Not doing so well today . . . lots of side effects from Chemo Round 3.

Keeping bundled up even inside to help
alleviate the side-effects of this week's chemo.

I completed Round 3 of chemo yesterday, and the portable pack was removed at 1:30 p.m. Things weren't too bad yesterday, but today I'm feeling a number of symptoms. I think it's a combination of the weather changing from spring-like in the 50's and 60's for the past several days, to the arrival yesterday of a winter storm that dumped about 6" of snow and plummeted temps into the low 20's. Many of my side-effects are exacerbated by cold weather, so I suppose I shouldn't be surprised.

Here's what's plaguing me this round of chemo:

First-bite syndrome: This is the worst side-effect. The pain, lasting something like 15-30 seconds, is excruciating. And if you take your first bite on only one side of your mouth, you get to relive the pain on the other side on the next bite. So the trick is to take food in the middle of your mouth, bite down with the food in the middle of your teeth, and brace yourself for the ensuing waves of pain -- feels something like someone accessing your jaw with an electric drill. I've had root canals, tooth extractions, cavities filled. None of those experiences compare to the pain of first-bite syndrome.

After the pain subsides, the front of my face aches. I feel like I've been punched in the nose. I also feel slight nausea from the pain. Sometimes I feel I could pass out from the waves of pain, and have to steady myself against a wall or piece of furniture until the pain diminishes.

Very little is available online about first-bite syndrome. I did find an abstract from the 2013 issue of European Annals of Otorhinolaryngology, Head and Neck Diseases. The syndrome is described as:

. . . a secondary to loss of sympathetic innervation to the ipsilateral parotid gland. This loss of innervation would lead to denervation of sympathetic receptors located on parotid myoepithelial cells. These cells, which also possess parasympathetic receptors, then become hypersensitive to parasympathetic stimulation, resulting in a very intense (supramaximal) contractile response at the first bite, inducing the head and neck pain and/or cramps experienced and described by the patients.

First-bite syndrome is a malady of the Parotid gland.
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Interestingly, the article does not address first-bite syndrome as a symptom of chemotherapy. I have found no literature on that relationship.

Facial numbness: I've experienced considerable facial numbness today, probably because of the cold weather. This feels like I've been given an injection of Novocaine. I lose control of my facial muscles around my mouth and my tongue feels thick. My eyes are also affected, causing twitching and swelling of the eye socket, making it difficult to see (dangerous when driving!). The numbness is intermittent, accompanied by dull pain. The numbness can come on just going from the main part of the house to the basement (where it's several degrees colder).

Difficulty swallowing (Dysphagia): There is the feeling that something is stuck in my throat, like a small piece of food. Even drinking water is painful, a scratching feeling as the water passes along my esophagus. Interestingly, the irritating feeling is more pronounced with liquids; solid foods are easier to swallow. This may just be a "stiffness" in my throat, or a swelling or narrowing of my esophagus. I haven't mentioned this yet to my oncologist; will be sure to send a note this week.

What's bad about this side-effect is it keeps me from drinking the water I need to stay hydrated and to flush the chemo out of my liver.

I've found it easier to drink through a glass straw than to drink directly from a cup or glass. Also, hot tea temporarily reduces the scratching feeling (at least for me).

Overall fatigue: Feeling so tired it's a struggle to hold up my head. After a relatively good night's sleep, I was so exhausted at 11:30 that I went back to bed and slept for two hours. Probably would have slept longer; I was awoken by the roar of my neighbor's snow blower. I pulled myself out of bed, knowing I still had to shovel my porch so the mailman could deliver the mail at 3:00. After that exertion of exercise, I spent the next several hours in my recliner staring mindlessly at the television. I had plans tonight to get together with friends; I'm too tired to go.

Blurred vision and sensitivity to light: Turns out this is not an uncommon side-effect of chemo. I've had intermittent blurriness, but this morning I woke up with my vision so blurred I was blinded. It took several minutes for my vision to clear. I also had blurred vision last night, so badly that I had to put down the book I was reading.

This is a serious side-effect that can cause permanent damage to my eyes. It's recommended that I make an appointment with an ophthalmologist for an evaluation.

One course of treatment is the apply a warm washcloth to my eyelids to reduce the inflammation cause by the chemo. I'm going to try that tonight!

Click here for more information on blurred vision from the Cancer Treatment Centers of America.

Numbness and tingling (Peripheral Neuropathy):

Between 30 and 40 percent of patients undergoing chemotherapy experience chemotherapy-induced peripheral neuropathy (CIPN), a progressive, enduring, and often irreversible condition, causing pain, tingling, numbness and sensitivity to cold, beginning in the hands and feet and sometimes progressing to the arms and legs. Though the symptoms are mainly sensory, in some cases motor nerves and the autonomic nervous system are affected. CIPN often follows the first chemotherapy dose and increases in severity as treatment continues, but this progression usually levels off at completion of treatment. The platinum-based drugs are the exception; with these drugs, sensation may continue to deteriorate for several months after the end of treatment. Some CIPN appears to be irreversible. Pain can often be managed with drug or other treatment but the numbness is usually resistant to treatment.

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CIPN manifests in a number of ways for me:

1. Numbness, tingling (feeling of pins and needles) of hands and feet, with a simultaneous burning feeling. This doesn't hurt, per se, but it is annoying and uncomfortable, can limit my ability to use my hands, and makes walking (and driving a vehicle) painful.
2. Numbness of my face and especially around my mouth.
3. Loss of fine motor skills. Once I couldn't type or use my mouse. This lasted for up to an hour. It was really scary! Today, it's been minimal, but I'm aware of the neuropathy.

Most of these neuropathies are exacerbated by "extreme weather conditions" -- which means undergoing chemotherapy in northeast Wisconsin during winter months presents special challenges.

Click here for more information on Peripheral Nueropathy.

Nausea: This is ongoing since the first treatment. Fortunately, I've not been debilitated by the nausea, and I've never thrown up. In fact, I've refused the home doses of the nausea medication, since it's laced with steroids. For me the nausea is just that lingering sense that my stomach is unsettled. When I'm nauseated I crave rice. So that's what I eat. Organic, of course. After a serving or two, I begin to feel much better.

Lack of appetite: Since I've got quite a bit of weight to lose, can't really complain about this! In fact, I've lost almost 25 pounds since early January. However, I do have to be careful to stay healthy. I do this by adding a plant-based protein supplement to some of my foods.

Chills and hot flashes: I didn't have hot flashes during menopause -- but I get them from the chemo. Mostly in the morning, when I wake up. Otherwise, I sometimes find it difficult to stay warm. I don't want to crank up the heat (it's expensive!), so I'll wear a knitted hat and scarf. I stick with natural fibers (nothing synthetic) -- all Alpaca -- to stay warm.

Bottom on fire: Chemo leaks out of your orifices, and in your private areas that means it leaks into a dark, moist place. Bowel movements and urinating often burn (like you've eaten an entire case of cayenne pepper) and can create severe irritation to the sensitive skin around the anus and vagina. One morning, out of the blue, the skin around my anus was so tender I could hardly wipe myself, even with the baby wipes I have come to rely on. After a couple of days, I could barely even "pat" myself clean for the pain from the stinging. It also hurt to walk, as the skin on either side of my bottom chafed against itself. Then I noticed blood on the baby wipes. I immediately made an appointment with my GP. After examining me she explained the condition as essentially "severe diaper rash". I was prescribed a non-steroid creme to apply 4 times per day. After a couple of days the rash was completely gone. 

I realize there are people who are suffering much worse side-effects than I am. So, even though this list appears long, I acknowledge that, overall, I'm doing pretty well with this treatment. That said, I LOATHE this! It makes me feel vulnerable, weak, frightened, and angry, and I'll be damn glad when this is over!