Young adults: treatment side effects

It can be hard to cope with changes in your body caused by side effects. In our video, Hinna and Leanna talk about how blood cancer treatment affected them physically:

Your hospital team can help with side effects by giving you medicine. Or they might tweak your treatment. So don't hold back - tell them how you feel.

Sometimes, something as simple as a ginger biscuit can make all the difference!

In this video, Hinna and Leanne share what helped them:

We've explained some of the most common side effects of blood cancer treatment below. Remember, you won’t get all of them. Everyone is different, even on the same treatment.

You can also read what four other young people went through, and how they coped with the side effects they got.

Extreme tiredness

You may have fatigue, a kind of tiredness that doesn’t get better with sleep. It can last for several months after your treatment has finished. A bit of gentle exercise can help. Leanne said: "With exercise, you’ve got to find the level that’s right for you. I walk the dog – it gets me up in the morning."

Muscle weakness

You may find it’s harder to do simple activities like climbing stairs. This can happen while you’re taking steroids or some anti-cancer (chemotherapy) drugs.

Chemo brain

Chemotherapy can affect your memory and make it difficult to concentrate. This is sometimes called brain fog.

It may go on after your treatment has finished but it should get better over time.

Hinna said, "With chemo brain you just have to explain why you’re a bit forgetful and slow."

Loss of feeling (neuropathy)

Some drugs can cause nerve damage (peripheral neuropathy). This can make you lose feeling in your fingers and toes. You might get pins and needles or feel pain.

Changing your drug doses can help with this, so talk to your nurse or doctor.

Losing interest in sex

Sex may be difficult because you don’t feel well, are too tired, or just don’t feel like it.

Sometimes, the drugs you’re taking can affect your hormones, so if you have symptoms that are bothering you, speak to your doctor or nurse.

In our video, Leanne talks frankly about sex when you're on daily chemo tablets:

Weight changes

You might lose weight because you don’t feel like eating. If you take drugs called steroids as part of your treatment, you might temporarily put on weight. You might also eat more because steroids make you feel hungrier than usual.

Emily said, "You might put weight on when you take steroids. But remember you’re not going to be on them for ever."

We have more information about coping with changes to your body or appearance.

Hair loss

Some chemotherapy drugs can cause hair loss. This can include your eyebrows and eyelashes. How long it takes to grow back varies. For most people it’s a few months.

Synthetic wigs are available on prescription from the NHS in Scotland, Wales and Northern Ireland. So you should be able to get one for free.

In England, can get a free wig from the NHS if:

• you’re aged 16 to 18 and in full-time education
• you're staying in hospital for treatment (an inpatient)
• you're on a low income.

We have more information about getting a wig and other ways to cope with hair loss.

Skin changes

Your skin can become sensitive or itchy and it might change colour slightly. You might bruise more easily.

Taking steroids can lead to stretch marks, and you may have small scars from tests or treatment.

Leanne said, "I’ve noticed with leukaemia I’ve gone paler. I’ve changed my make-up so you can’t see the join."

Changes to your nails

Your nails may change colour or get thinner. You might see lines and spots caused by chemotherapy, but these will grow out.

Changes to your sense of taste

Chemotherapy can have a surprising effect on how food and drink tastes. This can put you off certain foods.

Sickness and vomiting

Feeling sick and being sick are common side effects of treatment. Your hospital team will give you anti-sickness drugs (anti-emetics) to help with this.

There are lots of options so if one drug doesn’t work, you can try another one.

As Jamie said, "Don’t come off the anti-emetics too quickly, because you’re not feeling sick for a reason. And the reason is the anti-emetics!"

Constipation

Chemotherapy can affect your bowels. Some people have difficulty pooing. Your nurse can advise you on this but eating a healthy diet and taking laxatives will help.

Sore mouth or gut

Blood cancer treatment can make your mouth or gut sore (mucositis). Painkillers will help with this. It should get better as your body recovers after each round of chemotherapy.

Your immune system normally works hard to keep you well. Blood cancer affects your immune system and treatment can make it weaker too.

So you may be more likely to get infections like colds, flu and chest infections. Your risk of getting seriously ill from covid is also higher than other people your age.

If you think you have covid, you might need special treatment. Find out how to get treatment for covid.

With blood cancer, infections can get worse quickly. There's a risk of developing something called sepsis if an infection isn't treated in time. This is a serious condition which needs hospital treatment.

Get help straight away if you think you have any symptoms of infection:

• If you have been given an emergency number, call it and follow their advice.
• Otherwise, call 999 or get someone to take you to you to the nearest A&E.

Find out how to avoid infection.

Some blood cancer treatments can affect your ability to have a child. But there may be ways to increase your chances of having a child in the future.

Speak to your hospital team as soon as you can. Read about fertility and ways to preserve it.

In this video, Hinna shares how she feels about her fertility options:

Cancer on board

Sends out badges you can wear to make it easier to let people know you have cancer.

Future Fertility Programme

Offers advice and support to young adults whose fertility may be affected by cancer treatment.

Little Princess Trust

Offers free real hair wigs for young people with cancer (any gender) up to the age of 24.

Look good feel better

Offers support if side effects of cancer treatment change your appearance.