3 replies to this topic

[shof6405]

Hi!  I am getting ready to start Iclusig.  I was diagnosed with CML in April 2013.  I have been on Hydrea, Gleevec, Tasigna and back to Hydrea.  The MD suspects that I have a mutation that was keeping the Tasigna from working.  The results are not back yet.  While being on the aforementioned drugs, I have had nausea, vomiting, muscle pain, joint pain, chills, night sweats, headaches, stomach pain, dry skin and hair loss.  I know some of these symptoms are from the chemo, but some from the CML.

I am wondering two things:

1. Has anybody had problems with pain due to the CML or the chemo?  Does it ever get better?

2. That kinds of problems has anybody had with the Iclusig?

Thanks,

Annette

[mike43147]

Annette,

Once the doctors has the results of the mutation test they will determine which drug to use next. 

I have been on Gleevec (failed because of a mutation), Sprycel (did not work for the mutation I have F317L), 3 plus years on Tasigna (never reached undetectable), now Iclusig (because of the F317L mutation).  I have been on this drug about 90 days, 45 mg per day.  Everything was fine for about 2 weeks.  Then the pain started, lasted about 3 weeks.  For the last 6 or 7 weeks no pain and from the start, June 20, until the last PCR test about 60 days after starting Iclusig, my numbers on the IS scale, have dropped from 10% to .0191%.  Next PCR test is in 11 days. 

I started on the highest dose of Iclusig.  I have heard that others have started on less of a dose so their bodies get accustomed to the drug.  That would be my suggestion from my experience, but I am no doctor.  You will need weekly blood tests for the first month, from company website.  Then for the next 2 months the test are every 2 weeks, again my experience.  Hopefully in 11 days the results will be good enough that I can go back to once a month (or every other month), arms are getting beat up from getting stuck so much. 

If you start taking Iclusig make sure they monitor your liver, kidney, and pancreas numbers.  I found out my pain was caused by my pancreas swelling which has since gone away.  Make sure you get a pain medication just in case.

Good luck,

Mike

[Trey]

You can find more discussions about Iclusig (Ponatinib) by searching on the word Ponatinib on this site.  Here is one such post which might help:

http://community.lls.../message/162193

Please let is know about the mutation test results when available.

[acb]

Annette,

I replied to your other post but just saw this one from a few weeks ago. I am guessing that your counts must be rising significantly or Dr. Herzig would not have put you back on Hydrea. And I am also guessing that Inclusig didn't get a good enough response over the past 3 weeks?  Did you get the results of the mutation test you mentioned here? Have you tried Sprycel (or was it not used because of a certain mutation)?

I hope you are able to get some answers. As I mentioned in my other post, I was a patient of Dr. Herzig when I was first diagnosed, but had to switch to a different oncologist due to insurance. Please let me know if you want someone local to talk to.