We met with Dr. P yesterday, the results were in from the BMA last week. Unfortunately, it's still not the numbers we're looking for, my Cytogenetic moved a whopping 1, from 20/20 to 19/20...The other (FISH/PCR) stayed roughly the same. We're mostly focused on the Cytogenetics since that is the one we first have to get down (goal is 0/20).
Now the words of Dr.D are still ringing in our minds, "don't expect too much from the first 3 months on Sprycel", so we're not quite flipping out yet. We had hoped to see something, since my counts had all been pushed lower on Sprycel. Dr. P is already consulting with Dr. D on what options we may have, since we can up my dosage, look at Tasignia, or possibly a trial drug. I'm even considering the option of going to 800 mg Gleevec (not sure they will give me that option). What is compelling about Gleevec to me is that there is a test to measure what your concentration of Gleevec is in your blood, where as there is no test like that for Sprycel. I keep wondering how much of the drug is getting to where it needs to go, and would a dosage increase help. Given that my blood counts are soo steady, the drug is doing something good, it's just not getting us the last 10% of the way there....
We did start the process of getting me HLA typed and also going to be getting my sisters typed. This is still plan B or C, but it's prudent to at least know. I do have 115 now on the Leukemia site that are a 6/6 match for me (up from 107 in March), so there is a very good chance that we can find a good unrelated donor if needed.
I purposely try not to put too much emotion into blogging, but I can't hide that I'm definately disappointed. I think getting HLA typed yesterday and have to even have the conversation with Dr. P makes you face the reality that I may have to follow Tyler's route one day.
The good news is that I'm still just chronic, in that my marrow is being kept in control by the meds, I'm not failing with increasing white counts. It is just this is going to hang over my head, until we get the numbers down. I'm now just waiting to hear back from Dr. P after he has consulted with Dr. D on what to do next. It appears I just have a very stubborn form of CML that the meds have a tough time penetrating. Since my CBC numbers are soo steady, it's surprising us since the meds are clearly having an impact, just not the fully desired effect.