Back in December 2023 a family member was diagnosed with grade 4 glioblastoma. The median life expectancy from diagnosis is 12 months.
Two weeks after the diagnosis he had surgery which was successful in removing the tumour without a huge amount of cognitive impairment. The then had the standard radio and chemo therapy for six months.
In July of this year he had another scan which showed two more tumours, which were also surgically removed successfully.
In between the two surgeries we found a treatment called DCVax from Northwest Biotherapeutics that had good clinical evidence, but not enough tumour material was recovered from the surgery in able to move forward with this treatment.
We're now looking at other treatment options for this in addition to what his oncologist is recommending which is Avastin.
The whole experimental medicine field in terms of glioblastoma treatment seems to be a bit a minefield full of snake-oil salesman so I wanted to ask everyone here if they have any personal knowledge of any clinic or treatment that helped or may have helped.
Any advice would be helpful, including herbal remedies or alternative treatments. The situation is pretty desperate now so we'll try anything that has a low risk profile. We people with medical backgrounds in the family to try and make sure we're not doing more harm than good, and the patient is coordinating all this with his oncologist.
Also as a warning to others who might find this post in the future; a few months ago we spoke with a seemingly reputable clinic in the Middle East which offered some experimental therapy. They wanted us to pay about $1000 for the initial consultation but we asked them first to give us a ballpark figure for what the treatment would cost and they told us about $50,000. We then proceeded to pay for the consultation and were then told the whole treatment would cost about $500,000 and would involve travel to Central Asia for the treatment. I felt that we got taken advantage of while in a desperate and vulnerable situation.
Anyway any advice anyone could give would be super appreciated.
Thank you.
Try to consult with a big cancer center like MSK, Dana Farber, MD Anderson, etc perhaps there’s a trial that would be helpful with CART or similar therapy, although it sounds like you pursued this route. Stay away from the internet cures and tune out well meaning friends with vitamins and nonsense.
Also, you don’t want to hear this, but you need to be prepared for an undesirable outcome and think about the comfort and life your relative will live. My wife went through 3 brain surgeries, did well and was walking around the streets of NYC, happy, celebrating moving to the next phase. 3 days later, she died due to an unexpected complication. I miss her terribly, but we somehow had fun traveling hundreds of miles for cancer treatments, i wouldn’t give that up for anything.
Also, take care of yourself. Talk to someone, a therapist, priest, friend, stranger, partner, etc. In my professional and personal life, I’m the guy that makes problems go away. I can be a cocky bastard sometimes. With cancer, you’re fighting math, and sometimes no matter what you do you can’t assert the control that you feel you can and the outcomes are out of your hands.
Good luck and please be well.