Caretaker guide
Red flags at home during chemotherapy
Three levels. Some symptoms mean the nearest emergency department immediately, day or night. Some mean ringing the hospital the same day. Some can wait for the next appointment if written down. Knowing which is which stops families both panicking over nothing and waiting at home through a real emergency.
On this page
The short answer
Which symptoms at home need a hospital during chemotherapy?
Three levels. Some symptoms mean the nearest emergency department immediately, day or night. Some mean ringing the hospital the same day. And some can wait for the next appointment, as long as they are written down and reported. Knowing which is which is what stops families both panicking over nothing and waiting at home through a real emergency.
The difficulty is that the dangerous symptoms often look ordinary. A slight fever, feeling unusually tired, not wanting to eat. Those are the nights when families decide to wait until morning, and those are the nights that go wrong. This page is designed to be printed and put on the fridge.
Fever is always the top level
A temperature at or above the threshold your team gave you means the emergency department at once. Do not give paracetamol to bring it down first, and do not wait for morning.
When in doubt, go up a level
If you cannot decide between ringing and going in, go in. If you cannot decide between waiting and ringing, ring. Nobody is ever blamed for checking.
Know the route before you need it
Which hospital, which entrance, who drives, and where the treatment summary is kept. Decide it once in daylight and write it on the sheet.
Ask your team for your own fever threshold and write it at the top of this list.Level one
Go to the nearest emergency department immediately
A temperature at or above your team's threshold · shivering uncontrollably, even with a normal reading · breathlessness, or chest pain · confusion, drowsiness or being hard to rouse · a fit · bleeding that will not stop, vomiting blood, or black tarry stools · no urine since the morning · nothing staying down · severe stomach pain or a hard swollen stomach · pain, swelling or warmth in one calf · redness, pain or discharge around a port or line · a fall with a head injury · sudden weakness of the face, arm or leg, or difficulty speaking. Do not give paracetamol to bring a temperature down first.
Not sure whether this applies to you?
Ask an oncologistLevel two
Ring the hospital the same day
- Vomiting or diarrhoea that is not settling
- Several episodes, or continuing despite the prescribed medicines. Dehydration builds quickly on treatment; if nothing at all is staying down or there is no urine, that becomes level one.
- A sore mouth that is stopping eating or drinking
- Mouth sores are common, and the point at which they stop fluids going in is the point to ring. Ask what can be prescribed for the pain and the infection risk.
- New or spreading rash, or skin that is peeling or blistering
- Some drug reactions start in the skin. A rash that is spreading, blistering, or involves the mouth or eyes needs the team the same day.
- New bruising or small red spots on the skin
- May reflect a low platelet count. Ring the same day; if there is also bleeding that will not stop, it moves to level one.
- Numbness, tingling or weakness getting worse
- In the hands or feet, particularly if it is affecting buttons, writing or walking. This is reported as it develops rather than at the end of the course.
- Pain that is not controlled by the prescribed medicines
- Anywhere, and especially new pain in one fixed spot. Uncontrolled pain is treatable and should not be endured until the next appointment.
Level three
Write down and report at the next appointment
Not urgent, but not to be forgotten either.
Tiredness that is predictable within the cycle
Worst on the same days each cycle and improving after. Report it, and report if it is steadily worsening across cycles rather than following the usual pattern.
Note down
- Which days of the cycle are worst
- Whether it is worse than last cycle
Mild nausea controlled by the medicines
If the prescribed tablets are keeping it manageable, note how much you needed and when. If they are not working, that is level two.
Constipation, taste changes and poor appetite
Common, manageable, and frequently under-reported. Write down how long it lasted and what helped, so the team can adjust the supportive medicines.
Also note
- Weight each week
- What food is actually being eaten
Hair, skin and nail changes
Expected with many drugs. Report them, and move to level two if skin is blistering or peeling, or a nail bed becomes red, painful or discharging.
Low mood, poor sleep and worry
Worth raising at every appointment. If there are thoughts of self-harm, or the person has stopped eating or taking medicines, that is the same day rather than the next visit.
Being straight with you
What this page cannot tell you
It cannot replace the list your own team gave you. Different drugs carry different specific warnings, and some regimens add symptoms to level one that are not on this general page. Put your team's list beside this one and follow theirs where they differ.
It also does not give you a fever number. The threshold is set by your treating team and can differ between patients. Ask for yours, in writing, and put it at the top of this sheet.
Nobody is blamed for checking
Families hesitate at night because they do not want to trouble anybody. An emergency team seeing a chemotherapy patient who turns out to be fine considers that a good outcome. The harm is always in the waiting.
Two people should know this list
The main attendant will not be there every night. Walk one other household member through all three levels and show them where the numbers and the treatment summary are kept.
Keep the go-bag ready
The treatment summary, the medicine list, the readings notebook, a phone charger and some money, together by the door. Assembling them at two in the morning costs time you do not have.
What to do next
Print this page, write your fever threshold and both hospital numbers at the top, and put the name of the night-time hospital beside them. Walk a second person through it. Pack the go-bag and leave it by the door.
Leave a number, we will call you
One field. No form to fill in, and no charge for the call.
Commonly believed
Four decisions that go wrong at night
A fever on chemotherapy is level one regardless of how slight it looks. Infection with low white cells moves fast and is very treatable when caught early. Go the same night.
Nobody on an oncology or emergency team thinks a chemotherapy patient checking in is a bother. When you cannot decide between two levels, go up one. The harm is always in the waiting.
Some sickness is expected. Sickness that is not settling with the medicines is level two, and nothing staying down or no urine since the morning is level one.
Worsening numbness is reported as it develops, because teams can act on it while treatment is still running. Waiting until the end removes that option.
Questions we are asked
Common questions about warning signs at home
When should we go straight to the emergency department?
For any level-one symptom, including a fever at or above your team's threshold, uncontrollable shivering, breathlessness, confusion, bleeding that will not stop, or no urine since the morning. Go at once, day or night.
What if we cannot decide how serious it is?
Go up a level. Between ringing and going in, go in. Between waiting and ringing, ring. Nobody is ever blamed for checking.
Can we give paracetamol and wait?
Not for a fever. It hides the sign the emergency team needs. Take the temperature, and if it is at or above the threshold, go in without giving anything first.
Which hospital should we go to at night?
The nearest emergency department, unless your team has named a specific one. Decide it in daylight, write it on this sheet, and know who will drive.
What should we take with us?
The treatment summary, the medicine list, any temperature readings with times, a phone charger and some money. Keep them together by the door so nobody has to search.
Is diarrhoea an emergency?
Diarrhoea that is not settling is a same-day phone call. With a fever, no urine, nothing staying down or feeling faint, it becomes level one and needs the emergency department.
Does our team's list replace this one?
Use both, and follow your team's where they differ. Some drugs carry specific warnings that are not on a general page, and your own team knows your regimen.
Who else in the house should know this?
At least one person besides the main attendant. Walk them through all three levels and show them where the numbers, summary and go-bag are kept.
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Sources
- Macmillan Cancer Support — Chemotherapy and infection risk
- National Cancer Institute — Chemotherapy and You: Support for People With Cancer
- Cancer Research UK — Caring for someone with cancer
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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