protocol

The viruses behind cold sores and shingles stay in the body for life and can flare when cancer treatment weakens the immune system. People having intensive leukaemia treatment, a stem cell transplant, or myeloma drugs such as bortezomib are usually given an antiviral tablet, aciclovir or valaciclovir, to prevent this. Most people having ordinary chemotherapy for a solid tumour do not need it.

During cancer treatment you should have a phone number answered day and night. A trained nurse asks set questions about each symptom and grades it green, amber or red. Green means advice for home, one amber a review within 24 hours, and red (or two ambers) being seen in person as soon as possible. A temperature of 37.5 °C or more, or below 36 °C, always means urgent assessment.

Chemotherapy often lowers the red blood cells, causing tiredness and breathlessness. Your team should first look for other causes such as low iron or blood loss. If the treatment is not aimed at cure, injections that stimulate red cell production (ESAs) or a blood transfusion are options; if the aim is cure, ESAs are not used because of their risks.

Some people on intensive chemotherapy, such as for acute leukaemia, are offered an antibiotic tablet while their white cells are lowest,. Guidelines disagree on who should have it: NICE offers it to more adults; children's and Australian guidelines limit it to the highest risk, as it breeds resistant germs. It does not replace calling the team at once with a fever.

Some people feel sick, or are sick, before a chemotherapy session, set off by the hospital or a smell: a learned reaction to sickness in earlier cycles. The best protection is good anti-sickness medicine from the first cycle. If it happens, tell your team: relaxation training helps, and a calming tablet such as lorazepam the night before and on the morning of treatment can be offered.

Sickness from chemotherapy is now largely preventable. The anti-sickness medicines you are given depend on how likely your chemotherapy is to cause sickness: for the strongest regimens that is four medicines before treatment and some for the days after, for the mildest none at all. If you are still sick, tell your team: there is a next step.

People on the most intensive leukaemia treatment, or a stem cell transplant from a donor, are at risk of serious mould infections in the lungs. Most are offered a preventive antifungal medicine, usually posaconazole, while their immunity is lowest. Other cancer treatments usually do not need one. These drugs interact with many medicines, so the pharmacist checks every combination.

Before immunotherapy such as pembrolizumab or nivolumab starts, your team checks your blood count, kidney and liver tests, thyroid and often cortisol and sugar levels, and asks about autoimmune and lung conditions. Some tests are repeated before each dose, because immunotherapy side effects are often found on a blood test before you feel them.

Cancer and its treatment raise the chance of a blood clot in a leg or lung. Most people having treatment as outpatients do not need a blood thinner, but some do: your team can work out your risk with a simple score from your blood count, weight and type of cancer. Everyone should know the signs of a clot: a swollen, painful leg or sudden breathlessness or chest pain.

Rarely, immunotherapy makes the immune system attack blood cells, causing low platelets (easy bruising or bleeding), destruction of red cells (tiredness, breathlessness, yellow skin, dark urine) or low white cells (infections). These are found on blood tests and treated with steroids and other medicines, usually with a haematologist involved.

Some hormone treatments for breast and prostate cancer thin the bones and raise the chance of a fracture. When you start an aromatase inhibitor or treatment that stops the ovaries working, a bone density scan is offered; on prostate hormone therapy your fracture risk may be checked. Exercise, a good diet and not smoking help, and bone-strengthening medicine is offered if the bones are thin.

Women who had radiotherapy to the chest as children, teenagers or young adults, for example for Hodgkin lymphoma, have a much higher chance of breast cancer at a young age. They should be offered yearly breast MRI and mammograms, starting at 25 or 30 or 8 years after the radiotherapy, whichever is later. In England this is arranged through the NHS very high risk screening programme.

Making CAR T cells from your own blood takes several weeks. During that wait many people have a short course of treatment, called bridging, to keep the cancer under control so they are well enough for the CAR T cells. It is given only after the blood cells have been collected, and is chosen so it will not cause infections or organ problems that could delay the infusion.

Tiredness that rest does not fix is one of the commonest effects of cancer and its treatment, for months or years. Your team should ask about it and look for treatable causes such as anaemia, low thyroid, pain, poor sleep, low mood or a medicine. What helps most is exercise suited to you, cognitive behavioural therapy and mindfulness. Modafinil is not recommended, nor methylphenidate routinely.

When a central line is put in, the team follows a checklist: clean hands, a cap, mask, sterile gown and gloves for the person inserting it, a sterile drape over the whole body, and chlorhexidine in alcohol on the skin, left to dry. Someone watches and can stop the procedure if a step is missed. For long treatments such as chemotherapy, a tunnelled line or a port is usually the right kind of line.

A central line (a Hickman, PICC or port) lets germs straight into the blood, so every touch is planned. Hands are cleaned, the connector is scrubbed with antiseptic each time, the dressing is kept clean and dry and changed weekly, and every day someone asks whether the line is still needed. Families caring for a line at home are taught the same steps before they leave hospital.

Immunotherapy can damage the pituitary or adrenal glands so the body stops making cortisol, a hormone needed to survive illness. Anyone on immunotherapy who becomes very unwell should be treated for low cortisol at once while tests are done. Most then need hydrocortisone tablets for life, a steroid emergency card, and to know how to double the dose when ill. Immunotherapy can usually carry on.

Some chemotherapy drugs, such as paclitaxel, docetaxel, oxaliplatin, vincristine and bortezomib, can damage the nerves in the hands and feet, causing tingling, numbness or pain. Tell your team at every visit: the dose can be lowered or delayed before the damage lasts. No medicine is proven to prevent it; cooling or compressing the hands is being tested. Duloxetine can help painful nerve damage.

Pain can last for years after cancer treatment. Tell your team about any pain, especially new pain, which should be checked for cancer coming back. Most long-lasting pain is best managed first with exercise, talking therapies, physiotherapy and non-opioid medicines; acupuncture helps joint pain from aromatase inhibitors. Opioids can be tried with care, because long-term use carries real risks.

C. difficile is a gut germ that can cause bad diarrhoea, often after antibiotics. In children having cancer treatment it is treated with an antibiotic by mouth, chosen by how severe it is. Children with it are kept apart from others to stop it spreading, and probiotics and faecal transplants are not used routinely during treatment.

After CAR T-cell therapy, the immune cells can release a flood of chemical messengers, causing fever, low blood pressure and breathing trouble: cytokine release syndrome. Any fever after CAR T-cell therapy needs the treating centre at once. Teams grade it from 1 to 4 and treat with tocilizumab and, if needed, steroids; infection is treated at the same time because the two look alike.

Medicines that strengthen bone in cancer, such as zoledronic acid and denosumab, can rarely cause a patch of jawbone to break down, usually after a tooth is taken out. Before you start, see a dentist so any problem teeth can be treated first, keep your mouth very clean, and tell your dentist about the medicine. Report any jaw pain, loose teeth or exposed bone in the mouth.

Treatment diarrhoea can turn dangerous quickly, especially with a low blood count. Drink plenty and start loperamide at the first loose stool if your team has told you to. Call the 24-hour line at once if it does not settle within a day, if there are seven or more stools a day, or with fever, blood, vomiting or dizziness. If cancer tablets are the cause and loperamide fails, stop them and ring.

Many people with cancer feel worried, low or overwhelmed, and money, work or caring for others add to it. Clinics often ask you to mark a scale from 0 to 10 for your distress in the past week and tick a list of problems. A score of 4 or more is a signal for the team to talk it through and offer help, such as a psychologist, social worker or chaplain. Screening only helps when someone acts on it.

Drugs that block EGFR, such as cetuximab, panitumumab, amivantamab and EGFR tablets for lung cancer, very often cause an acne-like rash. Starting skin care on day one makes a bad rash much less likely: doxycycline or minocycline for the first weeks, moisturiser, sunscreen, and sometimes a mild steroid cream. Tell your team early if it spreads or hurts: a pause or lower dose may help.

When main treatment ends, you should get a written summary of the treatment you had, side effects to look out for, signs the cancer might be back, who to contact, and the follow-up planned. In England it goes to you and your GP. Trials found the written plan alone did not make people feel better; it works best with a real conversation about who looks after you next.

Exercise is safe for most people during and after cancer treatment and helps with tiredness, fitness, strength and mood. The usual aim is to build up to about 30 minutes of moderate activity such as brisk walking three times a week, plus strength exercise twice a week, starting low. Some people should be checked first, for example with cancer in the bones, heart or lung disease, or nerve damage.

Some antibody-drug conjugates damage the front surface of the eye (the cornea), causing dry, gritty or painful eyes and blurred vision. With belantamab, mirvetuximab and tisotumab, an eye specialist examines you before and during treatment, you use eye drops on a schedule, and no contact lenses. Report any change in your sight at once: the dose can be paused or lowered, and most problems improve.

Immunotherapy can occasionally cause dry, gritty eyes or inflammation inside the eye (uveitis), and rarely of the nerve to the eye. Red or painful eyes, sensitivity to light, floaters, blurred or double vision, or drooping eyelids should be reported so an eye specialist can see you. Most is treated with eye drops and immunotherapy usually continues; sudden loss of vision is an emergency.

Some cancer treatments can make it harder or impossible to have children later. Before treatment, your team should discuss this and, if you want, refer you quickly to a fertility specialist. Freezing sperm, eggs, embryos or ovarian tissue are the established options; an injection to rest the ovaries during chemotherapy can be added for some women with breast cancer but does not replace freezing.

Some cancer treatments can stop a child having children of their own later. Before treatment, the team should talk with the family about this risk and refer them to a fertility specialist if they want, or are unsure. Teenagers who have started puberty can bank sperm or eggs; for younger girls ovarian tissue can be frozen, and for younger boys testicular tissue freezing is still experimental.

A child having cancer treatment who gets a fever, or seems unwell, needs to be seen in hospital straight away, using the team's number. There blood cultures are taken from every channel of the central line and one strong antibiotic is started through a drip. Children at low risk may finish at home or by mouth, and antibiotics can often stop after two days if cultures stay clear.

After an operation to cure bowel cancer, you will usually have regular blood tests (CEA) and CT scans for the first 3 years, and a colonoscopy about a year after surgery. The aim is to find a return early enough to operate again. How often you are tested differs between countries, and the large trials found that testing more often does not, on average, help people live longer.

After treatment for early breast cancer, the main test is a yearly mammogram, usually for 5 years and then through the national screening programme. Routine scans and blood tests are not recommended when you are well, because the evidence does not show they help. You should get a written plan saying who to contact and which symptoms to report.

Strict lists of banned foods (the 'neutropenic diet') do not prevent infections in trials, in children or adults, and they make eating harder. What matters is ordinary food safety: clean hands and surfaces, raw meat kept apart, fruit and vegetables washed, meat and eggs cooked through, and no unpasteurised milk or cheese, mouldy food or unsafe water. Transplant teams may differ.

Some chemotherapy lowers the white cells that fight infection so much that a fever becomes dangerous. If your treatment carries a high risk of this, or you had an infection with low white cells on an earlier cycle, you may be given injections of a growth factor (G-CSF) after each cycle to help your white cells recover faster.

If you are 65 or over and about to start chemotherapy, targeted therapy or immunotherapy, your team should check more than the cancer: how well you move and manage day to day, memory, mood, other illnesses, medicines, nutrition and who supports you. The results help choose a treatment you can tolerate and find problems that can be fixed, such as falls, poor nutrition or too many tablets.

After a donor transplant, everyone takes medicines to stop the donor's immune cells attacking their body (graft-versus-host disease). The combination depends on the donor, the pre-transplant treatment and whether the cells came from blood or marrow. Newer combinations reduce graft-versus-host disease; in the main trial they did not lengthen life, and each has its own side effects.

Clean hands are the single most important way to stop infections spreading to someone whose immunity is low. Staff clean their hands at five set moments around every patient, usually with alcohol rub, and with soap and water when hands are dirty or when there is diarrhoea such as C. difficile. Patients, families and visitors should clean their hands too, and ask staff to if they have not.

Capecitabine, liposomal doxorubicin and tablets such as sorafenib and regorafenib can make the palms and soles red, sore, peeling or blistered. From the start, avoid rubbing, heat and long soaks, wear well-fitting shoes and moisturise daily; with sorafenib, a 10 per cent urea cream from day one helps. If hands or feet become painful or limit what you do, stop capecitabine and call your team.

Cisplatin can permanently damage a child's hearing. For many children whose cancer has not spread, a drug called sodium thiosulfate, given as a short drip six hours after each dose of cisplatin, roughly halves the chance of hearing loss. Hearing is tested during treatment and for years after, and any loss is referred to a hearing specialist.

Some cancer treatments, such as anthracyclines (doxorubicin, epirubicin) and trastuzumab, can weaken the heart. Before they start, your team should check your heart risk, usually with blood pressure, blood tests, an ECG and a heart scan, repeated during treatment; a fall in heart function does not always mean stopping. Afterwards, tell any doctor about new breathlessness, swelling or chest pain.

Hepatitis B can sleep in the liver for years and wake up when cancer treatment weakens the immune system, sometimes damaging the liver badly. A blood test before treatment finds people at risk. Those who have it, or have had it and get high-risk treatment such as rituximab or a stem cell transplant, take an antiviral tablet during and for at least a year after treatment, or are checked closely.

Hormone treatments for breast and prostate cancer often cause hot flushes, sometimes for years. After breast cancer, hormone replacement therapy is usually ruled out. Options include cognitive behavioural therapy, hypnosis, venlafaxine, some SSRIs (not with tamoxifen), gabapentin and, in a large trial, elinzanetant. For men, NICE suggests medroxyprogesterone first. Herbal remedies are not advised.

Some cancers raise the calcium level in the blood. It causes thirst, passing a lot of urine, constipation, sickness, tiredness and confusion, and can be dangerous. A blood test confirms it. Treatment is a drip of fluid, then a medicine that stops calcium leaving the bones (a bisphosphonate such as zoledronic acid, or denosumab), alongside treatment of the cancer itself.

In some leukaemias the white cell count is so high that the blood thickens and blocks small vessels in the lungs, brain and kidneys. This leukostasis is an emergency. The cells are brought down quickly with hydroxyurea and then chemotherapy; sometimes a machine filters them out. Blood transfusions are avoided unless really needed, because they thicken the blood further.

Low sodium in the blood is common in cancer, especially small-cell lung cancer, and can also come from some cancer drugs, sickness or diarrhoea. Vomiting, confusion, drowsiness or a fit with low sodium is an emergency: hospital teams give a strong salt drip in small doses and check often, because raising sodium too fast can damage the brain. Then the cause is treated.

In the weeks after CAR T-cell therapy, some people become confused, struggle to find words or write, become very sleepy, or rarely have seizures. This is ICANS. Nurses check a short test of orientation, naming, writing and counting (the ICE score). Steroids such as dexamethasone treat it, and most people recover. A carer who notices confusion or odd speech should call the centre at once.

Rarely after CAR T-cell therapy the immune system stays switched on after cytokine release syndrome has settled, and starts damaging the blood, liver and clotting (IEC-HS). It shows as very high ferritin, falling blood counts, low clotting proteins and liver test changes. It is treated with anakinra and steroids, adding other drugs if it worsens, while infection and relapse are ruled out.

Immunotherapy can inflame the liver, usually without symptoms, so liver blood tests are checked before every dose. If the tests rise, immunotherapy is paused and steroids are given; severe cases mean stopping immunotherapy. Yellow skin or eyes, dark urine or pale stools need a call to your cancer team the same day.

Immunotherapy drugs such as pembrolizumab, nivolumab and ipilimumab can make the immune system attack the bowel, causing diarrhoea, tummy pain or blood in the stool. Ring your cancer team's 24-hour line as soon as diarrhoea starts. Mild cases are watched; anything more is treated with steroids, and if steroids do not work within a few days, with a drip such as infliximab.

Rarely, immunotherapy inflames the heart muscle. It usually starts in the first three months and can be fatal, so new chest pain, breathlessness, palpitations, fainting, or new muscle weakness, drooping eyelids or double vision need urgent assessment. It is treated in hospital with very high-dose steroids straight away.

Immunotherapy can inflame the lungs. A new cough, breathlessness or chest pain during or after immunotherapy should be reported to your cancer team the same day. A CT scan of the chest confirms it, and steroids are the main treatment; severe cases need hospital and steroids through a drip.

Rash and itching are among the commonest and earliest side effects of immunotherapy, usually a few weeks in, and most are mild. Blisters, peeling skin, sore skin, or sores in the mouth, eyes or genitals are different: they can be serious and need the cancer team the same day.

Rarely, immunotherapy destroys the cells that make insulin. Blood sugar can rise within days and become dangerous (diabetic ketoacidosis). Thirst, passing a lot of urine, being sick or feeling drowsy need urgent help. It is treated with insulin, which is almost always lifelong, and not with steroids.

Infections are the commonest serious problem in the months after CAR T-cell therapy. You are first tested for hepatitis B, HIV and other viruses. Afterwards most centres give tablets against shingles, cold sores and a type of pneumonia for at least six months, check antibody levels, and may give antibody infusions if they are low and infections recur. Any fever needs a call to the team at once.

Trouble sleeping is very common during and after cancer treatment, and it often lasts. Your team should ask about your sleep at every stage. The treatment with the best evidence is cognitive behavioural therapy for insomnia (CBT-I), face to face or online. Sleeping tablets can help for a short time but are not recommended for long-term use; exercise can help too.

Irinotecan can cause two kinds of diarrhoea. The first comes during or soon after the drip, with sweating, watery eyes and cramps; an atropine injection stops it. The second starts a day or more later and can be serious: take 4 mg of loperamide at the first loose stool, then 2 mg every 2 hours, and call your team if it is not controlled in 24 hours, or with blood, fever or faintness.

Immunotherapy can cause joint pain and swelling, stiffness in the shoulders and hips, a dry mouth and eyes, or, rarely, muscle inflammation. Mild cases are treated with painkillers or anti-inflammatories; others need steroids and a rheumatologist, and immunotherapy often continues. Muscle weakness, trouble swallowing or breathlessness is urgent, because muscle inflammation can affect the heart.

Immunotherapy can occasionally inflame the kidneys. It usually causes no symptoms and is found when the creatinine on a routine blood test rises. Other causes are looked for first, some medicines may be stopped, immunotherapy is paused, and steroids are given if the immunotherapy is the cause. Some people can later restart.