This is my week off Sutent. Usually, that means a week of getting to feel slightly less lousy, clearer-minded, better energy. Instead, this week I’m again having the annoying pain flare-up. Poor rest, mind definitely less clear, body really really really hurting. So if I’ve bailed on something we were supposed to do, or only ‘showed up’ halfway, it’s not because I didn’t want to. Spirit willing, flesh weak and all that.
I really need to stop anticipating weeks off-drug as weeks when I can feel well and TCOB. July, August, and even the start of November also featured the pain/nausea flares during Sutent breaks; some lasting just a couple of days, some persisting for three weeks. My preconceptions in the face of conflicting evidence just make the pain periods more annoying. Most annoying is the notion of possibly having to adjust to this as a new normal.
However, these painful/nauseated days and weeks do make it easier to wrap my head around the idea that possibly Sutent is starting to fail. My oncologist last week was clear on that. I’ve asked for a CT scan, both to confirm that the pain/benefit of Sutent balance is no longer tipping in favour of remaining on it; and to set a baseline before possibly starting a new drug.
The potential new drug is Nivomulab. Instead of acting as a kinase inhibitor (as Sutent does) blocking cancer cell growth directly, it blocks molecular bonding of a cell-death stimulator on T-cells; thus allowing the T-cells to fight the cancer cells.
Typically, after Sutent fails for patients, the second line of treatment has been a different cancer-cell growth inhibitor like Afinitor. A recent international study has shown that Nivolumab may be more effective for kidney cancer patients than Afinitor, with fewer side effects. One (huge) issue is that, since Nivolumab is not yet approved by Health Canada for kidney cancer treatment, it is not available through any government-sponsored plan, and thus patients have to pay the full cost of treatment ($150,000 per year). My oncologist applied to Bristol-Squibbs Myer, the pharmaceutical company that developed the drug, for exceptional access; which has been approved.
I won’t really know until my next CT and next oncology visit whether this is really a new direction; meanwhile, the hope that it might be, and might provide some relief from these pain flares, is helping me stay reasonably positive and cheerful in the throes of the current flare. That, plus green tea, and injections from my nurses and wonderful husband.