatinib instead as Nilotinib approaches the disease very similarly as Imatinib.  It may require being on the phone for a while and possibly arguing with your oncologist but it is very important to get BCR/ABL numbers down early (3-6 months).  It is great that you are having no side effects but my thought is that Imatinib really did not work so a total different approach is not the worst idea.  I apologize I don't have a link showing how Nilotinib approaches disease similar to Imatinib.  That is just my thoughts but that doesn't mean your numbers won't go down on Nilotinib.  Just another factor to consider is all.  Hope you have great success in the months to come.