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Taking Iclusig (Ponatinib)


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#1 mike43147

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Posted 22 June 2013 - 08:19 AM

I just took my first pill of Iclusig (ponatinib).  Like the Iclusig retail name better than the Ponatinib.  Ended 3 years on Tasigna, at least I don't those two three hour periods of no food any longer.  I like to know who is using Iclusig and what kind of response you had or side effects. 

Have a nice weekend.

Thanks,

Mike



#2 susanlathers

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Posted 22 June 2013 - 12:34 PM

Mike

  I too would like to know others experience on Iclusig. It that the only drug available to go to when you have been thro the other 3?  I would like very much to get off the Tasigna, been on it 3 yrs, PCR rising and it has caused diabetes. Why did you switch?  How long diagnosed?  Did you go thro Glevec, Sprycel and then Tasigna? 

Lots of questions

Susan



#3 momruns

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Posted 22 June 2013 - 12:35 PM

Hi Mike,

I posted back a few days ago regarding Iclusig.  There is also I facebook page that is only for Iclusig users.  It is a closed membership which is nice.  I learned a lot from that page.  It is very positive.  Most of them have been on the trials and the rest are like me, just starting out after failing on a few drugs.  I think there will be more of us in the future.  According to ARIAD the makers there are currently only 2300 of us on it. 

Loreta



#4 holygeez8

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Posted 22 June 2013 - 04:08 PM

I went from failing Sprycel to Iclusig and in 2 months it took me from 75% to 1.4% on PCR.  My fish is 0.  So it has definitely worked for me.  I have been taking it since November and I have my next set of tests in mid-July.  I was 5 days away from a BMT when I found out that the Iclusig worked.  It did make me really sick in those two months since it was working so hard.  The Doc though it wasn't working, therefore the BMT option, since I had gotten so sick while on it. 



#5 mike43147

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Posted 23 June 2013 - 06:35 AM

Susan,

My journey started Dec 6, 2007. I failed Gleevec, Feb 2010.  Was on Sprycel (for 30 days no side effects).  Then 3 years and a few months on Tasigna without any real bad side effects.  I have a mutation (F317L).  According to the documentation, at that time, Sprycel would not work on that mutation so I went to Tasigna.  I was matched for a BMT and was on the last day of the pre-transplant testing when I was told they were pausing the transplant.  That was June 20, 2010.  According to the doctor there are 2 other drugs, other than Iclusig, recently approved.  Iclusig is used when there is a mutation.  I was switched because I was not getting the response the doctors wanted and my numbers were starting to increase.  About 12% on the IS.  I don't need to fail another drug, like I failed Gleevec.  You can go downhill real quick and it's not the place any of us want to be.  

The new oral drug starts with a B but I can't spell it (might be bositnib).  I was told it's used on people who don't have any mutation but have failed or could not tolerate the older TKI's. 

There is a new injection drug that is really an old drug reformulated.  It's an injection done twice a day for 14 days.  Then I think you're drug free for 21 days.  You do the 14/21 days until you get the response the doctors are looking for then it's 7 days of 2 injections a day and 21 days drug free.  I was told this costs about $200000 per year.  So not many people going to be using that route. 

That's my short story.  So far nothing out of the norm with Iclusig but it's only been 2 days.  We will see how things go from here.

Mike

PS, anybody hear from PhilB?  I miss his humor and his discussions with Trey.






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