Postby bluewillow » Thu Jun 21, 2012 10:20 pm
I completed 12 rounds of folfox in mid April. I had a lot of issues with neuropathy, but none so severe as the excruciating pain in my bones, from my hips all the way down my legs....(not just joints) that would just come out of nowhere. Pain meds weren't touching it...unless I eventually took enough to knock me out. 2 months out, I still have it, though not as frequently. What has been most effective for me is ice packs and elevating my legs....and good mattress support. It's a nuisance and I was sometimes having to change ice packs frequently and use them in several places at once, but they did help. For me, these "attacks" usually hit at night or when I am relaxed. I still get weird sensations of other kinds out of nowhere, too. For example, a few nights ago, for no apparent reason, my lower lip, inside and out, went numb...as if I'd had a shot of novacaine. Freaks me out when these things happen because I never know if they're related to the chemo, the cancer or something else, or if they're going to go away and when. Fortunately, that went away after about 24 hours.
One thing I discovered near the end of my treatments was a supplement called "Nerve Support Formula" designed specifically for neuropathy. It is a fat soluble B-complex + that has had a lot of positive reviews. The company is very supportive as well. It was too close to the tail end for me to be a good judge of its effectiveness, but I would definitely use it again if I found myself facing chemo again. You can purchase it online direct from the company....which I believe is called the Wellness Support Network."