Been a very rough week

coloCan said:

I;m doing FOLFOX
and the oxy is killing me to the extent that chemo on hold so I can regain strength and weight lost after two weeks in bed....Oxy will probably be removed in further doses....Hope you're feeling better, Kathryn...steve

Hey Steve
Keep hanging in there. I had my 5-FU push removed right away, and that helped a lot. I'm still taking the full oxy, but continue to tweak how it is given so I can tolerate it. Have they pushed your infusion time out slower? That made a big difference for me. And I have to get Neupogen shots every cycle with oxy because it gets my counts down. The cycle with just 5-FU I didn't have to get the shots.

I hope you get your strength back soon. I know when I had a an extra one week break over New Year's it made a big difference for me. A break will do you good.

robinvan said:

Welcome back...
Thanks for posting your Caringbridge Site. What a horrible ordeal chemo is for you. Is it almost done? Please?

Peace and blessings... Rob; in Vancouver

Rob - I'm on #7
I just finished #7. I had 5 tx of FOLFOX, and got an extra week off over New Year's. I came back and had one cycle with just 5-FU while the research was done on the desensitization for oxy after I had a bad reaction to it. (I'd had two earlier reactions, but they weren't as severe, and slowing down infusion seemed to help.) I'd already had my infusions slowed down to 4+ hours, and was already being given Decadron & Benadryl pre and post (along with calcium and magnesium).

The scary thing is I do not think this last allergic reaction was to the oxy. I got through that whole thing quite well this time. Oxy day wasn't bad. 5-FU day 2 was awful. I didn't have the reaction till the night before getting my 5-FU disconnected.

The nurses and my family, and I, think it was an allergic reaction to the 5-FU. My oncologist said he doesn't think it was an allergic reaction to the oxy. He thinks we got through the oxy ok too. But what bothers me is him saying he thinks I'm just fighting mucositis. NO WAY! Sure, I've got mucositis - MOST people on 5-FU get it. But I really don't believe my tongue can go from being so swollen and sore that I can't hardly swallow, and have trouble talking, to only being a tiny bit sore, and almost normal sized, after steroids, if it is mucositis. That is an allergic reaction - not mucositis.

I've had enough allergic reactions before to know what they are like - I am allergic to mushrooms, Compazine, penicillin, sulfas, cephalosporins, and erythromycins. The emergency room staff said it was an allergic reaction. It was gotten under control with Solumedrol (Benadryl helped a little, but not much).

My family is on my case now - no one wants me getting more chemo unless I am at the hospital for the full cycle. This last one was just the full day of oxy there, and then home with the infusor of 5-FU. My oldest daughter moves to Australia tomorrow morning. She has been with me most of the time so far through this. But now I will be home alone with my infusor if I do go home with it. My mother is on my case. My husband is on my case. I'm generally stubborn and think I'm tough, but this time I'm scared, and I'm not fighting my family. I think they are right. No more chemo unless it is done under supervision the full time.

My onc really wants me to get through at least 8 with oxy. I've had 6 with oxy now. I do have neuropathy issues, and that has extended to my feet this cycle (not really been an issue till this time). My face, jaw, neck, chest, issues with the oxy are not near as severe. Slowing down the infusion helped a lot. And now the desensitization really helped. Right now the biggest thing is electric shocks - fingers and feet. I can't touch anything cold or wet. I have to keep my face, neck, chest bundled - even a warm breeze hurts. But these are not big problems - almost everyone goes through that. My oxy issues are MUCH better.

What scares me is the 5-FU. And I don't know that switching to Xeloda would be a good plan. If it comes back - yes. But for now I want to try to stick to one thing and get it done. I'm just not so sure if I'm going to stop after tx #9, at which point I'll have 8FOLFOX and 1 5-FU done? OR keep pushing on to the suggested #12, with or without oxy? The issues with things seen in my liver and abdominal nodes earlier, and my rising CEA after surgery (which came down with chemo) muddy the waters - making decisions tougher...