Screw that med.
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.
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We did stereotactic radiation on the lungs and immediately thereafter did the Stivarga; the radiation certainly worked; I doubt the Stivarga had time to work - we discontinued it at full strength barely a week into it, and when we tried again at half dose, barely made it to two weeks. I don't see how that got me cleared - more inclined to attribute it to the radiation.
We're just playing it by ear - we'll see if it stays tamped down - right now we're just checking every 90 days. I assume it will come back, just don't know when. It's stage IV for chrissakes, I'd likely be deluding myself if I thought it was gone forever, butchaneverknow, however my body's enjoying the recuperation while it can get it.
Glad to hear you're doing well. I don't have a problem with natural cures (though I don't do them myself), although I get concerned where someone forgoes traditional treatment in lieu of natural-only - I think that's asking for trouble. Just today someone recommended I get shark cartilage and something else, because a friend has been giving it to the friend's wife for 12 years and their stage III hasn't come back. Good if it works, but I won't bet the boat on it. Ask Steve Jobs how that worked out for him. 
That aside, I don't know that I have the cash for all these natural alternatives anyway - some are mucho expensive and insurance won't pick them up. However, for what insurance paid for my Stivarga ($12k/month) that could have been years of all kinds of natural stuff. Anyway....
