6 replies to this topic

[Megz]

Hi everyone,

I know it's been a while, I have a few questions about Ponatinib. I'm starting with 45mg tablets of Ponatinib SID tomorrow and i'm nervous about what to expect. I originally was on Tasigna 300mg for 6 months and it stopped working, then Gleevec 400mg for 6 months and it stopped working so they upped me to 600mg of the Gleevec but the i was throwing up so much that I wasn't getting a theraputic enough dose to even see if the higher dose would work, not to mention all of the other lovely side effects. My oncs did the mutation testing and luckily there were no mutations detected. Their theory on why the Tasigna and Gleevec treatments stopped working has to do with a genetic disorder called "Incontienta pigmenti" that I have as well. The theory is that the drug works initially and some where down the line (Usually after 3 months) the two genetic issues cross paths (the IP and the Ph+ CML) where the treatment is stimulating the IP to increase cellular production which is cancelling out the effectiveness of the treatment and then causing it to eventually be ineffective. It's a theory, there is no information or evidence to back up this theory, because, well, there is no infomation about IP and CML together. Anyhoo i'm pretty stressed out about trying the Ponatinib, maybe because I've had such a hard time with the TKI's. My onc is exhausting every option before there's any thought about doing a BMT. Anyhoo I'm just looking for some reassurance and what to expect from some others who have been where I am with failed TKI treatment and now being on Ponatinib.

Thanks,

Megan

[CallMeLucky]

Sorry you have this trouble, I have no experience with ponatinib, but I have had two doctors who were involved with trial tell me that they think it is an amazing drug, and that they could see it becoming the drug of choice to treat CML in the future.

There are a few on the forum who are on it, and they have said it works well and side effects are manageable.

Best of luck to you, I hope this drug does the job....remember even if it doesn't there are still other options.  Gleevec and Tasigna are chemically similar wheres as Sprycel works differently.  So Sprycel could always be an option to try too.

[Thomas177]

You have group for CML patients taking Inclusig(Ponatinib) on Facebook https://www.facebook...787828/?fref=ts

[chriskuo]

No experience yet bit I am starting Iclusig today.

[HPL]

Hi Megz,

I have been on Ponatinib for over 3 years now, and I know a couple of people who have been on it even longer. I am in the Phase 1 trial, and reached CMR at about 1 year into the trial. I do have the T315I mutation, but I know of others who are getting great results, who did not have a mutation. In the trial data, good responses were seen in both the mutation category (T315I) as well as those without mutations.

As for what to expect, it is similar in side effects to existing TKI's. Low platelets is common, skin issues, also things like fatigue and bone pain. Most of these issues show up early on, and go away, but there are cases that this can happen much later in treatment as well. Everyone reacts different to the drug. I do moderate the Facebook group for Ponatinib users, so if you are interested, go ahead an join. It's a population of patients on Ponatinib who share their day to day experience.

Facebook https://www.facebook...787828/?fref=ts

Best wishes,

Hans

PS. I'm obviously a big fan of the drug, it has allowed me to live a completely normal life. If I may bore you, you can take a look at this video on what Ponatinib has done for me http://www.patientpo...-a-miracle-baby

[andrew1403989321]

Hi Im Andrew,

was diagnosed with cml dec.25 2013. im 35

I was put on Ponatinib as a first response in a new study, 45mg a day. for chronic phase .

It had worked great for 6 weeks white counts dropped, spleen ( which was huge) started to shrink and low grade fever had gone away.so did night sweats,, but now it seems to have returned. My Doctor gave me a bone marrow test yesterday because she was really concerned  she thinks I'm still in chronic phase but is pretty sure the drug is not working..

My LDH has shot up and white cells are starting to climb.. Im really scared.. does anyone have any advice? should I just opt for a BMT my brother is a match..

[CallMeLucky]

I would try other drugs before going for BMT, my brother is also a match and I am pretty much same age as you (40 now, was 37 when diagnosed).  BMT should be your last option.  Even with sibling match you could still have severe complications from a BMT.