Steroids: necessary, and to be minimized
Dexamethasone reduces swelling around the tumor and can relieve headache, weakness or confusion within a day. It also causes insomnia, mood swings, high blood sugar, muscle wasting, weight gain, infections and, over time, bone loss. The rule is the lowest dose that controls symptoms, tapered slowly and never stopped abruptly. Keep a written log of the dose and symptoms. High doses suppress immune responses, which matters if a vaccine or immunotherapy is planned; most programs require a low, stable dose first.
- 1Swelling controlledDexamethasone shrinks the swelling around the tumor within a day or two.
- 2Taper in stepsThe dose is reduced gradually; each step is held for days before the next.
- 3Lowest effective doseSymptoms, not the calendar, decide where the taper stops. Never stop abruptly.
Schematic. High doses suppress the immune response and matter if a vaccine is planned.
Seizures
About half of patients have a seizure at some point. Levetiracetam is the usual first choice because it does not interact with chemotherapy. Take it at the same times every day; missed doses are the commonest cause of breakthrough seizures. Learn what the patient's seizures look like and what to do: time it, keep the person safe, do not restrain, call for help if it lasts more than five minutes or repeats. Driving is not allowed after a seizure in most countries for a set period; ask the team and follow local law.
Fatigue, cognition and mood
Radiotherapy fatigue builds through the six weeks and often peaks two to four weeks after it ends, then improves over months. Short daily walks help more than rest alone. Slowed thinking, word-finding difficulty and memory lapses are common and partly reversible; write things down, use one calendar, and reduce decisions per day. Depression and anxiety are frequent and treatable; ask for psychological support early rather than late. Occupational therapy and speech therapy help with specific deficits.
Eating, drinking and infection
Temozolomide causes nausea that anti-emetics taken before the dose usually prevent. Blood counts fall, so fever during chemotherapy is an emergency: call the team the same day. Eat normally with enough protein; no diet has been shown to treat glioblastoma, and restrictive diets during chemotherapy do harm. Alcohol is best avoided while on anti-seizure medication.
| What you notice | What to do | Who to call |
|---|---|---|
| New or worse headache, vomiting, drowsiness | Do not wait for the next appointment | Neuro-oncology team the same day; emergency if rapid |
| Seizure lasting over 5 minutes or repeating | Keep safe, time it, do not restrain | Emergency services |
| Fever during chemotherapy | Treat as urgent: blood counts may be low | Oncology team the same day |
| Mood change, insomnia, agitation on steroids | Log the dose and symptoms | Team at the next contact; sooner if severe |
| Weakness, word-finding trouble, confusion | Note when it started; it may be swelling | Team the same day |
Organizing care
- Appoint one family member as the record keeper: diagnosis documents, medication list with doses and times, scan dates, questions for the next visit.
- Keep a single folder, physical or digital, with every report and image, so second opinions and programs can be approached without delay.
- Agree in advance who makes decisions if the patient cannot, and write it down.
- Ask about the caregiver's own health: sleep, respite, and support groups. Caregivers who collapse cannot help.
The follow-up schedule
An MRI is done about four weeks after chemoradiation, then every two to three months during maintenance temozolomide, then every three to four months. Scans in the first three months may show pseudoprogression; the team will often repeat a scan before acting. Blood tests precede each temozolomide cycle. Keep the images on disc each time. If you are in an added program, ask how its monitoring fits with the home schedule so that scans are not duplicated or missed.
If you are treated abroad, the coordinator is reachable 24 hours a day during the stay, and your home doctors receive every report; details are in the practical matters section.
Scan timing varies by center; scans in the first three months may show treatment effect rather than tumor.
Questions families ask
Can the patient fly during treatment?
Usually yes once the wound has healed and symptoms are stable, with the team's agreement, a steroid plan and medication in hand luggage. Avoid flying in the week after surgery and when seizures are uncontrolled.
Should the patient keep working?
Many patients work part-time during maintenance temozolomide. Radiotherapy weeks are hard. Decide with the employer and the team; fatigue and cognition, not the diagnosis, determine what is possible.
Is there a diet or supplement that helps?
No diet or supplement has been shown to improve survival in glioblastoma. Eat well, keep protein up, and tell the team about any supplement, because some interfere with chemotherapy or anti-seizure drugs.
Related guides
- Standard treatment for glioblastoma explained: surgery, radiotherapy, temozolomide and TTFields
- Recurrent glioblastoma: the options after standard treatment
- What glioblastoma treatment abroad costs, and what the quote should include
Sources
- American Brain Tumor Association: caregiver resources abta.org
- National Brain Tumor Society: Let's talk about glioblastoma braintumor.org
- NCCN Guidelines for Patients: Brain Cancer, Gliomas (2026) nccn.org
Considering treatment in China?
Send the patient's records for a remote review. A coordinator confirms receipt within one business day; the multidisciplinary team's report and a written estimate follow in about a week, before any decision or payment.