5 replies to this topic

[tinman1939]

(Started Iclusig, or Ponatinib, on April 7, 2014)

 

Wayne's Progress                         BCR/ABL (IS Scale)

April 2, 2014                                     56.6 %

July 3, 2014                                      16.3 %

Oct. 3, 2014                                      54.9 %

Oct. 17, 2014                                    10.7 %

Nov. 24, 2014                                    12.95 %

Feb. 17, 2015                                    10.85%

April 30, 2015                                      8.37%

Aug. 11, 2015                                      1.46%

 

 

Take 30 mg/day. Headed in right direction. The Oct. 3, 2014 result was clearly an aberration, thank goodness.

 

Diagnosed in November 2006.

[Buzzm1]

Congratulations on your continued progress tinman1939.

 

 Is 30mg considered the standard Iclusig dosage?

[tinman1939]

Per Ariad:  The optimal dose of Iclusig has not been identified. In clinical trials, the starting dose of Iclusig was 45 mg administered orally once daily. However, 59% of the patients required dose reductions to 30 mg or 15 mg once daily during the course of therapy.

 

In my case, I started with the lower dose (30 mg. v. 45 mg) with the recommendation of my oncologist and my own uneasiness with starting with the higher dose. This, in large part because of the possibility of heart attacks and other issues associated with the higher dose, which led Ariad to have to withdraw the drug from the market temporarily, before it was reintroduced, with many patients now starting out at the lower dose (like me).

[Wssii]

About to start Iclusig

I have had very limited positive responce to the other TKI's, so now I am reluctantly about to start Iclusig.

I'd like to hear from anyone who is currently taking Iclusig. Any side effects?

[tinman1939]

I had some unpleasant cystic acne breakouts at first, but those are completely under control now (with Zenatane, a form of Accutane). Other than tiredness and occasional soreness (the usual TKI side-effects), there is nothing to complain about. Hope you can start at 30 mg vs. the higher 45 mg/day. The lower dose carries fewer side effects, I believe.

[Wssii]

Thanks for replying Tinman

My Oncologist will start me at 30mg a day
I have been taking Bosulif for just over a year. As with the other TKI's my CBC is not perfect, but manageable. All bone marrow tests show CML, but no signifigant movement toward blast phase. I was diagnosed in 2006 and as stated earlier, have been through the TKI gamut.
My platelet count is down to 55,000, which is about average for me while on TKI therapy. When i go off therapy my platelet levels shoot up to the 100,000 range in a week or so. None of the oncologists are satisfied with the previous responses, as I have never achieved CCR. But, my view is the meds are keeping me alive, albeit not perfect, I am 9 years into this and still kicking! The Doctors dont see it that way, hence the Iclusig.
My biggest concern with Iclusig is the black box warning.