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Young adults: treatment side effects

Blood cancer treatment can cause some unwanted effects called side effects, which can make life difficult for a while.

Watch Hinna and Leanne share their experiences of side effects:

Hinna and Leanne talk about the physical effects of blood cancer treatment

Your healthcare team can help with side effects by giving you medication or adjusting your treatment, so don't hold back - tell them how you're feeling. And sometimes, something as simple as a ginger nut can make all the difference...

Hinna and Leanne talk about managing the effects of blood cancer treatment:

Find out what works - Hinna and Leanne share their tips on managing side effects

Here's a list some of the most common side effects of blood cancer treatment. You won’t get all of these side effects – everyone is different and reacts in different ways, even if they have the same treatment.

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.

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.

- Leanne

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.

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

- Emily

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.

I couldn’t even walk five metres to the toilet. But three months later I was going to night clubs.

- Jamie

Hair loss

Some chemotherapy drugs can cause your hair to fall out, including your eyebrows and eyelashes. How long it takes to grow back varies, but for most people it’s a few months.

I cut my long dark hair off and gave it to charity, because I was trying to make a negative thing into a positive.

- Hinna

NHS wigs

Synthetic wigs are available on prescription from the NHS in Scotland, Wales and Northern Ireland.

In England, you’re entitled to a free wig from the NHS if you’re aged 16 to 18 and in full-time education, are a hospital inpatient, or on a low income.

Skin changes

Your skin can become sensitive or itchy and it might change colour slightly. You can also find you bruise more easily. Taking steroids can lead to stretch marks, and you may have small scars from tests or treatment.

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

- Leanne

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, and this can put you off certain foods. A change to your sense of taste can also be a symptom of coronavirus, so always tell your healthcare team.

Always take mints to chemo because it can give you a weird taste in your mouth.

- Emily

Sickness and vomiting

Feeling nauseous and vomiting are common side effects of treatment. Your healthcare team will give you anti-sickness drugs called anti-emetics to help with this. There are lots of options so if one doesn’t work, you can try another one.

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.

- Jamie

Constipation

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

You don’t realise how much you miss a good poo until you can’t have one!

- Hinna

Sore mouth or gut

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

Infection

If you have chemotherapy you may have a higher risk of getting infections like colds, flu, chest infections, and thrush. Sometimes an infection can develop into a serious condition called neutropenic sepsis which needs treatment straight away. You're also more at risk of serious illness if you get coronavirus.

My sore throat turned into neutropenic sepsis. Call your hospital straight away if you have an infection to check if you need help.

- Leanne

Chemo brain

Chemotherapy can affect your memory and make it difficult to concentrate. It may last longer than the treatment but should improve over time.

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

- Hinna

Loss of feeling (neuropathy)

Some drugs can make you lose feeling in your fingers and toes, or give you pins and needles or sometimes pain. Changing your drug doses can help with this, so talk to your nurse or doctor.

Loss of 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.

Find out what Leanne has to say about sex and chemotherapy:

Leanne talks frankly about sex when you're on daily chemo tablets

Fertility issues

Some blood cancer treatments can affect your ability to have a child in the future, but there may be ways to increase your chances of having one when you’re ready. Speak to your healthcare team about your options as soon as you can.

Hinna talks about being offered the chance to freeze her eggs:

Hinna shares how she felt about her fertility options

More about infection

Blood cancer affects your immune system, the blood cells and organs that fight infection and keep you well. Treatment can also make your immune system weaker.

If you have blood cancer, you could be more likely to get bacterial infections (such as chest infections) and viruses (like colds and flu). Your risk of getting seriously ill from coronavirus is also higher than for someone else your age.

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

Contact your healthcare team straight away for advice if you think you have symptoms of infection:

  • fever (temperature higher than 38°C)
  • low temperature (less than 36°C)
  • shivering
  • sweating
  • feeling confused
  • a sore throat or cough
  • rashes or swelling
  • frequent watery poos (diarrhoea)
  • a burning or stinging feeling when you pee
  • fluid (discharge) with an unusual smell, colour or texture in your vagina, or itching in or around your vagina
  • an unusually stiff neck
  • achy, flu-like symptoms
  • generally not feeling well.
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Talk to other people affected by blood cancer

Hear from and connect with people who understand.

Join our Online Community Forum

Coronavirus and shielding

Many people with a diagnosis of blood cancer were recommended to shield when lockdown started in March 2020. Shielding means staying at home to lower your chance of catching coronavirus.

The national advice to shield has finished now. But in areas where there’s a local lockdown, people who are at high risk from coronavirus may be advised to shield again.

Your healthcare team might also tell you it’s best to shield if they think you’re particularly at risk, for example, if you’re having treatment, or waiting to start treatment. You might make your own decision to shield because you feel it’s safer.

Even though government advice to shield has stopped, there's still some practical support if you want to be extra careful about going out.

Coronavirus has made everyone more careful about washing their hands and keeping their distance, and staying away from everyone if they have any symptoms. This is a good thing, as it lowers your risk from infections in general, not just coronavirus.

We have more information about coronavirus and blood cancer.

If you think you have coronavirus

If you have blood cancer and you think you may have symptoms of coronavirus, don’t contact NHS 111 - speak to your healthcare team straight away. It’s important to get help early.

Other places to get help and support

Help with fatigue

Children's Cancer and Leukaemia Group

A charity that funds research and provides information and support for children and young people with cancer.

https://www.cclg.org.uk/

Cancer on board

Sends out a badge so you can get a seat on your commute without having to ask.

http://canceronboard.org/

Help with diet and exercise

Trekstock

Offers advice for younger people on living healthily after cancer treatment.

https://www.trekstock.com/

Help finding a wig

Little Princess Trust

Offers free real hair wigs for anyone with cancer (male and female) up to the age of 24.

https://www.littleprincesses.org.uk/

Help with physical and emotional well-being

Look good feel better

Offer support with appearance-changing side effects for women and men undergoing cancer treatment.

https://www.lookgoodfeelbetter.co.uk/

Help with fertility issues

CLIC Sargent

Provides social and community workers in many specialist TYA (teenagers and young adults) treatment units around the country.

https://www.clicsargent.org.uk

Future Fertility Trust

Offers the chance to freeze ovarian or testicular tissue if other ways to preserve your fertility aren’t an option.

http://www.futurefertilitytrustuk.org/

Teenage Cancer Trust

Provides opportunities for young people aged 13 to 24 with or after cancer to meet others in similar situations.

https://www.teenagecancertrust.org/get-help/how-we-can-help/support-programmes

Videos

The videos on this page were shot before the coronavirus pandemic. Some activities described might not be possible at the moment. See our guidance on staying safe.