I recently finished my 8th (and I hope last!) cycle of FOLFOX 6. Here are some comments: Yeah, I had the hand cramps. I’m a guitarist, and in the first few cycles this side effect meant a day or two when I couldn’t play. It worsened with the number of cycles, so that by the later cycles it lasted longer and got bad enough that just holding a plate could trigger it. Good news is that it went away fairly rapidly — 3-4 days of each cycle, tops, and was intermittent on those days. Not a huge deal. This is the Oxaliplatin — when it was dropped for cycle 8 I experienced no hand cramps. The progressive neuropathy is a real issue, though, and should be watched closely. My oncologist pulled Oxi in cycle 8 because I’d had a great response by then and I’d made vague comments about “my toes feeling a little numb.” Turned out he was right — the numbness built for about a month after the Oxaliplatin was removed, though it seems to be slowly reversing now (5-6 weeks out). Others have experienced much more serious versions of this than I did. You can look it up on many threads here by searching “neuropathy,” though you may have to adjust for the FOLFOX/Oxi context specifically.
The jaw thing sounds like a version of “first bite” syndrome. My enjoyable take on that was a little more interesting than yours — felt like someone was jamming railroad spikes into my jaw for a bit when I took that “first bite.” Goes away after a few seconds, though, so no big deal. Interestingly, oncologists really don’t seem to recognize this one — I even got to the point of joking with mine that I knew they were going to say they never heard of it; I think they all get together and pull our collective leg on this one: “What? that’s odd, never heard of that one!” When many, many patients on Oxaliplatin report it. But really, it’s just an annoyance and they have more important things to worry about
I had lots of other side effects (some fairly serious), so you seem to be doing really well so far. Overall, Days 1-2 were ok (love the steroid!), days 3-4 were the worst, pretty fatigued, vaguely sick, shortness of breath, etc. just need to keep your head down and plow ahead. Day 5-6 got better, but it was pretty marginal. Then got real improvement and was nearly normal in week two (off week). The good times got shorter as the cycles mounted, but YMMV. There’s a great, super deatailed blog post about the FOLFOX chemo experience posted by a colon cancer patient that really helped me. I’ll try to find it and link it for you in a separate post.
Bottom line/my two cents: This is a bit tough (and there’s a range of toughness), and you have to keep really good communication with your oncologists/chemo nurses, but you will get through it, and there will even be lots of good times during treatment. It worked fabulously for me, and was worth the “ugh factor.” Good luck!