6 replies to this topic

[GerryL]

http://investor.aria...86503=#

[Trey]

Iclusig (Ponatinib) is now limited to those with T315i mutation or those "for whom no other tyrosine-kinase inhibitor therapy is indicated".  That means unless the patient has T315i, they must generally fail all other TKI drugs first or else have a good reason not to use one of them (maybe if someone started on Tasigna and never tried Gleevec they could possibly skip Gleevec).  There are also some new warnings which are pretty harsh, and a requirement for more intense pre-treatment heart risk assessment and closer monitoring.

[Cliffee]

I read about it.

A lot of people taking it have had heart issues.

I would be terrified to have to take this one, but I guess if you have no choice it better than nothing.

I just hope there are other TKI drugs in the pipeline that will deal with this mutation and not practically kill you.

[CallMeLucky]

The question now becomes what is more risky, ponatinib or a BMT, assuming you are a candidate for BMT.  I always said I would exhaust all options before BMT, but I'm not sure if I would go on ponatinib at this point with a sibling donor available.  Hopefully I will never have to decide.

[Cliffee]

I'm in the same boat as you.

I'm 46 and have a matched sibling donor as well.

I often ponder on whether I should go for the transplant while I'm still reasonably young. Mayo gave me an 80-85% 5 year survival chance if I went for it now. That doesn't guarantee a normal life afterwords though.

I'm pretty sure I would go transplant before taking Ponatinib if it came down to it at this point.

[Trey]

Mayo is being overly optimistic. 

[mike43147]

Trey,

I too was given about the same numbers for a 5 year survival chance from a BMT from the Mayo.  At the time I had a matched sibling.  That was 4 years ago and 3 TKI drugs.  I no longer go to the Mayo Clinic, they are great people and help me survive my mutation 4 years ago but now go to OSU (for all you Big Ten haters that's "The Ohio State University" no I am not an OSU fan of their football program yes I am a fan of the James Cancer Center)  The problem I see with these numbers are there aren't any current studies being done for people who failed all available TKI's and then had a BMT (or should I be saying a stem cell transplant because I don't know of anybody in the last few years who actually had the old fashion BMT).

As far as the choice between Ponatinib and a stem cell transplant I think, no I know, I would go back to Ponatinib (lower dose than 45 mg).  Then again I was pissed when the FDA took it off the market.  I did not experience any of the side effects that caused it to be taken off the market (other side effects yes I had some for about 18 days).  If I loose PCRU I will have to make the choice, right now I am still PCRU with Bosulif.

Mike