Is there anyone taking Ponatinib ? I am now on day 25 of 45mg. Would love to hear from someone as to what they are going through with this new drug. I was on Gleevec for the first year after being diagnosed with CML.... really worked well at 400 mg. but due to the skin rash which was invasive squamous cell ca , dosage was reduced to 300 mg which did solve the skin ca problem but lost response to CML.... Have a great team of docs at MDA and Dr. Cortez has now taken over due to my loss of response to Imatinib. Just interested in knowing what others are going through with this drug. It has knocked me for a loop but I am hanging in there although I cannot do much ..... lifestyle has totally changed..... B/P elevated first time ever and am on hypertensive meds.... nausea and vomiting , muscle pain... etc. Doc said of all the side effects , it looks like I have most of them and that maybe within a few weeks the body will get used to the medicine. Am scheduled for an ultrasound of the thyroid as I am showing hyperthyroidism too. Very curious to see what others on this are going through. Encouragement needed.
Anyone on ponatinib?
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Posted 07 April 2013 - 02:58 AM
I went off Iclusig 45mg after 15 days because of highly elevated lipase.
IT has taken over a month to get my lipase down to an acceptable level to
restart this week at 30mg? During the short time on the drug my log reduction improved
about 1 log from the best level I got to On the other 3 drugs.
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Posted 07 April 2013 - 06:18 AM
I am anxious to see what it is doing to the Leukemia cells . I will have my first bone marrow biopsy the first week of June after being on it for 3 months. So far, Lipase level is good but the second week on the drug my ALT and AST doubled . Then , the third week they were back to normal. So far, the only thing on my labs that has gone haywire is the thyroid.... HYPER..... and who knows whether that would have happened with or without the drug. Will find out his week what the doc will do about that. I am feeling much better after pill #29. So, I am really encouraged that as the body gets used to the drug, it will level out on the side effects. One patient at MDA told me that he had to be hospitalized with pancreatitis after one week of 60 mg. He was then reduced to 45mg and he was there for his bone marrow biopsy . Do not know the results of it but he said he had absolutely no side effects at the 45mg level. Sure hope you will have none at the 30mg level and still get a good log reduction. Keep me informed. Saying a prayer for you.
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Posted 07 April 2013 - 10:50 PM
Hi there,
I just started Ponotinib about 7 weeks ago, but at only 15 mg per day. The first 5 weeks were hell, pain and dehydration and nausea. Just started to acclimate to that when my left foot swelled up to 3 times its normal size (some weird autoimmune thing, probably tied to the P) and the next day after going on prednisone for that, I passed a kidney stone (probably from being so dehydrated said the ER doc).
It does get better............but then I am on a baby dose. I was on Sprycel for 2.25 years then became intolerant so we are trying this one.
Apparently, last thursday's blood work showed that my WBC is up to almost 12k, but that is probably due to the prednisone, as the PCR has come back as undetectable. Yay. Hoping to stay on this tiny dose as long as possible.
Good luck, and do go to the facebook page, there are about 30 of us on it, so you get really good information. Most have been in the trial phases, but there are a bunch of us newbies too.
--Caroline
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Posted 07 April 2013 - 11:31 PM
Caroline,
How soon after starting ponatinib did you notice the side effects?
What was you PCR status under Sprycel and what was the intolerance?
Thanks for you message as I am looking to restart ponatinib on a lower dose. During my first start at 45mg, my side effects were very high lipase and dry/flaky skin.
I did not experience the pain, dehydration, and nausea during the time I was on it.
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Posted 08 April 2013 - 06:53 AM
Caroline,
Wonderful that your PCR is back to undetectable. Will find out what mine is in June. Side effects are definitely leveling out at day 31 on 45 mg. Hang in there.
Norm
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Posted 15 May 2013 - 07:03 PM
Sorry to take so long to respond, I don't check here often, I am more active on the facebook page for ponotinib that Hans has set up. My PCR was undetectable, I stopped taking Sprycel because of the side effects. I felt the side effects of Ponotinib immediately. I was severely dehydrated within hours and the pain lasted quite a while. I am only on 15 mgs, which is also keeping me at undetectable status. I continue to struggle with fatigue and bone pain.
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