A glioblastoma diagnosis in India: a survivor's journey

August 2023 — the first signs

It began with numbness in my left fingertips that faded after a few weeks. Then came severe headaches, and slowly, a very subtle reduction in my left-hand function — typing, fastening my bra strap. It was a really busy time at work, and I just ascribed it all to stress for a few months.

October 2023 — the scan

Eventually, when one day I started struggling to hold a fork straight while eating, I knew matters were deteriorating fast, and I finally saw a neurologist on the 30th of October. On examination he could see less than a 5% difference between my left and right sides — but he ordered an MRI with contrast anyway, just to be sure. It showed a tumour on my right parietal lobe. They suspected a glioma straight away, likely high-grade, from the imaging.

November 2023 — surgery

We immediately went to see a neurosurgeon, who agreed with the preliminary diagnosis and recommended immediate surgery with no separate biopsy. We also ran a full eye exam in parallel to check my vision hadn't been affected. On the 4th of November I had a five-hour awake craniotomy, and a large part of the tumour was removed. Three paraffin blocks of tumour tissue were stored for further testing.

Pathology confirmed a Grade 4 glioblastoma, IDH-wildtype. Methylation profiling came back MGMT-positive (methylated), which meant I would benefit more from the temozolomide chemotherapy.

One thing I would do differently: I should have had a post-surgical MRI within 72 hours of the operation. It was not suggested to me, and that early scan is an important baseline to separate the true picture from tumour remnants versus post-surgical changes like inflammation that might set in thereafter.

In parallel — molecular testing

We sent the stored tumour blocks to one Indian lab (MedGenome) and one international lab for NGS testing, to see whether my tumour carried any specific mutations that might respond to targeted therapies. Results took about four weeks. Mine came back with no actionable mutations, and the immune markers suggested an "immunologically cold" tumour so it was less likely to respond to standard immunotherapy drugs.

From late November 2023 — standard treatment

Within about four weeks of surgery, I started on standard of care (SOC): six weeks of radiation with low-dose temozolomide alongside it, followed by adjuvant chemotherapy. Under close oversight from my oncologist, I was recommended 13 cycles of chemotherapy over 15 months rather than the usual six, and for three of those cycles I was recommended to add lomustine to the temozolomide, based on a small German study suggesting a survival benefit in methylated tumours.

From the start of radiation I moved to a gluten-free, dairy-free, sugar-free diet under a senior nutritionist experienced with GBM patients. My energy stayed high — I was walking close to 10,000 steps a day even through radiation.

2024 — options beyond standard care

Along with SOC, my oncologist mentioned some international options if I could find the resources, since some are exceptionally expensive. One was Optune Gio, a wearable device approved in the US for over a decade and now available across parts of Europe. I started it in May 2024 and still use it — it needs at least 18 hours a day to show positive results, and you have to keep shaving your head every 3–4 days so the device stays in close contact with your skin. It's hard to adjust to at first, but the survival benefit is clear and the side-effects are minimal, so I decided it was worth all the effort.

I also began an experimental personalised peptide vaccine from CeGaT/CeCaVa in Germany, which needed my tumour block and blood samples. I started in September 2024 and continue with follow-on doses, as it's showing a positive immune response. Both options meant significant international travel. With my savings and my family's support, I was fortunate to be able to access these treatments.