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!