Sunday, November 29, 2015

Limbo


For several weeks I have been in limbo, having discontinued of necessity taking Sutent, the Pfizer targeted therapy for my renal cancer, and waiting for the uniquely American rigmarole of Big Pharma to resolve with the hope of switching to a different targeted therapy, probably Afinitor, a Novartis product. Cancer drugs are extremely expensive and so support to make them affordable is essential even when one has prescription insurance.

The combination of Sutent and a history of radiation that was used some twenty-two years ago to treat squamous cell carcinoma produced some jawbone necrosis. A month-long pause in the targeted therapy treatment proved insufficient and so Sutent needed to be discontinued altogether. Targeted therapies target different aspects of cancerous tumors. Afinitor seems less likely to exacerbate the jaw issues. But all treatments are to some extent “experimental,” whether it’s aspirin or a cancer drug. Individuals react in different ways to various chemicals, and the reactions are only predictable to a certain degree.

The Sutent side effect led to a number of dental problems, multiple consultations with an oral surgeon, and two rounds of antibiotics to resolve (not completely but substantially) tissue swelling that severely restricted jaw movement and reduced the extent to which I could open my mouth. Eating was compromised, meaning that for several weeks I could manage only liquids or semi-liquids (yogurt, for example).

During the period after I discontinued taking Sutent, the back/side pain that had been the tipoff that my renal cancer of seventeen years ago had returned also came back. Early on—several months ago—I had been prescribed hydrocodone-acetaminophen (Norco) for the pain and took it on an as-needed basis. While I was taking Sutent the pain went away completely. Unfortunately I found that I need a painkiller regularly during this limbo period. A couple of weeks ago Norco ceased to provide relief. It simply stopped working. Consequently I was prescribed oxycodone-acetaminophen (Percocet), also on an as-needed basis. But I’ve had to use it regularly and recently even shortened the six-hour interval to five in order to manage the pain effectively.

Pain can be severely limiting, not only physically but mentally. Pain is a distraction. It draws attention away from other things and to itself, making it hard to concentrate on reading, writing, or doing routine activities. At its best Norco and now Percocet simply reduces the pain to a manageable level; the drug doesn’t provide complete pain-free relief. But at that manageable level, other things—distractions ranging from watching television or a movie or talking to friends to meditating or doing modified yoga—complete the relief process. In other words, keeping busy serves as a supplemental, non-chemical painkiller.


During this period of limbo I am doing my utmost to keep busy in productive, fulfilling ways. The next phase of treatment has yet to begin and so this post must be a kind of cliffhanger. To be continued….