Hi, Cathy. . .
I understand your frustration! My numbers have jumped around a bit, but have been consistently close to or under MMR. I have blood work on Tuesday, and I'm hoping to see PCRu again since my last few draws have been getting close.
I went through quite a few oncologists, trying to find the right one. I probably jumped ship on one doc when I didn't need to. He knew his stuff and was easy to talk to, but somehow, every time I left his office, I would get home with more questions than I had when I got there. I decided that his communication style just didn't work for me. Looking back. . . I think he was just fine and knew what he was doing. Perhaps I should have stayed with him. Luckily, I've found someone I like even better. The difficulty is that if you leave your current onc, and DON'T find someone better, it will be uncomfortable to go back.
As Soundoff said, your numbers are probably fine. But if they were my numbers, I'd be frustrated too. Especially when you hear all of the people on here who have been PCRu forever. You do need to keep in mind that perhaps the most frequent postings come from people who are doing well. There are lots of folks out there who are struggling with mediocre numbers.
It sounds like you are doing the same thing that I am doing. . .trying to find the balance of lowest dose that maintains reasonable numbers, and doesn't create side-effect issues. I'm not sure that a different doctor would be able to offer you any other alternatives. CML is a numbers game. For most of us it's a matter of staying the course and maintaining our stress level in order to have a pretty normal life. Those who don't respond to TKIs are the ones really fighting the battle.
I think you should voice your concerns with your oncologist. It's difficult to be honest about one's negative feelings toward a person, but if you let him know that his lack of suggestions is frustrating and that not being at MMR creates anxiety for you, that might help your doctor/patient relationship. Maybe you could make an appointment to speak directly with the CML specialist, though that may be a waste of time and money. You really only need a specialist if the TKIs aren't working, and it looks like they are for you. That said, peace-of-mind is worth a lot, and a specialist might be able to give you that.
I think you should write down your feelings and concerns, let it sit for awhile, then read through it and rewrite it until it feels good, and then bring it to your next appointment and tell him what it says. Read if verbatim if you need to. If a different doc would give you more confidence, then try another doc. CML will be with you forever (or until they find a cure, which might be in our lifetime) so having a trusting relation with your oncologist is paramount.
Good luck,
Marnie
