Friends, we need some advice. My husband was diagnosed with CML last July. He was initially treated with Sprycel, but was taken off due to less than optimal pcr results and also issues with anemia and low platelets. His pcr result was 12 at 6 months on Sprycel. He was switched to Bosulif. I posted a discussion previously about his issues with terrible GI side effects. About a month or so ago, he was taken off of Bosulif due to elevated liver enzymes. When he was told to stop taking his meds, his liver enzymes were 909 and 240-something (ALT and whatever the other one is- can never remember which is which). We found out later that his liver enzymes were elevated enough to stop taking his meds the month before, only no one notified us or maybe no one noticed?! How does that happen? We are not very happy about that. He was extremely sick right before he was told to stop taking Bosulif and we can only guess if maybe that was due to his liver being so taxed. He was off meds for three weeks until his liver enzymes recovered enough to start back on Bosulif at a lower dose (400 mg). For the last two weeks he's been back on the lower dose with very minimal side effects. We were really hopeful things had settled down and he could achieve that elusive pcr result we have been hoping for. He went for blood work this week and bad news. His liver enzymes are elevated again- the high one was 606, so they went up quick this time. So it's off Bosulif now and on to another option. I'm not exactly sure which one, Gleevec or Tasigna are the only ones left, right?
We are feeling really discouraged. Nothing has gone as we have hoped it would. The more I read about (and I'm trying not to consult Dr. Google too often) the more I am realizing that we may have started out treatment the wrong way. Why didn't we start on Gleevec? Also, he never had a bone marrow biopsy. He was diagnosed through a genetic test, I believe? He was tested for evidence of the Ph+ chromosome and his doctor diagnosed CML through that test. His white count at the time of diagnosis was 356k. We would really like to seek a second opinion, particularly from a doctor who has a lot experience in treating CML. We live in a smaller city and there are only a couple of options for cancer clinics. We would be willing to travel somewhere else to have someone look over all his information and tell us that we are on the right track. We live in between Charlotte and Atlanta. How do we go about setting up an appointment with someone? And with who? Do we ask his current doctor for a referral? Will insurance cover second opinions? Should we ask for a bone marrow biopsy even though he has been on two different tki's for the past year? He is really not excited about the possibility of a bmb.
Ah, I am up way too late worrying. And this is a totally random question- Has anyone gone to one of those Team Ph+ CML Game Day summits? There is one in Charlotte next weekend and we are not too far away. Kareem Abdul-Jabbar is a speaker- put on by Novartis pharmaceuticals. Just wondering if it would be worth our time to go.
Thanks so much for any advice. I really appreciate the support.