Screw that med. [View all]

I was going to say "forget that med" but "screw that med" was more what I was thinking. Actually what I was really thinking was "fuck that med" but I can't say that here.

I have guinea-pigged myself out for about 6 weeks on this newly-released (6 mos) FDA fast-tracked drug, Stivarga (I think it's regorafenib - who comes up with these names) that has made me the most miserable I've been in a long time. It's a oral chemo, but don't be deceived - I'd rather be back on the intravenous stuff. Within 4 to 5 days of starting it originally, I couldn't walk (serious blisters), talk (mouth sores, dry mouth, and vocal damage), quack or function. Blood pressure through the roof. Nausea and loss of appetite - I didn't eat for two full weeks. Because it's oral, it's the gift that keeps on giving, 'cause you take it every day.

So we stopped it, took about 10 days off, and restarted it at a half-dose. It took longer to ramp up, but by two weeks this time I couldn't walk again, talk, quack; I was eating but just every other day (and about a half sandwich at that), but still an improvement on the first time. However I was quickly miserable again.

So we've stopped it altogether. We'll do PET scans in a week or so and establish a baseline, and work from there. In theory we could go on a lower dose (or the same dose for not as long) but then we don't even know if it's going to have any therapeutic value at all (not even sure it did on this last round).

Med-free for at least a month - thank goodness. I couldn't take any more.