12 replies to this topic

[Wilsa22]

Hello,

 

I am a 35 year old female dx with CML 13 years ago. I am resistant to tasigna and sprycel and am currently on hydroxurea and waiting on mutation results to start a new drug and wondering if anyone out there is on Ponatinib that I could talk to about their experience with the drug. The side effects and health risks I've read sound very scary and I am concerned about taking it. I would love if anyone out there has taken it and can share their thoughts?

 

Thank you!

[Trey]

Welcome.  There are probably about ten folks here on Ponatinib (Iclusig).  Some will respond to you, I'm sure.  In the meantime you can also search on the terms Ponatinib and Iclusig for some information.

 

Also, some info would be helpful, such as whether you were intolerant (side effects) or resistant (didn't work well enough or stopped working).  Did your Onc consider Bosutinib (Bosulif) rather than Ponatinib?  And why Hydroxyurea was chosen to use now.

 

Hope all goes well.

[Frogiegirl]

13 years ago? And resistant to tasigna? Forgive me for asking. ..but can you give some info on your cml history like were you a fast responder and reach pcru pretty quick? How long have you been on tasigna? You just perked my intrest because we are similar in age but I was diagnosed about 2 years ago:( I'm also on tasigna

[tinman1939]

Greetings, Wilsa.

 

I have been on Iclusig - or Ponatinib - for 18 months now (as of today, actually). I started at 30 mg/day and have kept with that dosage. Only side effects are the ones many of us - on any TKI - complain about: mostly tiredness and occasional achiness.

My results have been favorable (see below). I hope to be under 1% at the time of my next PCR test (November 16). We shall see.

 

Feel free to message me with any questions you may have.

 

Best wishes.

 

Wayne

P.S. I was originally diagnosed in November 2006, so I will be "celebrating" my nine-year cancerversary next month : )

 

(Started Iclusig, or Ponatinib, on April 7, 2014)

Wayne's Progress                         BCR/ABL (IS Scale)

April 2, 2014                                      56.6 %

July 3, 2014                                       16.3 %

Oct. 3, 2014                                       54.9 % - an aberration - thus a quick re-test below

Oct. 17, 2014                                     10.7 %

Nov. 24, 2014                                     12.95 %

Feb. 17, 2015                                     10.85%

April 30, 2015                                       8.37%

Aug. 11, 2015                                       1.46%

[Wilsa22]

Hi there! So sorry for not responding back, I've been sick the past couple of weeks, been doing much better. I am still on the Hydroxurea waiting for mutation test results to see if qualify for the Ponatinib. Each mutation test takes two weeks and the first two times they said it was a bad sample/inconclusive. So I'm waiting for the third test to come back!

 

Tinman - I'm very excited to find someone that's on it for 18 months and no issues. Do you have the T315I mutation? I was told the success rate of it working is 80% if you have the mutation and 50% if you don't have the mutation but are resistant to other TKIs. What dosage are you taking a day?

 

Frogiegirl - I was on Gleevec first, responded well and reached PCR quickly but had liver toxicity issues so I had to start and stop the medication a lot, so I switched to Tasigna as soon as it came out, and had no side effects or issues with it for 5+ years. I've been in remission with CML for so long, I stopped stressing and thinking much about it and would just take my medicine and go to check ups every 4-6 months or so. At some point over the past few months, I developed a mutation. Neither Tasigna or Sprycel will work. My wbc count will go up 30K a day while I'm on the medication. I've never really had to experience the bad side of CML until now, and it's awful. Brutal bone pain that not even hospital pain meds will help. I caught pneumonia and was in the ICU. It really sucks. The only TKI medication that will work on the mutation is Ponatinib but I've been waiting over a month for my mutation results. My insurance will not cover it without the mutation test results so all they can give me is hydroxurea to lower my wbc count until then. Hopefully, I get the test results soon

 

Thanks for your responses. I feel so much better finding someone that the Ponatinib has worked for!

[rcase13]

I hate how insurance dictates our health choices. I remember my stay in the hospital on hydroxyurea and hope yours is short. I wonder if you would qualify for the ABL001 trials. I think I read it was designed for people that lost response to Tasigna.

Hang in there and keep your spirits up.

[Frogiegirl]

Wilsa22 Your situation brings me back to reality. I think I sometimes forget just how serious CML is after you begin to get such a good response. its almost like when it starts to go south you get smacked in the face all over again...like at diagnosis. Can I ask if you have had any little ones since diagnosis....that's the choice I am currently being faced with. I had two boys prior to diagnosis but am anxious to have one more. I've always been one to push the envelope or take a chance....but I'm hesitant on this one....a little. I'm so glad there are now more options since gleevic. I'm hoping they keep coming out with more. I'm still confused on the mutation thing, do those sometimes eventually go away on their own? have you ever gone a long period of time without a TKI? or just small breaks? You are amazing! just thought you should know  

[tinman1939]

Wilsa22 -

I take 30 mg/day of Ponatinib (usually near bed time). I do not have any mutations. I was, however, intolerant of other TKIs, mostly for an issue I now have under control. So, if need be, I could go back to one of them (i.e., Tasigna), but am doing well enough on Ponatinib that my oncologist at Baylor doesn't want to rock the boat. Full steam ahead, he says (maybe he should have been a ship captain).And, no problem with insurance coverage - even in the absence of mutations. Best wishes,

TinMan1939 (what a year for movies)

[Gail's]

Frogiegirl, I think you should just go for your 3rd baby since you have support from your oncologist to do so. Choose life, then don't look back at the "what ifs." Just enjoy your new baby and know there are treatments to enable you to see him/her grow up!

[Wilsa22]

I got my mutation test results and it was negative, but also did a sensitivity test and I was resistant to gleevec, tasigna, sprycel, all of them except Ponatinib showed some activity. Even tested my blood with the new ABL001 drug and it didn't work (It only works on mutation). Dr Druker said the CML wants to survive so if you cut off one pathway, sometimes it finds another pathway. If I had the mutation I wold have more drug options. I should start Ponatinib next week. I was told 50% chance it might work. Otherwise, all I have left is a transplant.

I was super positive sprycel would work, and positive tasigna would work. I'd like to be positive again with Ponatinib but I think I've run out of positivity, and I don't want to be let down if it doesn't. But then my family says my negativity can impact its ability to work...so maybe I should try to be positive. I'm getting a lot of anxiety over it.

Frogiegirl - thanks for your supportt! I don't have little ones, but if I get through this and don't need a transplant, I definitely want to try. From everything I've heard, it shouldn't be a problem for you having a third as long as you have a good remission. And I wouldn't worry what happened to me will happen to you, I think I am an anomaly. Most do very well on Tasigna.

[Frogiegirl]

Wilsa22 your family is right. ...although staying positive can prove to be challenging sometimes. you know that old saying "easier said then done". I allow myself to have that breakdown(trust me it's notpretty..tears,snot,unidentifiable words and everything!)Then I put on my big girl pants (which are getting a little small) and kiss my boys;) you ARE amazing! don't let anyone especially yourself tell you otherwise! please keep us updated. HUGS!

[holygeez8]

Wilsa,

I have been on ponatinib since Dec 2012. I was in the clinical trial for it. I couldn't take enough Sprycel for it to work. I achieved PCRU in less than 2 months on Ponatinib. I went up to .5 in the next test and have gradually worked my way down to PCRU again, 3 months ago. I took another test today, so we will see what is happening next week. I have no known mutations.

[kat73]

Wilsa22, how are you doing?  How do you feel after a few weeks on Ponatanib?  Have they retested yet?  Pulling for you!