help!

jsabol said:

Dear Bud,
Sorry to hear about your current results. It's hard to know what it will mean for you without hearing from your onc. As a rookie in this cancer, I'm sorry that there is nothing that I know that can be of help, but I do know that I am sending many positive thoughts your way across the miles. Hang in there and know that we are all pulling for you. Keep us posted. Judy

KrisS said:

Hi again- I know what you mean about friends, I end up doing the same thing with mine.

As for chemo, I have had irinotecin, and had a rougher time with that but I was also getting radiation therapy at the same time, and that contributed to the problems. I have since been on oxaliplatin. Everyone responds differently, and -different oncologists have different protecols, but I get oxaliplatin infusions once every 2 wks, followed by Xeloda (capcitabine) an oral drug similar to 5FU twice daily for 5 days.

The drugs can cause nausea, although I rarely actually vomited. It took a few weeks to find the best antinausea drug for me, but now I rarely feel queasy. I have maintained my weight and hair. I feel tired, especially on day 3 and 4 post chemo, and ideally would like to nap, but I have put in an 8 hr day at work on those days at times.

Xeloda and 5FU can cause mouth sores. Fortunately I have never had these. I do get hand foot syndrome- hands/feet get very red and sore and I don't feel like walking much for about 2 days. For some odd reason this week I had hand inflammation so badly that it was painful to unsrew the lid of a jar, and did lay me up. Lasted only one day though. Otherwise, I've can hike, lift weights,(although not as fast or much as I used to). I've traveled, as well.

The big problem with oxaliplatin is development of acute and chronic peripheral neuropathy. The acute form makes your hands and face and mouth tingle and sting when they get cold. I wear oven mitts to get things out of my freezer, and drink warm things. Most people get this symptom. It gradually tapers off in severity over 5-7 days. On those days, I do my "hiking" indoors here in Wisconsin.

More permanent neuropathies with decreased sensation in hands and feet can be a bigger problem with long term treatment and, if it gets bad enough, can necessitate discontinuation of treatment. I have some moderate loss of sensation, but it has not caused me any difficulty. I am getting an infusion of calcium and magnesium before and after my oxaliplatin to try to reduce the problem since there are some preliminary reports to suggest that this helps. It adds 2 hrs to the otherwise 2.5 hr infusion, but I think it has been worth it.

I have had a port since 6/02 and love it. Most people receiving oxaliplatin go for one because the infusion of the drug through a regular catheter in the arm can be quite uncomfortable from what the nurses tell me. Blood draws can be done through it as well (although not not the injections for contrast CT). Proper cleaning of the skin over it, and careful bandaging are very important to avoid infections which can be real trouble. Oncology nurses deal with ports all the time and are careful; others may not be so experienced. If you are going to get one, make certain that someone skilled in placing them does it. Like anything else, there are little tricks to placing them that can make them work better. It is a quick procedure. I had mine put in under a local and went back to work a couple hours later.

Best wishes,

Kris