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🔄 When GBM Comes Back
Understanding recurrence and your options
The Reality
Almost all GBMs recur. This is devastating news, but it's important to know:
- Recurrence is expected — not a failure
- There ARE treatment options
- Some people live years after recurrence
- Clinical trials often focus on recurrent GBM
📊 When Does It Happen?
| Timeframe |
% of Patients |
| Within 6-9 months |
~30% |
| Within 1 year |
~50% |
| Within 2 years |
~80% |
| Beyond 2 years |
~20% still stable |
🔍 Signs of Recurrence
Symptoms That May Indicate Recurrence
- Return of original symptoms
- New or worsening headaches
- New neurological deficits (weakness, speech changes)
- Seizures (new or different pattern)
- Cognitive decline
- Personality or behavior changes
Note: These can also be treatment effects. MRI confirms diagnosis.
Pseudoprogression: MRI can look worse 1-3 months after radiation even though tumor isn't growing. This is treatment effect, not recurrence. Your doctor should consider this possibility.
🏥 Treatment Options at Recurrence
1. Surgery (Re-resection)
If: Tumor is accessible and patient is strong enough
- Can provide symptom relief
- Reduces tumor burden
- May allow more treatment
- Not always possible (location, spread)
2. Re-irradiation
Options:
- Stereotactic radiosurgery (SRS) — focused, high-dose
- Fractionated stereotactic — smaller doses over days
- Lower total dose than initial radiation
- Risk of radiation necrosis
3. Bevacizumab (Avastin)
Most commonly used at recurrence
- Anti-angiogenic (blocks blood vessel growth)
- FDA approved for recurrent GBM
- Improves symptoms and quality of life
- Does NOT extend overall survival in studies
- Can reduce steroid need
4. Lomustine (CCNU)
- Oral chemotherapy
- Given every 6 weeks
- Sometimes combined with bevacizumab
- Bone marrow suppression is main side effect
5. Tumor Treating Fields (TTFields)
If not used initially:
- FDA approved for recurrent GBM
- Can be combined with other treatments
- Wearable device, minimal side effects
6. Clinical Trials
Often the BEST option at recurrence
- Access to newest treatments
- Many trials specifically for recurrent GBM
- Immunotherapy trials
- CAR-T cell therapy
- Viral therapies
💊 Repurposed Drugs at Recurrence
Many patients add repurposed drugs at this stage:
| Drug |
Original Use |
Evidence |
| Mebendazole |
Antiparasitic |
Phase 1 completed |
| Disulfiram + Copper |
Alcoholism |
Trials ongoing |
| Metformin |
Diabetes |
Mixed results |
| Chloroquine |
Malaria |
Some evidence |
| Ivermectin |
Antiparasitic |
Preclinical only |
See our Protocol page for dosages and details.
🤔 Questions to Ask at Recurrence
- Is surgery an option?
- What clinical trials am I eligible for?
- Should I try bevacizumab?
- Is re-irradiation possible?
- What repurposed drugs could we add?
- Should I get a second opinion?
- What are the goals of treatment now? (Cure? Control? Comfort?)
- What is the expected timeline?
- Should we discuss palliative care involvement?
🌟 Don't Give Up
Reasons for Hope
- Some patients live years after recurrence
- New treatments are emerging constantly
- Immunotherapy may work better in recurrent disease
- Each month, new trials open
- Quality of life can be maintained
Recurrence is devastating. But it's not the end. Many families find meaning and joy in the time that remains — however long that is.