Chemotherapy! The Bad & the UGLY Side Effects

PubMed

***My personal opinion is that Chemotherapy takes your “Quality of Life” and if losing that is not important then what is?? Chemotherapy patients have a 55-60% chance of recurrent cancer within 5 years and most die from that. But in the interim, they suffer the terrible side effects and then die anyways, and what quality is their life? Poor. Seriously think about using Natural Alternatives Products. I did, I am a survivor and no side effects. A Personal Choice!!  Brighter-works.ca

The Bad and the UGLY side effects

Chemotherapy drugs can damage healthy, fast-growing cells, such as the new blood cells in bone marrow or cells in the mouth, stomach, skin, hair and reproductive organs. When healthy cells are damaged, it causes side effects.

Understanding side effects

Everyone reacts to chemotherapy treatment differently. You may have many side effects or a few. Whether you experience side effects and whether they are mild or severe can depend on the type and dose of drugs you are given.

Your reaction can also change from one treatment cycle to the next. If you have side effects, they may start during the first few weeks of treatment and occasionally become more intense with each treatment cycle.

Before treatment begins, your doctor, pharmacist or nurse will discuss the side effects to watch out for or report, how to help prevent or manage them, and who to contact after hours if you need help.

Keep a record of side effects

It can be useful to keep a record of your chemotherapy treatment and any side effects you develop. This will help you remember when you had side effects, how long they lasted and what helped to make them better.

You can use a notebook, diary or an app on a smartphone or tablet.

Tell your treatment team about all side effects. They will be able to suggest ways to manage the side effects or, if appropriate, they may change the treatment schedule or arrange a break.

How long side effects may last

Most side effects are short term, but some may be permanent. Side effects tend to gradually improve once treatment stops and the normal, healthy cells recover. Most side effects can be managed.

Some side effects from chemotherapy may not show up for many months or years. These are called late effects. Before treatment starts, talk to your doctor about whether you are at risk of developing late effects and ways to prevent them.

Long-term and late effects of treatment

Permanent side effects of chemotherapy may include damage to your heart, lungs, kidneys, nerve endings or reproductive organs.

If damage to your heart muscle or lungs is a possibility, your doctor will monitor how your heart and lungs are working and adjust your chemotherapy if early changes are seen.

Occasionally, many years after having chemotherapy, some people develop a new, unrelated cancer. The risk of this is very low but can increase with factors such as continuing to smoke or rare genetic conditions.***55-60% is NOT low!!!

If you notice symptoms, even many years after treatment, ask your GP whether they could be related to the cancer treatment you received.

Ask whether your hospital has a late effects clinic to help you manage any side effects you may experience after treatment. 

Record your treatments

List the doses and names of your chemotherapy drugs, and the names of your specialists. This will save time if you become ill and need to visit a hospital emergency department.

Make sure you tell the hospital staff that you are having chemotherapy, or other therapies such as targeted therapy and immunotherapy

Blood-related side effects

Blood cells are made in the bone marrow, which is the spongy part in the centre of the bones. The bone marrow makes three main types of blood cells, which have specific functions:

• red blood cells – carry oxygen around the body

• white blood cells – fight infection

• platelets – help blood to clot and prevent bruising.

New blood cells are constantly being made in the bone marrow. These rapidly dividing cells can be damaged by chemotherapy, and the number of blood cells (your blood count) will be reduced.

Low numbers of blood cells may cause anaemia or bleeding problems and increase the risk of infections. You will have blood tests when you start treatment and before each chemotherapy cycle to check that your blood count is adequate.

Anaemia

If your red blood cell count drops below normal, this is called anaemia. A reduced amount of oxygen circulates through your body, which can make you feel tired, lethargic, dizzy or breathless.

To minimise dizziness, take your time when you get up from sitting or lying down. Your treatment team will monitor your red blood cell levels. Let them know if you have any symptoms of anaemia during your course of chemotherapy.

Bleeding problems

A low level of platelets (thrombocytopenia) can cause problems. You may bleed for longer than normal after minor cuts, have nosebleeds or bleeding gums, or bruise easily. Periods may be longer or heavier.

Your treatment team will monitor your platelet levels. If chemotherapy causes severe thrombocytopenia, you may need a platelet transfusion. Ask your specialist to explain the risks and benefits of this procedure.

How to manage a low platelet count

• Be careful when using knives, scissors or needles, as you may bleed easily from small cuts or nicks.

• Use an electric razor when shaving your face or body to reduce the chance of nicking yourself.

• Wear thick gloves when gardening to avoid injury. This will also prevent infection from soil, which contains bacteria.

• Avoid contact sports and high-impact activities, as these could cause bruising or bleeding if you get knocked or fall over.

• When brushing your teeth, use a soft-bristled toothbrush to avoid irritating your gums.

• Wear comfortable, well fitting shoes indoors and outdoors to avoid cuts on your feet.

• Blow your nose with care.

• If you bleed, apply pressure to the area for about 10 minutes and bandage as needed.

  
  

Taking care with infections

"After chemotherapy I became very susceptible to infections. A small scrape can quickly become serious. But when I feel like an infection is coming on, I've learnt to see my doctor straightaway." – Brigita

Beausce Chenotherapy essentially destroys your immune system even a scratch can become infected easily and turn into a very serious, body wide infection. It is vitally important to monitor every bump and bruise to ensure that the skin is not broken to prevent infection from gaing hold. If you see a scratch starting to turn red, itch or become painful seek immediate medical assistance. Those with cats need to be especially careful due to the presence of cate feces in the fur of the paws and on their nails.

Fatigue

Feeling tired and lacking energy is the most common side effect of chemotherapy. It is known as cancer-related fatigue. You may also:

• develop muscle aches and pains

• have trouble thinking clearly or concentrating

• find it difficult to do daily tasks such as getting dressed, showering and cooking.

Fatigue can affect you suddenly and it doesn’t always get better with rest or sleep. If you find it hard to do everyday things, you might feel frustrated and isolated.

Fatigue caused by chemotherapy may last for months or years after a treatment, however, many people find that their energy levels return to normal 6–12 months after treatment ends.

While fatigue is a common side effect of chemotherapy, it can also be a symptom of depression. If you have continued feelings of sadness, you may have depression, and treatment may help.

How to manage fatigue

• Get extra rest the day of and day after chemotherapy to allow your body to recover.

• Plan activities for the time of day when you tend to feel most energetic.

• Try to be physically active with moderate exercise (e.g. walking, swimming) and some strength training (e.g. weights or resistance bands). See an accredited exercise physiologist or physiotherapist. They can develop a suitable program.

• Accept offers of help or ask family, friends and neighbours to help with shopping, driving, housework or gardening.

• If you have children, ask trusted family and friends to look after them during your chemotherapy sessions and to be on call in case you become unwell afterwards.

• Find ways to manage anxiety or sleeping difficulties as these can increase fatigue. Try relaxation or meditation techniques to help reduce stress, improve your sleep and boost your energy levels.

• Talk to your GP about trying acupuncture – some studies suggest this may help with reducing fatigue after chemotherapy.

• Check with your doctor whether your fatigue is related to low levels of red blood cells (anaemia). Anaemia can be treated.

• Speak to your employer about how they can support you (e.g. you may be able to take a few weeks off, reduce your hours or work from home).

• Eat a healthy, well-balanced diet and don’t skip meals.

• Try to limit how much you drink, smoke and vape.

Hair loss

Whether you lose your hair will depend on the drugs prescribed. Some people lose all their hair (alopecia); others find it becomes thinner, or they may lose only a little hair. Some people lose none at all.

Although losing hair from the head is most common, eyebrows, eyelashes, hair from your underarms, legs, chest, beard and pubic area can also fall out.

When hair loss does occur, it usually starts during cycle two or three – or sometimes after the first cycle. It may be sudden or happen gradually.

Before and while your hair is falling out, your scalp may feel hot, itchy, tender or tingly. Some people find that the skin on their head is extra sensitive, and they may develop pimples on their scalp.

It’s not unusual to feel sad or less confident. It may take time to adjust to how you look, then more time to feel good about yourself again.

Hair growing back

After treatment ends, it can take 4–12 months to grow back a full head of hair. When your hair first grows back, it may be a different colour, softer or curly (even if you have always had straight hair). In time, your hair usually returns to its original condition.

Scalp cooling

Some treatment centres provide cold caps, which may reduce hair loss from the head. Cold caps can only be used with certain drugs and some types of cancer, and they don’t always stop hair loss.

Worn while chemotherapy is being given, the cap is attached to a cooling unit. This reduces blood flow and the amount of chemotherapy drug that reaches the scalp.

Some people find the cold cap uncomfortable, and the cold temperature may be painful. If you are interested in trying a cold cap, ask your treatment centre if it is an option for you.

Tips for managing hair loss

• Keep your hair and scalp very clean. Use a mild shampoo like baby shampoo. If you want to use lotion on your head, use sorbolene. Check with your nurse before using any other hair or skin care products on the scalp.

• Comb or brush your hair gently using a large comb or a hairbrush with soft bristles.

• Explain to family and friends, especially children, that the chemotherapy may make your hair fall out.

• Consider cutting your hair before it falls out. Some people say this gives them a sense of control.

• Wear a wig, hat, turban or scarf, or go bare-headed – whatever feels best to you. If you prefer to leave your head bare, protect it against sunburn and the cold.

• If you plan to wear a wig, choose it before treatment starts so you can match your own hair colour and style. Or consider a new style or colour for a bit of fun.

• Some treatment centres have wig loan services; call Cancer Council 13 11 20 for more information.

• Try using a pillowcase made from silk, satin or bamboo as these smooth fabrics can decrease hair tangles.

• Avoid dyeing your hair during chemotherapy and for about 6 months afterwards to allow the hair to become stronger. Vegetable-based hair dyes may be gentler on the hair and scalp.

• If your eyelashes fall out, wear sunglasses outside to protect your eyes from dust and sunlight. 

• If your eyebrows fall out, you may wish to wear reusable eyebrow wigs or transfers until they grow back.

• Contact Look Good Feel Better. This program helps people manage the appearance-related effects of cancer treatment. 

  
  

How to manage appetite changes

Managing appetite loss

• Eat what you feel like, when you feel like it, but avoid going for long periods without eating.

• Try eating frequent snacks rather than large meals.

• Avoid strong odours and cooking smells that may put you off eating. It might help to prepare meals ahead and freeze them for days you don’t feel like cooking.

• If the taste of certain foods has changed, don’t force yourself to eat them.

• If you don’t feel like eating solid foods, have drinks enriched with powdered milk, yoghurt or honey. Or try easy-to-swallow foods such as scrambled eggs.

• Don’t use nutritional supplements, vitamins or medicines without your doctor’s advice, as some products could affect how chemotherapy works.

• Ask a dietitian for advice on the best foods or nutritional supplements to have during treatment and recovery.

  
  

Managing nausea

• Have a light, bland meal before your treatment (e.g. soup with dry biscuits).

• Sip water or other fluids throughout the day so that you don’t get dehydrated. Sucking on ice cubes or iceblocks, or eating jelly can also increase your fluid intake. If water tastes unpleasant, flavour it with ginger cordial or syrup. 

• If your stomach is upset, try drinking fizzy drinks such as soda water or dry ginger ale.

• If you wake up feeling sick, eat something small rather than skipping a meal.

• If you can’t keep fluids down, contact your doctor or hospital immediately. They may be able to treat the vomiting, or you may need to have fluids through an intravenous drip in hospital. 

  
  

Constipation or diarrhoea

Some chemotherapy drugs, pain medicines and anti-nausea medicines can cause constipation or diarrhoea. If your bowel habits have changed during your treatment, talk to your doctor, pharmacist or nurse.

For some people, there will be ongoing bowel problems after cancer treatment has finished. For ways to manage bowel issues at home, see the opposite page.

How to manage bowel changes

Constipation

• Eat more high-fibre foods, such as wholegrain bread and pasta, fruits and vegetables, bran, nuts and legumes (e.g. baked beans or lentils).

• If you are having treatment for bowel cancer, ask your treatment team if there are any foods you should or shouldn’t eat to help avoid constipation.

• Drink plenty of fluids, both warm and cold. Prune, apple or pear juice can work well.

• Do some light exercise, such as walking.

• Ask your doctor about using a laxative, stool softener or fibre supplement.

• Avoid using medicines delivered through the rectum (e.g. enemas or suppositories) as they may cause infection.

• Let your treatment team know if you have constipation for more than a couple of days. They will be able to help.

  
  

Diarrhoea

• Choose bland foods such as clear broth, boiled rice or dry toast. Avoid spicy foods, wholegrain products, fatty or fried foods, rich sauces, and raw fruits or vegetables with skins or seeds.

• It may help to eat foods that are high in soluble fibre such as oats, white bread, white rice, bananas, nuts and pasta.

• Limit alcohol, fruit juice, soft drinks, strong tea or coffee, and foods containing artificial sweeteners, as these stimulate the bowel.

• Drink plenty of water to help replace fluids lost through having diarrhoea.

• Talk to your treatment team. They may change the drugs or doses you are on or suggest other solutions.

• If diarrhoea is severe or ongoing, let your treatment team know. It can cause dehydration, and you may need to go to hospital.

  
  

Thinking and memory changes

Some people say they have difficulty concentrating, focusing and remembering things after they have had chemotherapy. This is called cancer-related cognitive impairment or, sometimes, "chemo brain", "cancer fog" and "brain fog".

Thinking and memory changes may be caused by treatment or medicines, fatigue and sleep problems, or how you feel, such as stressed or depressed.

These problems usually improve with time, although some people experience issues for years. Tell your doctor about any thinking and memory changes you are having, and if this issue is affecting your day-to-day life or your return to work.

How to improve concentration

• Use a calendar or smartphone features, such as reminders, alarms or lists to keep track of tasks, medical appointments, when to take medicines, social commitments, birthdays, etc.

• Write down anything you need to remember (e.g. to-do items, where you parked the car).

• Focus on one thing at a time (try not to multitask).

• Aim to get 7–8 hours of sleep each night. Deep sleep is important for memory and concentration.

• Do light exercise every day to help you stay alert and sleep better. 

• Learn a new skill (e.g. take up a new hobby or do crosswords or puzzles).

• Talk to your partner, family or workplace about changes to your memory and concentration. This can prevent misunderstandings, and they may be able to support you. 

  
  

Mouth problems

Some chemotherapy drugs can damage healthy cells in the mouth and cause mouth sores, ulcers (oral mucositis) or infections.

Chemotherapy treatment may also reduce the amount of saliva (spit) in your mouth, make your saliva thick or sticky, or make your mouth dry. This is called xerostomia or dry mouth.

If you notice any sores, ulcers or thickened saliva, or if you find it difficult to swallow, tell your doctor.

How to look after your mouth

• Discuss any dental issues with your oncologist or haematologist before seeing the dentist. If you need to have any dental work, tell your dentist you’re having chemotherapy.

• Use a soft toothbrush to clean your teeth twice a day.

• Rinse your mouth often – when you wake up, after you eat or drink, and at bedtime. Ask your doctor, nurse or pharmacist what type of alcohol-free mouthwash to use. They may give you a recipe for a homemade mouthwash. Talk to your doctor or nurse about medicines to relieve pain.

• Sip fluids, especially water, and eat moist foods such as casseroles or soups if you have a dry mouth.

• Soothe tender gums or mouth with plain yoghurt.

• Try sucking on ice during chemotherapy sessions. This may help to prevent mouth ulcers.

• Blend foods to make them easier to eat. Try smoothies made of fruit and yoghurt.

• Avoid smoking, vaping and alcoholic drinks, as well as very hot foods and spicy, acidic or coarse foods (e.g. nuts). These can all make mouth sores worse.

  
  

Skin and nail changes

Some chemotherapy drugs may cause your skin to peel, darken or become dry and itchy. During treatment and for several months afterwards, your skin is likely to be more sensitive to the sun.

You may find your nails also change and become darker than usual or develop ridges or white lines across them. Your nails may also become brittle and dry or lift off the nail bed. These changes usually grow out.

It is recommended that you avoid having your nails done at a nail salon, as this can increase the risk of infection during chemotherapy.

Ways to take care of your skin

• Use a soap-free wash when showering. Gently pat your skin dry with a towel rather than rubbing it.

• Use a good quality moisturising lotion or a cream containing the ingredient urea to help ease the dryness.

• Wear loose, non-restricting clothing. Choose clothes made from soft cotton fabric instead of rough wool or synthetic fibres.

• Use mild detergent to wash your clothing if you have sensitive skin.

• Don’t shave or wax until your skin has healed.

• Protect your skin from the sun when UV levels are 3 or above. Wear highprotection sunscreen (SPF 50), a broad-brimmed hat, protective clothing and sunglasses, and try to stay in the shade. This advice applies to everyone, but is especially important for people having chemotherapy.

• Avoid chlorinated swimming pools as the water can make skin changes worse. 

• If your skin becomes red or sore in the area where the intravenous device went in, let your doctor or nurse know immediately.

  
  

Sexuality, intimacy and fertility issues

Chemotherapy can affect your sexuality and fertility in emotional and physical ways. These changes are common. Some changes may be only temporary while others can be permanent.

Changes in sexuality

You may notice a lack of interest in sex or a loss of desire (libido), or you may feel too tired or unwell to want to be intimate. You may also feel less confident about who you are and what you can do.

There may be physical reasons for not being able to have sex or being interested in having sex (e.g. vaginal dryness or erection difficulties). Changes in how you look can also affect feelings of self-esteem and, in turn, your interest in sex.

If you have a partner, it may be helpful for them to understand the reasons why your libido has changed, and to know that people can usually have a fulfilling sex life after cancer, but it may take time.

Some partners may feel concerned about having sex. They might be worried about injuring or hurting the person with cancer, or being exposed to chemotherapy drugs during sex .

Even if some sexual activities are not always possible, there are many ways to express closeness. Talking openly with your partner about how you’re feeling can be difficult but it is often very helpful. It’s important to take time to adapt to any changes.

If you’re worried about changes to how you feel about yourself, your relationships or sexual functioning, you may find talking to a psychologist or counsellor helpful.

Using contraception

In most cases, your doctor will advise you to use some form of barrier contraception (condom, female condom or dental dam) during treatment and for a period after. This is to protect your partner from any chemotherapy drugs that may still be in your body fluids.

As chemotherapy drugs can harm an unborn baby, your doctor may talk to you about using contraception for some months after chemotherapy. Although chemotherapy often affects fertility, it doesn’t always.

If you are in a heterosexual relationship and sexually active, you will need to use a reliable form of contraception to avoid pregnancy while having treatment. Talk to your specialist immediately if you or your partner become pregnant.

Changes in fertility

Chemotherapy can affect your ability to have children (fertility), which may be temporary or permanent.

If you may want to have a child in the future, talk to your doctor before starting chemotherapy about how the treatment might affect you and what options are available.

Eggs (ova), embryos, ovarian tissue or sperm may be able to be stored for use at a later date.

This needs to be done before chemotherapy starts. In some cases, hormone injections can reduce activity in the ovaries and protect eggs from being damaged by chemotherapy.

Effects of chemotherapy on ovaries

Some chemotherapy can reduce the levels of hormones produced by the ovaries. This can cause your periods to become irregular or even stop for a while, but they often return to normal within a year of finishing treatment.

If your periods do not return, the ovaries may have stopped working, causing early menopause. After menopause, you can’t get pregnant naturally. Signs of menopause include hot flushes, night sweats, aching joints and dry or itchy skin.

Menopause – particularly when it occurs under 40 – may, in the long term, cause bones to become weaker and break more easily. This is called osteoporosis. Talk to your doctor about ways to manage menopause symptoms.

Effects of chemotherapy on sperm

Some chemotherapy drugs can lower the number of sperm produced and reduce their ability to move. This can sometimes cause infertility, which may be temporary or permanent.

The ability to have and keep an erection may also be affected (erectile dysfunction or impotence), but this is usually temporary. If impotence is ongoing, talk to your doctor.

“All my life I wanted to be a father. I didn’t want cancer to ruin my chances, so I stored my sperm before treatment started. I think of this as a bit of an insurance policy.”

Other side effects

Some other common side effects of chemotherapy may include hearing problems, watery eyes and body odours.

• Changes in hearing – Your doctor may recommend that you have a hearing test before you start treatment, and this may be repeated before each treatment cycle. You may be at risk of losing the ability to hear high-pitched sounds. Some types of chemotherapy drugs may also cause a continuous ringing noise in the ears known as tinnitus. These changes can happen alone or together and are usually temporary. Let your doctor know if you notice any change in your hearing.

• Watery eyes – This can be a symptom of a blocked tear duct, which can be caused by some chemotherapy drugs. Massaging the area regularly with a small towel soaked in warm water (compress) and using eye drops can help clear blockages. Let your cancer care team know if this issue is ongoing.

• Body odour – Chemotherapy can affect your sense of smell and you may notice that your body odour is unpleasant. Talk to your cancer care team if you are concerned about a change in body odour.

  
  

Neuropathy (A horrible side effect!)

Nerve and muscle effects

Some chemotherapy drugs can damage the nerves that send signals between the central nervous system and the arms and legs. This is called chemotherapy-induced peripheral neuropathy (CIPN).

Most often, the nerve damage causes tingling (“pins and needles”), numbness or pain in your hands and feet, and muscle weakness in your legs.

For many people, peripheral neuropathy is a short-term issue. But sometimes, it can last a longer time or be permanent.

If you experience numbness and tingling, tell your doctor or nurse straightaway. Your treatment may need to be changed, or the problem carefully monitored

How to manage numb hands or feet

"I had no idea that I would still be feeling tired five months after finishing treatment. I didn't know how to make it better and I was scared that's how it would be: that I wouldn't go back to normal, that I would never go back to having energy again." - Judy

Neuropathy is nerve pain caused by damaged nerves. It often affects the hands and feet, causing tingling, numbness, and unusual burning sensations. Some people also experience weakness and pain.

A Patient Perspective

A few summers ago, Andrea lost a flip-flop. Anyone can misplace a shoe. But this was the only thing between Andrea’s foot and the London pavement. She didn’t notice that it was gone.

She began dropping things then, too. “I couldn’t feel the pressure that I was applying when I was holding drinks. Quite often, they would just slip through my hands.” As they smashed and shattered on the floor, glasses didn’t feel like the only things Andrea was struggling to keep hold of.

She was a young mother with bowel cancer, grappling with her mortality while trying to do her daughter’s hair. And these symptoms weren’t caused by the disease. The thing taking her body away from her was the treatment.

“When you’re going through a cancer diagnosis, trying to be strong for your children and trying not to worry your family, just something as simple as breaking a glass, for the third time in a week, becomes so overwhelming,” Andrea says.

“I would very often just burst into tears. And someone looking in would probably think, ‘Why’s she overreacting?’ But it’s because it’s just another thing – and it has nothing to do with the cancer. What’s trying to save my life is causing me its own set of problems. It’s making my life worse.”

What was happening?

The problem Andrea was – and, to some extent, still is – dealing with is a type of nerve damage called chemotherapy-induced peripheral neuropathy (CIPN, or neuropathy from chemo).

The symptoms of neuropathy can range from mild pins and needles to losing all feeling and control of your hands and feet. It can be caused by cancer treatment, but doctors don’t have a way to treat it.

Why might chemotherapy cause pins and needles?

Chemotherapies are especially good at killing cancer cells, but they can also harm healthy ones. These include the peripheral nerve cells that carry messages back and forth between the brain and spinal cord (the central nervous system) and the rest of the body. When peripheral nerve cells are damaged, it becomes harder for the messages to get through.

Healthy vs Damaged Nerve

A damaged peripheral nerve cell (right) compared to a healthy one.

That’s a big problem when messages have to travel a long way, like to the hands or lower legs. Andrea’s peripheral neuropathy started as pins and needles on the soles of her feet. Then the feeling moved up to her hands.

“You know if you sleep on your arm and it goes a bit tingly? I thought that’s what had happened. But it progressively got worse until it was really overwhelming. “It’s not something you can ignore. When I’m sleeping, when I’m walking, when I’m sitting down – constant pins and needles.” 

Then, despite the hot summer, Andrea’s feet became freezing cold. Eventually, she began to lose all sense of them at all. It’s hard to walk when you don’t know where your feet are, so Andrea had to drive everywhere. That’s not much easier. If they weren’t strapped into heavy winter boots, the things on the end of her legs wouldn’t stay on the pedals. 

After her eighth cycle of chemotherapy, Andrea’s doctors had to stop giving her the platinum-based drug oxaliplatin. Although it was helping to shrink Andrea’s cancer, oxaliplatin is one of the drugs most likely to cause peripheral neuropathy. It was putting her at risk of permanent, life-altering nerve damage, so her last four cycles of treatment couldn’t include it. 

Why is chemotherapy-induced peripheral neuropathy such a problem?

Andrea is now cancer-free. In some cases, though, when side-effects stop cancer treatment, they shorten people’s lives.  

As Professor Alison Lloyd, from University College London, makes clear, “Neuropathy is one of the major limiting factors for chemotherapy.” That’s because, once a chemotherapy drug starts causing neuropathy, the only way doctors can stop it getting worse is by taking the drug away. 

The problem is made worse by the fact we can’t even test people to see who’s at risk of developing neuropathy from chemo. All doctors and patients can do is wait to see if symptoms will appear. Uncertainty like that can make treatment decisions much more difficult.

“We don’t have an identifiable biomarker, or sign in the body to predict which patients will suffer this toxicity and how severe it will get,” says Professor Lillian Siu, who’s been treating head and neck cancers, often with drugs that can cause neuropathy, for 25 years. “I can’t give more information than ‘You have to take it and see what happens’. And that’s not necessarily attractive to anybody.”

To make things better, we need to find out more about how chemotherapy drugs affect nerve cells. That’s Lloyd’s specialism. Her investigations have brought an almost unknown system in our bodies into the spotlight. They could give doctors a way to predict, treat and even prevent neuropathy from chemo.

The blood, the brain and the nerves

We already knew a lot about how the nerve cells in the brain and spinal cord interact with chemotherapies. Or, more commonly, how they don’t. A special protective system called the blood-brain barrier (BBB) stops most drugs getting to them. That makes brain tumours hard to treat, but it can protect the brain and central nervous system from toxic side effects.

Neuro-toxicities like brain fog or ‘chemo brain’, which Andrea has also experienced, are very difficult problems, but they’d be much worse without the BBB.

Things are a little different in the rest of the body. Exactly how different has long been a mystery. A lot of scientists know a lot of things about the BBB. Lloyd is the rare one who has found something out about its not-so-distant cousin: the blood-nerve barrier. That works similarly to the BBB, stopping substances in the blood getting to sensitive peripheral nerves – it just gets nowhere near as much attention.

“When we first went to the blood-brain barrier meetings and said, ‘We’re trying to understand the blood-nerve barrier,’ the response was mostly, ‘There’s a blood-nerve barrier?’” recalls Lloyd.

What have we found out about chemotherapy-induced peripheral neuropathy?

The main difference, as Lloyd got used to explaining, is that the blood-nerve barrier is a little less secure. This might help explain how chemotherapy drugs can get through and cause peripheral neuropathy.

And it might also make the blood-nerve barrier a promising area to study. While everyone else was looking the other way, Lloyd’s team made a breakthrough. They found a way of opening and closing the blood-nerve barrier, simply by activating a signal in one of the types of cells that support it.

No one’s ever managed to do something similar in the brain.

“There was always this idea that you had to break down these barriers,” explains Lloyd. “But that would be toxic. We’ve shown you that can help things cross it, just for a short time, which makes side effects less likely.”

Blood nerve barrier Open & Closed

In the left image, the blood-nerve barrier is closed, which means drugs (red spots) can't enter peripheral nerves. It’s very different when the barrier is open (right).

On the one side, opening the blood-nerve barrier is an important step towards delivering new types of cancer drugs to cancers that start in or spread through the nervous system. Then, quite apart from cancer, it could help treat nerve cell disorders and brain conditions like Huntington’s disease. It could even be the foundation for opening the blood-brain barrier and improving how we treat brain tumours.

At the same time, understanding how to strengthen or close the blood-nerve barrier could help us stop chemotherapy-induced peripheral neuropathy.

How doctors deal with peripheral neuropathy

Siu knows just how important that could be. Because there aren’t any tests for peripheral neuropathy today, all doctors like her can do is help patients talk about their symptoms.

“You can monitor other issues with scans and blood tests, but you can’t guess what’s happening to the nerve cells in every patient,” explains Siu. “You have to rely on them to tell you how they feel. “We bring it up every visit. And I try not to wait till the symptoms become obvious, because sometimes there’s a delayed effect. If you wait till you have moderate toxicity to do something, it could be severe by the next treatment cycle.”

That discussion goes deeper than symptoms, though. Siu has learned that ‘who’ is just as important as ‘what’, ‘where’ and ‘when’. Our hands and feet can root us in the world and connect us to each other. Some people will choose to continue treatment when their symptoms become severe, but others couldn’t imagine life with long-term peripheral neuropathy.

“I’ve treated a concert pianist, and they’re exquisitely sensitive about their finger movements,” says Siu. “With someone like that, we may mutually decide not to give a life-saving treatment and use an alternative, or to stop an effective drug early, because it could affect the most important part of their bodies. “Sometimes you know the best drug to give, but you can’t give it, or you have to stop, because you’ve decided together that it’s too risky.

“It’s always such a tough decision. You can have a patient who’s experiencing a treatment response, which seems to be deepened with every cycle, and then all of a sudden you have no choice but to stop. You don’t want to make the wrong decision that will change the longevity of the patient. But, at the same time, I have to tell them that the neuropathy is only going to get worse if I continue.

“We can’t reverse time. The only thing we can do is let time heal. It does get better somewhat. But it’s not fast. And it’s not complete.” Teams with the vision and expertise to uncover more about the processes behind issues like chemotherapy-induced peripheral neuropathy – and, ultimately, to help us understand how to prevent and treat it – have until 22 June 2023 to apply for funding of up to £20m ($25m). 

“We have such great knowledge of so many things, and peripheral neuropathy doesn’t seem to be insurmountable,” says Siu. “It’s fitting that it’s a Cancer Grand Challenge, because it can be so difficult for patients, and we have the knowledge in this century to overcome it. If it wasn’t already time, it’s time now.

“We may not have leveraged enough knowledge from biologists like Alison. We don’t talk about the blood-nerve barrier very much. There are probably insights there that we haven’t taken advantage of.”

Better treatments without compromises

Those insights are piling up. In their latest scientific paper, Lloyd’s team covered the ground of decades of studies into the BBB.

“We’ve defined the structure and control of the blood-nerve barrier – all the cell types that are involved, how they interact, how it can be regulated and why it’s a barrier. It took more than 10 years of development, but we’ve got a model that enables you to see how a barrier can be opened and closed.”

From here, scientists can tackle some of the most debilitating side-effects of cancer treatment, making chemotherapy a better option for everyone. We’re ready with the funding they need to make a difference – and the knowledge of why it’s so important.

“You have this kind of love-hate relationship with chemo,” says Andrea. “You acknowledge that it could save your life, but at the same time it can cause you its own set of problems. I understand and respect that that’s why some people don’t want it – they’d much rather protect their quality of life.”

We’re with Andrea, and everyone else like her, whatever treatment decision they make. Our job is helping tip the balance. Beating cancer means making sure as many people as possible can get the best quality treatment while living their lives the way they choose. “If chemotherapy didn’t have these side effects, it would be welcomed by so many more people,” says Andrea. And the more people we can treat, the more time we can give.

Rash

Chemotherapy can alter the immune system in ways that cause rashes and other skin changes. The drugs can also trigger skin changes directly.

Severe rashes can cause painful, intense itching. If a person scratches until their skin bleeds, there is a risk of infection. Moisturizing lotions and over-the-counter anti-itch creams may help.

Breathing problems

Sometimes, chemotherapy can damage the lungs and make it harder to take in enough oxygen. Breathing issues can also result from some types of cancer.

Staying calm, sitting and propping up the upper body with pillows, and practicing pursed lip breathing may help. A doctor may prescribe medication if breathing problems continue.

Call 911Trusted Source, or otherwise contact local emergency services if anyone has:

• breathing problems that start suddenly and do not improve

• a bluish tint to their mouth, nail beds, or skin

• chest pain

• weakness or dizziness

• difficulty speaking

Pain

Some side effects of chemotherapy can cause pain. For example, there may be:

·       pain in the mouth and throat, possibly due to oral sores

·       nerve pain

·       pain at the injection site

·       headaches

Pain can also occur as cancer progresses. The ACSTrusted Source encourages people to contact their cancer care team if they experience headaches or pain at an injection or catheter site.

Pain is a potential side effect of chemotherapy.

The pain caused by chemotherapy is often described as a burning, numb, tingling, or shooting sensation. It tends to occur in the hands and feet.

This is called neuropathic pain. Neuropathic pain is the result of damage to the nerves caused by chemotherapy drugs or, sometimes, the cancer itself.

Other types of pain associated with chemotherapy include:

·       headaches

·       muscle and joint pain

·       stomach aches

Pain caused by chemotherapy should be manageable. Your doctor can prescribe medication to help ease the pain.

It’s important to take pain medication as prescribed. This may involve following a schedule, so you can stay ahead of any potential pain. Don’t wait until your pain is overwhelming to take your pain-relief medication.

Keep in mind that your pain levels may fluctuate throughout your treatment. Many cancer treatment resources recommend keeping a record of when and where you feel pain, what it feels like, and how strong it is.

Speak with your healthcare team about how pain affects your day-to-day activities. They can help you manage any side effects or discomfort you may be experiencing.

Complementary treatments that may ease pain

 The following complementary treatments can be used to reduce the pain caused by cancer and chemotherapy:

acupuncture and acupressure

• biofeedback

• deep breathing

• hypnosis

• massage therapy

• meditation

• physical therapy

• yoga