The Side-Effects Samba

Treating side effects of cancer treatment is at times an intricate dance.

Aggressive, long-term cancer treatment can leave one with lingering side effects. Two side effects I live with are peripheral neuropathy and hot flashes. Both are pesky during the day, but are even more bothersome if they decide to flare up during the night and rob me of sleep. When I don’t get a solid eight hours of sleep, my chemobrain (another pesky side effect) gets noticeably worse.

When I started cancer treatment, I took Ambien to help me sleep — without it, I was awake many hours each night. But Ambien suddenly stopped working for me about a year after I started using it. After a relatively sleepless month, my oncologist recommended I take gabapentin about an hour before bedtime to reduce nerve pain from neuropathy, calm my hot flashes, and make me sleepy. I took 300 mg of gabapentin at bedtime and slept well most nights, even though the drug left me groggy for a few hours every morning.

A couple of weeks after starting gabapentin, I started taking Xalkori as part of a clinical trial. A known side effect of Xalkori is edema. If edema occurs with Xalkori, it usually isn’t severe until the patient has been on the drug for several months. Lucky me — my legs blew up like balloons after just a few weeks. The edema and resulting joint pain were severe enough that I asked my trial oncologist about reducing my Xalkori dose. After weighing my options, I decided to stay on the full dose of Xalkori in hopes it would maintain my No Evidence of Disease status longer. I managed the edema somewhat with compression hose, a diuretic, and exercise.

My mental fuzziness seemed to increase gradually over the months, so I had another discussion with the oncologist about managing side effects. I decided to try melatonin at night to help me sleep, and reduce the gabapentin to 100 mg at bedtime. My sleep was unaffected, and I seemed a bit more alert in the morning, although the neuropathy in my feet started to increase.

About a month after this meds change, my edema decreased. I asked my oncologist if the reduced edema might be related to lowering my gabapentin dose, and he said yes. This was the first time I’d heard that gabapentin might cause edema. I reread the gabapentin drug insert, and there it was in the common side effects: “swelling in your hands or feet.”

So, if I completely eliminate the gabapentin, my mental clarity might increase and the edema might lessen or even disappear, but the neuropathy (which was beginning to interfere with my walking) and the sleep problems might increase. Do I dance left, or do I dance right?

Two weeks ago, I chose to stop taking gabapentin. As I’d hoped, the edema has gone down; it’s not completely gone, but I can skip the compression hose and diuretics some days without my legs becoming uncomfortably puffy by evening, and the joint pain has eased. Surprisingly, my neuropathic foot pain is a bit better. However, the nighttime hot flashes came back with a vengeance, and I haven’t had a good night’s sleep since. Ironically, the lack of quality sleep makes me even more groggy during the day.

It’s all a dance. Now if someone could just tell me what step comes next ….

Changing My Mind: Cancer Side Effects, Phase 2

Cancer and its treatments cause cognitive and psychological changes for some patients. Even if we aren’t aware of a physical reason for it, it’s just as real as neuropathy and tissue damage.

The cognitive side effects of cancer treatment are known in the media as “chemobrain,”
though the symptoms can be caused by more than just chemotherapy. My cognitive symptoms are typical: problems with memory, attention, multitasking, word finding. I not only can’t remember details of an event, I don’t remember the event even happened. I lose track of what I intend to say in the middle of a sentence. When my son steps into the room to ask me a question, just noticing his presence is enough for me to lose track of what I’m typing. I tell my husband to give me a banana, when what I tried to ask for was milk.

Some changes wax and wane with treatments. The prednisone taken for lung inflammation gives my entire family a new appreciation of “Roid Rage.” The gabapentin taken for nerve pain and sleep serves me brain fog with breakfast.

Some changes can be due to the cancer itself. Tumors and blood clots in the brain or lungs can reduce oxygen supply to the brain and interfere with brain function. I’ll deal with that if it happens to me (knock on my wooden head).

Some changes which I had attributed to treatment-related fatigue persist even as fatigue improves. My patience runs thinner than it did before cancer treatment. Sometimes I become irritable or angry for no discernible reason. Towards the end of the day, I have more difficulty seeing the other side of a disagreement or bestowing benefit of the doubt. I generally try to be home and winding down by 8 PM so I don’t “hit the wall” and run out of positive energy amidst unsuspecting people.

Some cognitive changes are positive ones. My cancer journey gives me a greater understanding of those who face challenges navigating physical barriers, communicating thoughts clearly, or remembering instructions for a task. When someone with a chronic illness tells me they don’t have the energy for some activity, I know exactly what they’re talking about.

The largest change I see in me is … a change in perspective. I feel a drive to LIVE each day, not just let it meander by me. I’m more inclined to be choosy about how I spend my remaining time (however long that might be) and with whom I spend it. I’m less willing to be with people who dwell on small talk, speak ill of others frequently, or lack compassion. I seek out positive, creative people who are willing to reveal their true selves, share mutual interests, and strive to make a difference in the world. That’s the kind of person I want to be.

So, cancer is changing my mind. I’m living more consciously than ever before. Bi-monthly PET scans remind me the Fates could cut my lifeline at any moment. I intend to make that lifeline as strong and as shiny as possible, for as long as possible.

Coping with Side Effects

I have a 20-pound lifting limitation on my right arm from radiation damage. My right brachial plexus — the nerve bundle that controls the right arm — took a full dose hit last summer.

I take an engineering approach to such limitations. I find myself looking at boxes I need to move and thinking, “If I take out these books, then the box is only 40 pounds, and if I divide that by two arms …”

I do not tell my radiation oncologist about these moments.

I hope he’s not reading my blog today.