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Managing chemotherapy: The side effects people didn't expect

While some side effects of chemotherapy are more commonly known, others might be talked about less. People will experience different side effects depending on the amount and type of chemotherapy drug they’re receiving.

Our resource on chemotherapy and other drug therapies can help you understand the different drug therapies used to treat cancer and ways to manage side effects. If you have any questions about chemotherapy, we’re here to help. You can contact our Cancer Information Helpline for support.

If you are starting chemotherapy and want to learn about some lesser-known side effects, our online support community on CancerConnection.ca have shared their experiences with chemotherapy side effects they did not expect.

1. Problems with thinking, learning and memory

Cognitive problems – thinking abilities like communication, reasoning, perception, judgement, learning, attention, memory, organization and problem solving – are more likely when chemotherapy is given in high doses or for a long time. Problems with thinking and memory associated with chemotherapy are commonly known as “chemo brain” or “chemo fog.”

On CancerConnection.ca, people shared experiences with their balance being affected and how daily exercises helped them manage. They also discussed cognitive problems, which subsided after treatment for some people, while others continue to experience it years later.

There are many ways to manage cognitive problems. Different medicines may help, depending on the type of cognitive issue you’re experiencing.

  • Cognitive training and rehabilitation can help re-teach thinking, reasoning or memory skills.
  • Occupational therapy and vocational rehabilitation can help with everyday tasks and job-related abilities.
  • Speech therapy, behavioural therapy and social skills training are especially helpful for children with cognitive problems and related learning difficulties.
  • Counselling can provide comfort to both you and your loved ones as needs change over time.
A physical therapist helping a person lift their arm.

2. Nerve problems

Certain chemotherapy drugs can cause nerve damage, which is often related to the dose. Neuropathy is damage to the nerves of the arms, legs, hands and feet. This causes pain, numbness, tingling, burning, swelling, muscle weakness and loss of reflexes in different parts of the body.

Some symptoms can include numbness, tingling, a burning sensation in the hands or feet, the inability to feel something hot or cold, muscle weakness, changes in reflexes, constipation, the inability to urinate, incontinence or erectile dysfunction.

In the CancerConnection community, some people shared how neuropathy was an unexpected side effect of chemotherapy that included pain in their legs that made walking difficult, and numbness in their face, hands, and feet.

For some people experiencing neuropathy, symptoms can get better over time but for others, the damage can be permanent. There are different ways to manage nerve damage caused by chemotherapy. If you’re actively receiving chemotherapy, your doctor might stop or lower the dose of the drug to prevent further damage. If you experience pain because of neuropathy, you may be given medication to manage it.

Read our tips for managing peripheral neuropathy in your daily life.

3. Pain in bones, joints and muscles

Different kinds of pain can affect people going through chemotherapy. People in our CancerConnection community experienced bone, joint and muscle pain, and shared their ways of managing it.

Those with joint, muscle and bone pain talked about exercise and movement being helpful. Some people used heat such as hot baths and heating pads to manage the pain. Some people’s pain started going away after chemotherapy ended while others continued to experience pain even after treatment.

Managing pain is an important part of your treatment plan, and your entire healthcare team can be involved in treating it.

Some treatment centres have specialized doctors and nurses to treat pain. A physiotherapist or occupational therapist can show you ways to move, be more comfortable or do things to prevent pain. Your pain control plan can include a combination of pain medicines, medical therapies, physical, psychological or complimentary methods.

See our tips for managing pain.

A person holding their knee with both hands.

4. Changes in taste, smell and appetite

It’s common for people to lose their appetite while going through chemotherapy. This can sometimes be because of changes in taste. Some people on CancerConnection shared how everything tasted like cardboard or was metallic, which made even drinking water unpleasant. Loss of appetite is usually temporary, and most people’s appetites return to normal after finishing treatment. See our tips for managing appetite loss.

Changes in smell can also happen because of chemotherapy. People on CancerConnection shared how they became more sensitive to smell, which sometimes caused nausea.

See our page on eating well when you have cancer.

5. Hearing and vision problems

Hearing problems can develop after some types of cancer treatment. They can develop during or after treatment or much later. Hearing problems as a result of chemotherapy are related to the dose and the type of drug. The higher the dose of chemotherapy, the higher the risk of damage. This damage may cause permanent hearing loss or changes in balance.

Certain chemotherapy drugs can also cause vision changes. Combining chemotherapy and radiation therapy can increase the risk for eye and vision problems. Sometimes these problems happen as late effects years after having cancer treatment.

A person touching their ear.

6. A sore throat and mouth

Chemotherapy can sometimes cause a sore mouth and throat – including redness, swelling and painful sores on the tongue, gums, lips or throat. This is more likely to happen with specific chemotherapy drugs, or when higher or many frequent doses are given.

Sore throats and mouths will usually heal about 2-4 weeks after treatment is finished. Talk to your healthcare team about an oral care plan. Taking care of your mouth and teeth while you’re receiving cancer treatment helps lower your chance of developing a sore mouth and throat.

7. Changes in hair, skin and nails

While hair loss is one of the most known side effects of chemotherapy, some people experience changes to their hair in other ways.

On CancerConnection.ca, people shared how their hair grew back a different colour than it was before and how their hairline, hair thickness or texture changed once it grew back. Some people’s hair can turn a yellowish or darker colour, and in some cases, may become curlier or straighter, finer or coarser. Chemo can make the hair thin and brittle, so it’s more likely to break than before.

Read about a cancer survivor’s experience with hair loss and regrowth.

Skin problems can also happen because of chemotherapy. When chemotherapy drugs are given through the vein (intravenously), they can cause skin and veins to become discoloured or darker. Other skin problems related to chemotherapy can include itching, peeling, the skin turning a yellowish colour or becoming more sensitive to the sun (called photosensitivity).

Chemotherapy can also cause changes to fingernails and toenails, such as yellowing, brittleness and cracking, lines across the nail, darkening or the partial separation of the nail from the nail bed. Your healthcare team can recommend ways to manage these changes to nails, such as ice baths for your hands and feet or over-the-counter nail-strengthening products.

The back of a person’s head with short hair.

8. Fatigue, weakness and loss of stamina

While fatigue is a common experience for people facing cancer, there are different reasons for it. It may be a symptom of cancer itself but for some people, the kind of treatment they’re receiving might cause fatigue. Certain medicines might make it worse.

People on CancerConnection shared their experience with fatigue, weakness and loss of stamina. Some shared how their strength was affected and how they still don’t have the stamina they once had, but have slowly gotten better with exercise. Some people shared how fatigue continued to affect them after treatment, but not daily.

Fatigue affects everyone differently. There are different ways to manage it by making changes to your behaviour and lifestyle. Your healthcare team can help you manage it based on its causes and your individual situation.

See our tips for managing fatigue.

9. Side effects that lasted longer than expected

Sometimes life after chemotherapy can involve managing side effects from treatment. While some side effects go away shortly after treatment is finished, some people deal with them months or even years later.

Our CancerConnection community shared some long-lasting effects such as:

  • Fatigue that continues, but not every day
  • Chemo fog that got better after chemotherapy but lingered years later
  • Chemo-induced neuropathy after treatment
  • Reduced stamina and energy
  • Joint pain
  • Fragile fingertips and nails

Read our resource about coping with the new normal in life after cancer treatment.

A doctor standing in front of a patient sitting on a hospital bed.

We're here to help

Whether you are about to start chemotherapy or you’re recovering from chemotherapy and want to learn about other people’s experiences, our CancerConnection community is a great way to find connection, support and tips to cope with chemo side effects.

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