Light at the end of the tunnel

Two weeks ago, the doctor decided that, because of the increasing side effects I've been experiencing, we would discuss the possibility of continuing treatment before each of the following three treatments.

Over the last two weeks, a significant amount of neuropathy has developed in my feet and hands. This is a side effect of the oxaliplatin, and one that may be permanent and would worsen with further treatment. That was a big development, but I've also been feeling worse and worse the last few treatments and the time that I was feeling better was shortening significantly. I was ready to stop completely, though we were still 3 treatments away from the standard of 12.

The doctor decide that it was no longer a good idea to give me the oxaliplatin, as even now it may take a while before the neuropathy improves, if it ever does. He also convinced me to take the 5-FU pump and Leucovorin for at least one more week. I've found that I am the most sick around the time pump is disconnected. I don't know if that is a coincidence or a sign that it is the main culprit of my severe nausea. At the moment, I don't feel horrible, but Friday mornings are usually when I feel the best during treatment.

I didn't like the idea of showing up each week, not knowing what we were going to do. Also, I don't think I can do three more treatments, if the nausea continues like this. The doctor agreed that if I feel the same way this time, I can know that we'll be done when I go to the office on December 1st. So far things are following the normal path of treatment for the last 3 or 4 times. Maybe, I will recover more quickly this time, or won't feel as bad. We'll see. Part of me knows it would be better to do 12 treatments, though there's no guarantee that will improve my chances by any significant degree. Another part of me is ready to be done for now, and find out what the new scans will show.

I'm hoping to visit my family in Maine over Thanksgiving, and meet my new niece Lillian. Whatever, happens with this and future treatments, it will be fun to see my family.

Thanks as always for your prayers and encouragement.

Treatment

I started treatment today. The doctor put me on a new anti-nausea medicine. We'll see how it goes. I'm pretty tired at the moment, and not feeling great. I'll try to post later this week to give an update.

Treatment started

I've started a new treatment today. I will have the 5-FU pump until Saturday afternoon. I'm feeling pretty sick at the moment, pretty much the same as last time, but maybe a little sooner.

Same ending

I felt a lot better yesterday, than I had felt during the last two treatments. However, today I started feeling worse and worse. I just arrived back from having the 5-FU pump removed and barely made it to the bathroom before being sick. I guess this is just going to be the new normal for my treatments and I'll just be happy that I don't have 14 more days of pills to take.

Back to Folfox

I went to the doctor today and he decided to put me back on Folfox, which I had tolerated so much better. While it's unclear whether it was the Xeloda, the increased dose of Oxaliplatin, or the combination that was making me sick, it seemed like it was time to go back to what had been working better in June. Also, they are able now to acquire the drug that had been on shortage (though they didn't have enough today, and can't be sure how long their supplier can get it for them.)

Chemo is tough regardless, but the chance that the bad days won't be as bad and that the cycle lasts for 2 days instead of 14 seems like a good thing. It was a rocky tart as the infusion started too fast for me and made me sick immediately. It took a few hours for my stomach to settle down to a more manageable level of nausea. I'm feeling okay right now, though it's all relative.

So now I have my old pump, which I had been carrying around for 3 months, for the next two days. I get it off on Saturday. Before the surgery I started feeling better on Monday and back to myself again on Tuesday (except for the one time I started coughing up blood-thank you Avastin :)). I'll try to update sometime this weekend about how I am doing. Thanks as always for your prayers and words of encouragement.

I also want to say thank you to everyone who has supported my sister, Janet, who is running the Chicago Marathon for Team Livestrong. Because of the amazing generosity of some many people, she has raised over $10,000 for cancer research! I'm amazed by her commitment and stamina and all of you who has given so sacrificially to me personally and to this cause. A silver lining in the new treatment protocol is that I will be off chemo for the race and hopefully feeling pretty good.

Good news all round!

It's been a pretty good day so far. First, I restarted the Xeloda pills yesterday morning, and except for some mild nausea, easily controllable with medication, I'm feeling really good. Apparently, it was either the increased dose of Oxaliplatin or the combination of both drugs that was making me so sick.

Even better, my sister, Liz, gave birth to Lillian Esther Smith early this morning. Lillian is a normal Kafkas baby checking in at 9 lbs., 8 oz and 21 inches (not quite up to my 12 lbs 1 oz, 23 1/2 inches, but big enough!) She's beautiful and I'm looking forward to being able to hold her this Christmas when I'm done with chemo and back in Maine.

Day Two

I talked to the doctor. He's still puzzled by my reaction. He thinks it might have been the larger dose of oxaliplatin that is making me sick. He wants me to wait until I feel better, then try the pills again and see how I react.

At the moment, I'm still feeling quite miserable.