Jeff G asked about experiences with Oxaliplatin/Xeloda (capacitabine). I was on that combination through a clinical trial at the Univ. Wis. Comprehensive Cancer Center for 1 years, 5 months (May 2004 - Nov 2005), then for two months (April - May 2006).
As most people have mentioned the most common side effect is the cold induced neurophathy -- tingling extremities and very sensitive to cold for (in my case) up to 5 to 7 days following treatment. Breathing cold air, trying to swallow (hot or cold) is a little bit of a challenge, but I became used to these things, and was able to deal with them. For instance I used gloves when typing on the computer until my fingers became less sensitive after each treatment. It seemed to be standard practice to give steriods at time of treatment to prevent nausea, but then for the next couple days I was climbing the walls and back down the other side. When the steroids wore off, I slept almost continuously for a day or so. My appetite was not ggod, partially because the neurophathy gave me the feeling of a lump in my throat, which made it hard to swallow. (Of course there was no throat lump, just as car door handles were not made of ice!) I was on the program long enough that the drug company gave me mittens, a blanket, a scarf and a carrying bag with the name Oxaliplatin on it. I had a number of other side effects such as my finger nails getting quite soft. In fact they got so soft I told the doctor I couldn't even pick my nose -- now that is soft! The one constant side effect was that my platelets would get lower than the thresh-hold for the study, which was 75. Although the study people weren't happy about that, I thought it was great because treatments were postponed until the platelets were over 75. The final trial treatment was 7 weeks apart (and the treatment protocol was supposed to be every couple weeks!). I was then taken off the trial for that reason, but also because the spots had become so small and fragmented they could not even be measured. I was off the study from early November until February when the spots started appearing again. I was not able to get back on the trial, so I received the treatment "off study" for two months, but unfortunately it was no longer effective.
I'll briefly mention one other thing. At one point (before I had an infusa port), apparently the injection needle went through the vein and infused a half hour (quarter bag) of oxaliplatin into my arm instead of in the vein. If anyone is interested in that, unfortunate mistake, I can tell more about it.
Everyone reacts differently to chemos, but these are some of the experiences I had with over a year and a half of treatment with Oxaliplatin/Xelodia. I was pleased with the results for most of the time, and was able to recover from the most unpleasant side effects after about a week following each treatment. The chemo eventually didn't work-- but that was not surprising, and we'll just have to find a new one which will work.
Good luck for those of you on this combination. Keep positive and keep busy so you don't dwell on the treatments.
Jerry Daniels
Platteville, WI