We were so happy walking in to our house after three weeks in Texas, it was a joyous relief. Mom had stayed there to take care of the cats, and the house looked clean and felt calm, just how we left it. The cats were happy and healthy. Our home truly is a sweet home. OK, on to the tasks at hand...and there have always been tasks at hand since this ordeal started.
Our doctor from the Burzynski clinic had given us a list of doctors in California that would be willing to work with them on my Herceptin infusions I needed once a week. I’m guessing now but I would imagine that seeing as how the FDA only approves this drug for breast cancer (just recently approved for gastric cancer in Europe) that many doctors won’t even consider administering Herceptin for liver cancer. The only one remotely close to us was in Fresno, three hours away by car or train, but the real kicker was the fee. Herceptin itself costs about over two-grand per infusion dose, but for what this guy wanted on top of that I could have flown back to the Burzynski clinic, got the infusion, and flown home with enough left for a burger and fries!
Everyone flew in to action and the upshot was a reasonable rate with a doctor in the Bay Area. As I haven’t had my first infusion since getting back almost a month ago (not a good thing) I don’t have much more to add. We’ll see how the first one goes. I’m scared and wary, but as of late, those feelings have become a huge part of this thing.
Before we had left the clinic, Dr. Anderson had taken me off Tykerb because my liver enzymes had risen and the side effects were big time funkified, and she said that when I started back up it would be with half the dosage and gradually work my way back up. I emailed Dr. Anderson for the fourth time since getting back and had always had pretty quick replies. This time after a few days I got an email (not a phone call) from the clinic that Dr. Anderson was no longer at the clinic, and Dr. Kubove would be my new doctor. Then I got a call from Meighan, a nurse that works with Dr. Kubove, saying that she would be my liaison, as it were, for Dr. Kubove and she’d be checking in weekly, but that if I had any problems to give her a call. This is part of the $4,500 a month the Burzynski clinic charges for case management; there are other tasks involved like checking my weekly blood-work, which we have to pay for at Lab Corp, and I’m sure there are other things as well...
I had also been on a drug, Zolinza, which sounded like a Flamenco dancer to me, that also had some rather unique side effects. Except Dr. Anderson also stopped that the next day so I’m not quite sure which drugs they had attributed the side effects. Although Zolinza hasn’t been mentioned again I have been on one (250mg) Tykerb a day for 5 days and am supposed to go up to two a day in three days. Scared and wary.
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