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Iclusig and pain with CML

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#1 shof6405


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Posted 04 September 2013 - 04:24 PM

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?



#2 mike43147


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Posted 08 September 2013 - 08:24 AM


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,


#3 Trey


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Posted 08 September 2013 - 10:29 AM

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:


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

#4 acb


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Posted 23 September 2013 - 10:38 PM


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.

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