This afternoon I called up Deb, Dr Specht’s nurse, so that I could tell her to pass on that I was NOT going to be resuming Tykerb/Lapatinib/Shits Unlimited after my two-day doctor-prescribed reprieve. My taste of poop-free liberty has been so sweet, so restful, and was so immediate, that I have no doubt that the drug was not the right one for me.
This morning I got a call back (!) from my case manager at GEHA, my insurance company, explaining why they were loath to pay for both Navelbine and Lapatinib. She said that, according to GEHA standards, if a combination of medicines has been approved by the FDA then they pay for it; if a particular combination has not been approved by the FDA (which is the case with Herceptin, Lapatinib, and Navelbine all together; Herceptin with either of the others is fine), then GEHA considers any use of the combination to be a “study”, and they don’t pay for studies. The very nice lady on the phone said that this was because they didn’t want to accidently pay for toxic combinations for people. She also told me that my doctors had 6 months and 3 chances to appeal . . . but I had to wonder . . . at least for me, maybe the combination of Herceptin, Navelbine and Lapatinib WAS toxic. It certainly felt that way.
I know that denying—me personally, not my insurance company—a drug that could potentially reduce my cancer load (bone-based at the moment) is theoretically risky. But unlike Spring of 2007 when I was just done, not willing to play cancer games anymore, and actively gave up all treatment, I am not done. I know that, for the time being, I need to be treating this cancer. I also know that there’s no point in a cancer treatment if it’s going to kill me before the cancer can.
Anyway, I do have a couple things coming down the pike (turnpike, I assume?), including Healer and Hemp, and without Lapatinib gumming up the works (the insurance works, obviously, not my works), Navelbine is an easy in. And while I’ve been writing this, Deb called back and said that of course I could quit Lapatinib—it was entirely my choice—and she’d see to it that everyone knew and Dr Specht and I will talk about the future at my Thursday visit.
My throat is back to normal today, and my hands feel less dry, my face looks better, and although my guts have continued quite loquacious, I’ve been able to pass gas and only gas (I think . . .).
I am so relieved.