Chemo update

I’m one week into my third chemo round of two weeks on, one week off. I’m actually feeling pretty good. Unfortunately, I’m showing signs of some fairly concerning side effects. One of the biggest common side effects from the kind of chemo I’m taking is something called hand-foot syndrome.

When my doctor first warned me about it, it didn’t sound all that serious. The skin on the palms of my hands and soles of my feet would thicken and crack, maybe blister and peel. She recommended lots of lotion. Ok, fine. A little bit gross but not really a big deal. But what I didn’t initially understand (was not told, but later figured out) is that this syndrome can cause permanent nerve damage; permanent tingling, burning and pain, that can interfere with walking and in particular interfere with higher impact activities like hiking and jogging.

If you ask me my goals for my life, assuming I get out of all this alive, among my top goals is hiking. I want to swim, hike, jog, bike, hang out with my friends, and live closer to my kids. That’s all I want in life. Sorry, no grand plans to save the world. I just want to be walking through the woods with people I care about.

The tingling/burning in my hands and feet got so bad on Saturday night that I didn’t sleep well. On Sunday we called the nurses line and the nurse on duty told us to back off on the chemo a bit, and to start taking gabapentin. Well, I know of gabapentin as a painkiller. And I’m not interested in masking the current pain symptoms; I’m interested in making sure I can hike when I’m done with all this. The nurse said the gabapentin isn’t just a painkiller; it can actually decrease the potential for nerve damage.

I was dubious, but I researched it and it looks like there’s a slight bit of evidence that gabapentin might help regenerate nerves in some situations, maybe. My conclusion of “maybe” was confirmed by my sister who said, “While its primary purpose is nerve pain treatment, there was one study (not very large and not very well done) that did suggest it had some actual preventative capacity when it came to overall health of nerve conduction. Possibly it could be helpful in preventing any long-term sequelae…it does have a lot of side effects…if you can tolerate a low dose, it shouldn’t be harmful, maybe helpful. Probably worth a try.”

Gabapentin is also an anticonvulsant used for epilepsy. It’s a serious drug with a long and scary list of side effects. I often don’t react well to drugs. I’ll start on low dose and see how it goes.

I’m taking a short break from the chemo Sunday and today. We’re getting the gabapentin today, and I hope to start the chemo back up tomorrow at a 2/3 dose. I will try to complete the rest of the week of chemo if the nerves in my hands and feet calm down. I’ve had some tingly pain off and on for a few weeks, but it’s been constant and more severe since Saturday.

When I first started chemo, I didn’t realize it would be an exercise in “how much can I tolerate?” I thought I would take my rounds of chemo, feel sick, and deal with it. I imagined a lot of puking, which, while not fun, is something I can handle. Instead it’s this big guessing game, trying not to end up with permanent damage, with my health providers not really knowing any better than I do how much chemo I should be taking and for how long.