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….