Off to a slow start

Dose 2 of round 2 Erbitux treatment was supposed to be administered on Tuesday, but was cancelled. Before starting any round of treatment, I talk with the nurses about the side effects I am experiencing. I commented that my diarrhea was still pretty bad. When asked to describe pretty bad, I said 12-15 bathroom trips per day, including getting up in the middle of the night, something that hadn’t really been an issue before. Some head scratching, reviewing of drug manuals and discussions with Dr. Lange led to the decision to hold off for a week and see if things get better on their own. We also decided to add in Kytril, which is an anti-nausea medication that apparently constipates everyone who takes it. Well, four doses later and I can officially say “Not me!” It hasn’t seemed to help at all. I’m not getting up at night lately, but that’s probably because I’m taking benadryl for some itchiness and thus being knocked out at night.

I know that there are a couple of things that could possibly happen on Tuesday when I go back to try for round 2 again.

1. Just push forward and deal with the diarrhea as I have been. Keep a close eye on weight loss (down 2 pounds from the previous week) and try to supplement diet with nutritional drinks, etc.
2. Lower the dosage, but no data exists on the effectiveness of the drug at a lower dose than the one I am on.
3. Switch to a treatment schedule of 1 week on, 1 week off. Again, no published data on the effectiveness of the drug on this schedule.
4. Stop the treatment completely.

I’m not sure which one I am rooting for. Today I wouldn’t mind going off Erbitux completely. I awoke this morning to find both eyes swollen shut, and the pimples/acne on both eyelids of both eyes. Previously it had only invaded one eye, but now it’s on both. Slightly uncomfortable. However, I believe the drug is working and would prefer to suffer through at least a year of treatment to see if it gets me more than 18 months until my next surgery. So I guess I’m leaning towards option 1. I’ve dealt with the diarrhea for the past 5 years, what’s another year?? OK, it’s a lot, and I’ll probably complain about it to any/everyone. But is it really a lot to ask to be able to go out to a restaurant and pick something off the menu for dinner that actually appeals to me and isn’t the “safe” choice, the food that will cause me the least amount of discomfort? I know there are thousands of people out there who face similar issues because of Crohn’s disease or IBS, but this is my pity party. I really just want a nice juicy steak, some corn on the cob (slathered in butter) and a huge piece of cheesecake.

The absence of treatment this week has meant that I have some extra energy which is nice. I didn’t have to drive into work every day. I was able to go out to a movie on a weeknight. I’m hoping the energy stays with me through the weekend. It might be nice to be able to do something with my husband. Especially since both our trips got cancelled and so we are both going to be home.

Hope everyone has a nice weekend!!