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Moving to Ponatinib, any advice?

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My monthly blood test (22 Nov '22) unexpectedly showed elevated blood counts after months of counts approximately around the same levels.

The results were so unusual for me that the assumption was that it was a lab error. However when the blood test was repeated the results were approximately the same.

The next day I had a bone marrow biopsy, bone and fluid, and we're waiting on results to see what is going on. The suspicion is that there has been some further mutation.

It was such a shock. My last PCR on 26 Oct was 0.03, my lowest ever since I'd been diagnosed in Nov 2016.

I was on 70mg Sprycel and Neupogen to support Neutrophil count and Revolade to support Platelet count.

In a month my counts went from HB 9.6, WC 5.1, Neutrophil 2.71, Platelets 54 to HB 9.6, WC 16.0, Neutrophil 7.16, Platelets 278.

My consultant is suggesting we try Ponatinib, having failed to respond to Imatinib and developed a rash while on Bosutinib.

I'd been on Sprycel since 2017.

Looking through the forum some people suggest starting on low dose Ponatinib eg 15 mg. My consultant is keen to hammer any potential mutant LSC and wants to start me on 45mg.

 

Any advice from those currently on Ponatinib?

 

Have your counts always been low and required neupogen and revolade?  Also you mentioned additional mutation.  Is that because you were already dealing with one, or in addition to the CML?  Was it 100mg of Sprycel?   I was on Sprycel for almost two years and never reached MMR.  It does not always work as one hopes but I was on 100mg and may have had better results on a lower dose (there is some research to that effect).  I think waiting to see what is going on with the biopsy before starting 45mg Ponatinib is probably the best option in addition to a second opinion to make a better educated decision before proceeding.

 

This has been a long journey on Dasatinib trying to find a dose that will be efffective without overly depressing the other blood counts. Up until now I thought I only had the Philadelphia chromosome. This is so disappointing as I had finally reached a PCR of 0.03.

I started Dasatinib 50mg on 31 Oct '17. At first we stopped the drug or reduced it in several cycles as and when the Neutrophil count dropped. Neupogen was introduced in 22 Aug  '18. Revolade was introduced 8 Sep '20 to support the low platelet count. Any time I came off the Dasatinib the PCR increased. 

Under the microscope there are blast cells in the blood sample (less than 20 % I think). 

I've had two tests for mutations in previous years which showed nothing.

I have another blood test Wednesday  30 Nov '22. Her concern is not to let the blood counts multiply out of control. We'll both know more then.

My consultant is concerned that I am moving into the accelerated phase of CML; that there are other clones.  I only had the biopsy done last week and we're waiting on the results. It's difficult to get hold of Ponatinib here so that's why it has been ordered. It will take more than a week to arrive. 

Thanks fo your advice.