5 replies to this topic

[Melb81]

I wanted to find out if anyone on here was taking Ponatinib (Iclusig). I stopped responding to Gleevec after 6 months and then was on Sprycel for 8 years before I stopped responding this past Christmas. The docs put me on a new drug called Ponatinib but I'm not finding any forums or blogs of patients who are taking it. I was very spoiled with Sprycel with very few side effects. This drug is rough....

[chriskuo]

I took it for a few months in 2013 and could not tolerate it. I came off the drug shortly before its approval was suspended.
I went back to a lower dose of Sprycel, then earlier this year to Bosutinib.

Do you know why your doctor skipped Tasigna and Bosulif. Do you have the 315i mutation, which only responds to Ponatinib?

[Melb81]

I took Tasigna for a bit after Gleevec but couldn't tolerate. Based on my history and the way my PCR was going up my docs thought it best to try a more aggressive drug. I am fighting to make this work because my next step would be a transplant. I am trying to hold off until some of these new drugs get approved, hopefully, because it sounds like they attack the cells differently than any of these other drugs.

[PJM]

I took ponatinib after failing Tasigna and Sprycel.  I started out at 15 mg then dosage was raised to 30 mg and finally to 45 mg.  My PCR went down to an all time low of 2.9 but because it rose to 6 my Dr. switched me to Bosulif as of last week. From my experience the side effects to watch out for while taking ponatinib are extremely low blood counts.  Ponatinib made me transfusion dependent so make sure that your Dr. monitors your blood counts regularly.  Currently, my blood is  tested 3x a week.  Also, ponatinib was very  hard on my skin.  It was as if I had a chemical burn from the inside out with redness and constant peeling like I had a bad sunburn.  Make sure you moisturize your skin religiously because my skin got extremely dry while taking this drug.   This drug is also very constipating so stay ahead of that problem by drinking lots of water, having a good diet, and perhaps adding colace daily.  Good luck to you - this is the strongest TKI out there and it has worked wonders for many people, but unfortunately not in my case. 

 

BTW, anyone out there on  Bosulif???

[chriskuo]

I have been taking Bosulif for about 5 months, although my dose was reduced from 500mg to 300mg after I had some issues in the first month.  I just had my BCR-ABL test after 3 months at 300 and it is roughly MMR (my best reading ever).   

 

I would recommend Bosulif to Melb81 and her doctor.  What is your current BCR-ABL level?

[Trey]

Mel,

There are probably about 10 folks here taking Iclusig.  Several because they have the T315i mutation and it is the only drug that works against it. 

 

Starting most of the drugs, even after taking another one previously, can be rough for a while.  You should be able to work through it and see improvement in side effects.

 

What was the best response level you achieved on Sprycel?  What was considered the drug failure point?