The Red-Flag Symptom Card — Every Family Should Have
When immunotherapy causes an immune-related side effect, family members usually notice it first — a change in bathroom habits, breathlessness on the stairs, or sudden confusion. NCCN and ASCO guidance on immune-related adverse events (irAEs) is built on one idea: early reporting keeps most reactions manageable, and delay is what lets a mild reaction become a severe one. This one-page card sorts every common symptom into three tiers — call today, call now, or note for the next visit — so your family always knows which is which.
Medically reviewed by Dr. T. Raghavender Reddy, Medical Oncologist, MBBS · DM (Medical Oncology) · MD (Radiation Oncology) · Last reviewed August 2026
- Built for the family, not just the patient — spouses, adult children and regular visitors are often the first to spot a change.
- Three tiers, not one long list — call today, call now, or note it — so no symptom gets lost in worry.
- Print it, pin it, keep it in the hospital bag — a card only helps if it's somewhere you'll actually see it at 2 a.m.
- Every decision still goes through your oncology team — this card tells you when to call, never what to do instead of calling.
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The Three-Tier Red-Flag Symptom Card
Every symptom that can appear during immunotherapy fits into one of three tiers: call today, call now (emergency), or note it for the next visit. Printing this table and keeping it where your family will see it is the single most useful thing a caretaker can do during treatment.
| Tier | What it looks like | What to do |
|---|---|---|
| Call Today | New or worsening but mild — loose motions, rash, fatigue, low fever, joint aches | Call the oncology team the same day. Don't wait for the next appointment. |
| Call Now — Emergency | Chest pain, severe breathlessness, confusion, fainting, very high fever, severe abdominal pain, adrenal crisis signs | Call the helpline while heading to the nearest ER. Go now. |
| Note for Next Visit | Mild, stable, not worsening — slight tiredness, a small dry patch, one loose stool that resolves | Write the date and details on the card. Mention it at the next visit. |
Which Symptoms Need a Call Today?
Call your oncology team the same day for any new or worsening symptom that is mild but persistent — loose motions that don't settle within a day, a new skin rash, unusual tiredness that doesn't improve with rest, joint aches, or a low-grade fever. None of these are emergencies on their own, but same-day reporting is what keeps a mild immune-related reaction from quietly turning into a severe one.
- New or increased loose motions that haven't settled within 24 hours
- A new rash, itching, or skin change that's spreading
- Fatigue that's clearly worse than your loved one's usual tiredness
- A low-grade fever, or joint and muscle aches that are new
- Any symptom your family isn't sure about — same-day reporting costs nothing; waiting can
Note the date it started and whether it's improving or worsening before you call — that detail helps the care team grade it correctly on the first conversation.
Which Symptoms Need Emergency Care?
Call the CION helpline while heading to the nearest emergency room for chest pain, severe breathlessness, confusion, fainting, very high fever, severe abdominal pain, or signs of an adrenal crisis such as extreme weakness with low blood pressure. These can signal a severe immune reaction — myocarditis, pneumonitis, colitis, or adrenal insufficiency — where minutes matter and there is no safe home-management step.
Go to the ER now — call while you're moving, not instead of moving:
- Chest pain, palpitations, or fainting
- Severe breathlessness or sudden wheezing
- New confusion, severe headache, or difficulty waking up
- Very high fever, or severe abdominal pain with blood in the stool
- Extreme weakness with low blood pressure — a possible adrenal crisis
These symptoms are explained in more clinical detail on our companion pages — Chest Pain on Immunotherapy: When It's an Emergency, Collapse or Confusion on Immunotherapy, and Recognising an Adrenal Crisis — worth reading once and bookmarking, not during an emergency itself.
Which Symptoms Can Wait Until the Next Visit?
Mild, stable symptoms that aren't getting worse — slight fatigue, a small dry patch of skin, occasional mild nausea, or one loose stool that resolves on its own — can usually be noted on the card and raised at the next scheduled visit. "Can wait" never means "ignore it": write the date and what happened, because a pattern your team can't see in one visit often becomes obvious across several notes on the card.
- Write the date, the symptom, and whether it's the same, better, or worse than yesterday
- Keep noting it even if it seems to go away — the pattern matters more than any single entry
- Bring the card itself to the appointment rather than trying to remember from memory
If a "can wait" symptom is still present at the next visit, or is joined by a new one, move it up a tier and call — the tiers are a starting point for judgement, not a rulebook that overrides your instincts.
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How to Build and Use This Card in 5 Steps
A red-flag card only works if it's actually made and actually used — not just read once and forgotten. These five steps take under fifteen minutes and turn the three tiers above into something your family can act on under pressure.
- 1
List the three tiers
Write three headings on one page — Call Today, Call Now (Emergency), Note for Next Visit — leaving space under each to jot symptoms as they appear.
- 2
Fill in your own baseline
Record normal energy levels, normal stool pattern, and normal weight, so "worse than usual" has a clear starting point instead of being a guess.
- 3
Add the helpline and care-team details
Write the CION helpline number in large print, plus the treating oncologist's name and centre, so the card works even when you're panicking.
- 4
Put it where it will actually be seen
Keep the card on the fridge door, inside the hospital bag, and saved as a photo on every family member's phone — not filed away in a folder.
- 5
Review and update it every cycle
Revisit the card after each infusion cycle — new side effects can appear even months into treatment, so the card should grow with the journey.
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Which symptoms need a call today?
Call your oncology team the same day for any new or worsening symptom that is mild but persistent — loose motions that don't settle within a day, a new skin rash, unusual tiredness that doesn't improve with rest, joint aches, or a low-grade fever. None of these are emergencies on their own, but same-day reporting is what keeps a mild immune-related reaction from quietly turning into a severe one. Write down when it started and whether it's improving before you call.
Which symptoms need emergency care right now?
Call the CION helpline while heading to the nearest emergency room for chest pain, severe breathlessness, confusion, fainting, very high fever, severe abdominal pain, or signs of an adrenal crisis such as extreme weakness with low blood pressure. These can signal a severe immune reaction — myocarditis, pneumonitis, colitis, or adrenal insufficiency — where minutes matter and there is no safe home-management step. Go straight to emergency care; call while you're moving, not instead of moving.
Which symptoms can wait until the next appointment?
Mild, stable symptoms that aren't getting worse — slight fatigue, a small dry patch of skin, occasional mild nausea, or one loose stool that resolves on its own — can usually be noted on the card and raised at the next scheduled visit. "Can wait" never means "ignore it": write the date and what happened, because a pattern your team can't see in one visit often becomes obvious across several notes on the card.
Who should keep the red-flag symptom card — the patient or the caretaker?
Ideally both, but the caretaker's copy matters most. Patients on immunotherapy are often the last to notice their own confusion, breathlessness, or personality change — irAEs affecting the brain, lungs, or hormones can blunt the very judgement needed to recognise them. A spouse, adult child, or regular visitor who checks the card and watches for changes is often the actual early-warning system, which is exactly why this card is built for the family, not filed away with the patient's paperwork.
Should this card be shown to other doctors, like a family GP or an ER team?
Yes, always. Any doctor treating your loved one for anything — a fever, an injury, a stomach bug — needs to know they're on immunotherapy, because standard treatments for common problems can be the wrong choice for an immune-related reaction. Hand over the card, say the words "on immunotherapy" clearly, and give the oncology team's contact details so the two teams can coordinate rather than treat the symptom in isolation.
How often should we update the symptom card during treatment?
Review it after every infusion cycle, and sooner if anything new comes up. Immune-related side effects don't follow a fixed schedule — some appear within days of the first dose, others show up months after treatment has ended. Treat the card as a living document: cross off symptoms that resolved, add new ones as they're reported to your care team, and keep the baseline section current as your loved one's normal changes through treatment.