r/glioblastoma

After completing a craniotomy and standard-of-care treatment, are there examples of patients returning to cognitively demanding jobs that require high levels of critical thinking? If so, how common is it for them to function at a high level without triggering seizures, particularly in mentally stimulating or high-intensity environments?

My mom (56) got diagnosed with grade 4 GBM in March, unmethylated. Has anyone added any immunotherapy drug or Dendritic cell therapy with their first line of treatment? My mom had currently started her 45 day cycle of RT+TMZ.

We are based out of India. We are two siblings, I (29) am in academics (urban planner) and my younger sibling (26) is a doctor (OBGYN). Both of us are very research heavy in our work and has dived into on-going trials / TTF / Vaccines around the world pretty much like any other caregivers. In our country we do not have many on-going trials except for TMH (which my mom doesn’t qualify for) but there are many ongoing studies in private hospitals here which offers individual therapy/vaccines such as Dendritic Cell Therapy.

Current status of our mom: she recovered quickly from the resection surgery. We bought her home in 3 days of the operation and she could walk, bathe herself, talk, play the usual games on her phone, within 3 days of the surgery. 🧿🧿🧿 She is on her 7th day of radiation and she is feeling a bit weak but is still continuing her routine. 🧿🧿🧿The only problem she still has is her missing vocabulary. She cannot remember colours or what she has for her last meal.

My sister and I because of our mom’s unmethylated result of the biopsy and her current physical and medical status are pushing the doctors to give us a heads up for either of the above stated treatments. Till now we have met top oncologist in our country and all of them have asked us not to integrate such treatments.

Has anyone been through something similar? Is it wise to against their doctors? Since we are coming from a country where government is not interested in medical advancement and our best option is to go for private clinics, should we go for alternate treatments along with FDA approved line of treatment?

Thank you in advance!🫂

Hey,

My mum just started Optune yesterday and doesnt like the case they give. She wants something more stylish to make her feel more herself.

Has anyone found Optune compatible sidebags etc? Or any other ideas appropriated

Hi everyone,

My mother (GBM Grade 4) was supposed to have her very last (30th) session of radiotherapy today. However, she had two focal seizures last night, about an hour apart. We rushed to the hospital and she is currently admitted.

The Current Situation:

• CT Scan Results: The doctors said the tumor is stable and hasn’t grown since the start of treatment. However, the scan shows significant edema (swelling) and a slight midline shift in the surgery area.

• Clinical Progress: Before the seizures, she was doing great. Her consciousness was clear, her "confabulations" had stopped, and she started regaining movement in her paralyzed left arm and leg. She can even hold a small ball with her fingers now.

• Symptoms: She currently does NOT have a fever. She had some transient swelling in her left hand/foot about 2 weeks ago, but that has completely resolved.

The Plan:

The doctors postponed the last radiotherapy session for now. They are focusing on managing the edema with IV fluids/steroids and adjusting her anti-seizure medication (Keppra).

Has anyone else experienced seizures specifically at the very end of radiation despite clinical improvement? Does this sound like "Pseudoprogression" or just treatment-induced inflammation?

I would appreciate any comments, similar experiences, or advice you can share. Thank you so much.

Hello everyone,

My mother was diagnosed in August 2025 with glioblastoma (GBM). She underwent surgery (partial resection), followed by chemoradiotherapy, and she is now starting her 4th round of chemo (Temodal).

We’ve recently been advised to consult this doctor: Dr. Ilyes Baghli, who recommends adding certain vitamins.

I’m trying to understand whether anyone here has experience with this kind of complementary approach (vitamins, supplements, serotonin-related treatments, etc.) alongside standard GBM treatment.

My main concern is whether these could interfere with her current chemotherapy or reduce its effectiveness.

If anyone has personal experience, medical insight, or has discussed this with their oncologist, I would really appreciate hearing your perspective.

Thank you in advance.