Soon after this disaster, I headed out west to meet with Dr. Druker for my annual visit. Earlier that same week, he was on the Dr. Oz show. Here is the clip below.
Dr. Druker said that he was receiving calls from all over the world because the show seemed to indicate that Gleevec was a miracle pill for many types of cancer.
Anyway, my visit went smoothly and calmly. I had blood drawn and we talked about longer term plans. Dr Druker wanted me to have a Gleevec Level test conducted because he suspected that I might be on too high a dose of the medication and could likely come down from the 800 mg. In order to do this, I needed another kit that was shipped to me and was sent off to the CML Alliance. Unfortunately, due to a dispute with the FDA, the information from the CML Alliance had to be removed from the web.
After our visit to Portland, we jumped on a plane and headed to the Bay Area to meet up with our friends Angela and Russ. We visited Napa Valley and San Francisco and had a wonderful time.
When I returned home, I had the blood work done. I received a call from Carolyn at OHSU letting me know that my PCR level was still extremely low and only barely detectable based on the ultra sensitive tests that they use at Molecular MD. My Gleevec level also came back as quite high indicating that I needed to come down off the 800 mg to 600 mg.
Interestingly, this posed some logistical issues. First, I would need a new prescription which is usually not a big deal under normal circumstances. Due to the high cost of this medication, there is an extensive pre-certification process that has to occur. Also, the pill comes in 400 mg tablets or 100 mg tablets. That would mean I would break the 400 into 2 or get a bunch of 100 mg tablets. The problem with breaking the 400 mg into 2 is that it is released quicker in your body and may produce some side effects.
I took the plunge last night and took my first 600 mg dose of Gleevec. I will have another PCR test in August to monitor my progress and make sure my numbers don't change.
Dr. Druker also talked about some potentially encouraging research out of Europe. Some people with CML and taking Gleevec have been able to come off the medication and have no return of symptoms. Others have tried the same thing and symptoms did return, but disappeared again once Gleevec was restarted. This might suggest that Gleevec could be curative in nature, but there is not yet enough research to determine this.
The other good news is that my office was fixed and we moved back in. This allows me to breathe a small sign of relief.
