On 2/2/2007
Rosythorn wrote:
Hi Brian - I completely agree, someone should try to find out how many weren't told about PN and think about a class action suit. I mean, I'm sure no one would refuse a possible cancer cure because they MIGHT get PN too, but my feeling is that since the doctors and drug companies all know PN is a possibility, why aren't they addressing that along with cancer? PN may not be life-threatening but it certainly is no joke, esp. if you've just gone through (or are still going through) cancer therapy. And from what I've read, there's practically no research going on re PN.
I'm not sure how you could go about finding other people with the same issue; probably via chat boards like this one, or www.craigslist.com, where you can post uncensored "rants & raves" which others can read and respond to. I'm also sure anyone suffering from PN alone would rally to the cause, if only in the interests of freedom of information. Like I said, I've looked at hundreds of PN-related websites and never seen anything about it being caused by chemo. Stress (that's mine), diabetes, alcohol, toxic stuff, all sorts of things, but not chemo. It's like the right hand doesn't know what the left hand is doing. If I can help, let me know - have computer access, will type!
Rosy
I won't bore you by repeating my story; it's the same as most everybody's. I had Stage IIIB colon cancer on ascending colon that had penetrated the colon wall but all nodes collected were clear. Removed the tumor and advised to do FOLFOX6 in case 'loose cells' were left behind. Was advised early on of cold-sensitiivty caused by Oxilaplatin. Complained of finger and feet pain, soreness, and numbness after 6 of 12 treatments. Was advised that it would go away after treatment was complete; it hasn't. Condition has grown worse so far after 2 months. Found Oxilaplatin manufacturer's website; PN is a well-known side effect there. Many studies done to assess PN and treatments for it; no successful conclusions so far. Recommendations to reduce PN when it occurs (reduce dosage) were not followed by my oncologist! His attitude it that FOLFOX6 is so much better than alternatives that it justifies the PN risks. I'm not sure that the Oxilaplatin manufacturer's study and comparative data to 5-FU/Leu./Irantocan (sp?) treatment success really says that at all. My onc. told me that the combination of surgery and FOLFOX6 would give me 90+% probability of remaining cancer-free after 5 years; the manufacturer's data did not say that at all.
If I had known then what I think I know now, I'm not sure I would have stayed with FOLFOX6 for the entire program and certainly not as it was administered. I started at 90mg/m2; it was reduced to 85mg/m2 after I complained of PN. The manufacturer recommended to start at 100mg/m2 and drop to as low as 65mg/m2 if PN develops. If PN goes beyond Stage 3 (impacts normal daily life functions) consider elimination of Oxilaplatin. In one study they ran, 30% of the participants dropped-out before the study was completed due primarily to PN issues.
My Granddaddy used to say, "If your foresight was as good as your hindsight, you would be better-off by a damn-sight!"
Ed