Question: Chemotherapy

What does chemo/radiation feel like?

What a great – and difficult – question, thanks for asking! I bet there are a lot of writers out there who are wondering the exact same thing.

I’ll start out with a disclaimer: I’ve never had chemotherapy or radiation myself, so I can’t speak personally to how it feels. For that, I will direct you to some of the discussion boards, such as the American Cancer Society’s Cancer survivor’s network or the Cancer Council Online Community .

The second important aspect is that not all chemotherapy or radiation treatments are equivalent. The side effects of radiation for thyroid cancer will be very different than radiation of prostate cancer, which will turn be very different from a chemotherapy medication given for Leukemia. Since chemo/radiation is such a big field, I am going to start with chemotherapy. Next week, I’ll dig into radiation. For now, let’s dive in!

Part 1: Chemotherapy

Chemotherapy is a drug treatment that targets – and kills – fast-growing cells, such as cancer cells. Unfortunately, hair, skin, blood cells, and the cells lining your airways and gastrointestinal tract (mouth, esophagus, stomach, intestines) – called mucosal cells – are also fast-growing, and can be inadvertently targeted. This can lead to a host of side effects, including hair loss, mouth sores, nausea/vomiting, bleeding/easy bruising, light sensitivity, and constipation or diarrhea. Whole body symptoms, such as fatigue, weight loss, and pain, are also common.

Folfox

Since your character has colorectal cancer, let’s dig into the specifics of a chemotherapy treatment often used to treat colon cancer: Folfox (Folinic Acid + 5-Fluorouracil + Oxaliplatin). This isn’t the only treatment for colon cancer, but it is used very commonly. It can be used alone, or in combination with radiation therapy.

To receive treatment with Folfox, your character will first need to be hospitalized and given IV access – this can mean an IV in the arm (though this is rare), a central line (intravenous line connected to a vein in their chest), or a PICC line (a tube inserted in a vein in the arm, then threaded into a bigger vein in the chest). Your character will be pre-medicated – given meds to prevent nausea and other side effects – then be hooked up to the infusion. The infusion is a clear plastic bag filled with clear liquid, hooked up to a pump that looks like a miniature computer from the ‘90s. It will then drip into your characters’ IV site over the course of about 2 days. Your character might get a metallic tang in their mouth from the infusion, but if they get pain at the IV site, the nurses will need to slow down the rate of infusion. If your character already has a central line and has done well with Folfox in the past, they might even be able to take the infusion home with them, carrying around their IV bag and pump attached to their belt.

The infusion pump sometimes makes a grinding noise, like a CD-changer or a car shifting gears. Cancer patients have reported having Pavlovian responses – salivation or nausea – after hearing those noises even well after they’re finished their course of treatment¹.

Side Effects

The most common immediate side effects are nausea/vomiting, diarrhea, skin sensitivity to light (easy sunburning), watery eyes, mouth sores, and a metallic taste in the mouth. Sometimes, they may have pain at the infusion site. These side effects can start with the first infusion, so steps are taken to prevent them, including premedication with anti-nausea drugs. Mouth sores can be prevented if your character chews on ice; however, cold food or drinks can exacerbate another side effect, throat spasm. A less common side effect is skin reddening and peeling, especially on the palms of the hands and the soles of the feet, called hand-foot syndrome.

Another common side effect is myelosuppression – the bone marrow can’t produce blood cells fast enough. Blood cells die at a constant rate, so your character’s bone marrow is always making more. If the bone marrow can’t make new cells fast enough, your character will develop low counts of white blood cells, red blood cells, and platelets. Your character might feel breathless and/or fatigued (which can be significant), but the biggest concern is that they will also be at higher risk for infection, bleeding, and bruising.

Severe reactions are less common, but they do happen. An allergic reaction – causing rash, itching, and even trouble breathing – is a good reason for your character to stop chemotherapy. Rarely, chemotherapy regimens – including Folfox – can cause lung and heart symptoms, such as cough/wheezing, chest pain/tightness, or changes to the heart’s rhythm. These are serious side effects, and you should only give them to your character if you’re looking for a reason for them to get really sick or need to be taken off the chemotherapy.

One side effect that isn’t on that list is hair loss. Though Folfox can cause hair thinning, it doesn’t cause hair to fall out the way other chemotherapy drugs do. And if your character is on a drug that does cause their hair to fall out, remember – it’s not just the hair on their head that goes. Most docs can tell a cancer patient not because of their bald head, but because of their lack of eyebrows and eyelashes.

Folfox is administered every two weeks for a minimum of six months – more if your character had metastases or other high-risk features. At the end of the course of treatment, some infusion facilities have your character ring a bell, so that everyone knows they’ve finished their course. How would your character react to being made to ring a bell announcing to the world that they’ve finished their chemotherapy?

Long-Term Effects

Of course, there are long-term effects of chemotherapy. In the first year after treatment with chemotherapy, fatigue is the #1 complaint². Fatigue can be severe, impacting your character’s ability to live their life as they wish, and it doesn’t improve with sleep. For some, fatigue improves quickly, but others – especially those who have received bone marrow transplants – may suffer for years.

Pain is long-term side effect, as some chemotherapies can target the nerves. This causes a ‘peripheral neuropathy’ – aka nerve pain and loss of sensitivity – that can be difficult to treat. Nerve pain feels different than other types of pain; it is often described as tingling or burning and is especially frustrating because there is nothing visibly wrong. It most likely to be felt in the fingers and toes at first, though it can work its way upwards.

Weight changes can also be a long-term side effect of chemotherapy. Certain kinds of chemotherapy can lead to dry mouth, mouth sores, or loss/change of taste that can make your character reticent to eat. While these changes tend to be worst during the course of treatment, they can linger, leading to long-term weight loss. Surprisingly, weight gain can also be a problem, especially if your character had certain kinds of chemotherapies for breast cancer.

Summary

Chemotherapy drugs interfere with cell replication, killing off fast-growing cancer cells. Other fast-growing cells, such as hair, blood cells, and mucosa become collateral damage. The breakdown of these non-cancerous cells is what causes all the side effects.
Generally, chemotherapy results in a host of nasty side effects, including nausea/vomiting, diarrhea, hair loss, immune suppression (due to low white blood cells) and anemia (low red blood cells), mouth sores, dry mouth, fatigue, weight loss, and nerve pain.
Not all chemotherapy drugs have the same mechanism, and so each drug will have slightly different side effects
Folfox is a chemotherapy used to treat colon cancer. It can be used as monotherapy, or in combination with radiation.
Allergic reactions, chest pain, and difficulty breathing are severe reactions that might be enough for your character to need to stop their chemotherapy.

Whew. All right, so that is chemotherapy. Next week, I’ll tackle radiation. Feel free to drop a comment if you have any questions/suggestions!

Sources

What does chemo/radiation feel like?

Part 1: Chemotherapy

Share this: