Ask HN: Help with Glioblastoma | Hacker News Reader

Ask HN: Help with Glioblastoma

10 pointsdnh4411 comments

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.

I’m very sorry to hear this - I lost my wife a year ago to metastatic melanoma and it was both awful and particularly cruel as she had hope, which was ultimately dashed.

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.

so sorry for your loss

A close immediate family member was diagnosed with glioblastoma. The biggest treatment impact was doing the surgery, and they added a localized drug delivery wafer to combat the cancer. She was also on oral chemotherapy and some steroids. Fortunately, she was able to make a full, mostly symptom free recovery for ~5 years until remission that unfortunately could not be treated and took her life. I consider the treatment a success as 5 years was well beyond the expected 1 year mortality on diagnosis.

Please stay away from these clinics promising you the world for half a million. They're taking advantage of your desperation. Your family member is at stage 4 so the prognosis is not good. Continue doing the surgeries and if a drug delivery placement is an option, I'd pursue that. But beyond that, it's likely that your loved one has limited time left, and you're really talking about extending quality of life by possibly a few years.

Enjoy the time you have with them while being proactive on surgical treatment.

I hope you and you're family doing okay. This is not an easy thing to deal with. A relative of mine has died because of glioblastoma. He survived 14 months after the diagnosis.

I know this might come as very harsh from me but to this day glioblastoma is a death sentence.

I remember myself and others spending hours on the internet looking for trials, resources, success stories and what not. Later I realized that was just part of denial and negotiation.

He went through 2 operations where the portions of tumor were removed. Each time he came out with sort of personality changes, degradation in cognition.

The only thing that helped was that I scored thc oil - it's illegal where I live - and administered it to the relative just for the sake of better mood and quality of life.

I'm sorry to hear your situation. Thymosin Alpha 1 (abbreviated TA1) is a peptide that upregulates T cell responses in the body. This directly helps the immune system perform better.

This is hardly a cure all, but has certainly proven to be effective in other cancers (couldn't find references to gliablastoma) and conditions with compromised immune systems.

This is a summary of usage and safety profile: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7747025/#:~:tex....

You may have some difficulty initially locating it. It may technically be illegal - the FDA banned many peptides recently. It is still findable by searching for clinic that supports the use of peptides (they would have sourcing figured out).

Glioblastoma is very bad news. CAR-T cells are promising but very new and experimental.

Start here: https://duckduckgo.com/?t=ftsa&q=car-t+cells+for+glioblastom...

Getting into a clinical trial will be difficult.

I was recently in a similar situation, not concerning glioblastoma but a different type of solid tumor. I'd look into either neoantigen vaccine trials from reputable universities/companies (e.g. BioNTech) or T cell therapies (e.g. Immunocore). Adding some checkpoint inhibitor as a coadjuvant might help too.

I work in the field and IMHO neoantigen vaccines are the way to go, but personalization of antigen payload is still lacking. This is a bit paradoxical as production is not that expensive, you can get a custom made one for < $6000. The trouble is to pick the right epitopes considering the tumor, the patient's MHC/HLA, his skewed immune responses, etc.

Did you get a tumor genetic profile? A family member had been dealing with the same thing and I have built a tool with their oncologist who has been using it to treat each mutation in the tumor. I would be more than happy to give you access to it.

Turkey tail mushroom has been shown to be helpful when used with chemo for other cancers. The theory is that it helps boost the immune system and offset some of the negative immune system impact of the chemo.

>> I felt that we got taken advantage of while in a desperate and vulnerable situation.

Not a believer, but if there is a hell people like this should go straight there.

I heard a podcast once that mentioned deliberately infecting yourself with bacteria can stop brain cancer. Obviously the results in this article don't sound great, but it could give you some additional people to speak to? Whatever happens, I wish the best for you in this difficult situation.

https://www.nature.com/articles/nature.2012.11080

A cousin got diagnosed with it recently so I looked at the recent research. I found some interesting bits about the zika virus targeting the same stem cells as glioblastoma - which is why zika causes developmental problems in foetus’ brains. The research is ongoing, and there is little evidence that it works (though there is a paper that looks at the case of a woman infected with zika who was in remission), but honestly the pronostic is so bad that if it was me, I’d fly straight to a zika-infested region, you never know... I think there is one in Thailand.

Search for zika and glioblastoma and you’ll find the papers. Good luck.

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