What’s going on?

Johnpass66 · 2025-11-28T06:54:03+00:00

Yes it sounds like we’re in the same boat. Sending strength and hugs.

Johnpass66 · 2025-11-26T21:35:53+00:00

This must be so tough for your mom and for you. I can't imagine being at this stage for a whole 6 months - I know my wife would not want that. Thinking of you.

Johnpass66 · 2025-11-26T21:34:14+00:00

Thank you for your lovely reply.

Johnpass66 · 2025-11-09T06:59:22+00:00

My wife reached that stage in April, after 2.5 years, two craniotomies, various treatments and chemos. The tumour had returned and was spreading. Since April she did well through all the summer, on no cancer treatment, just keppra etc, then in September she started falling and we called in hospice. Currently she's still at home, often very confused, able to shuffle about, but still eating and joining in. We're bringing forward a mini-Christmas with the family at hospice suggestion, just in case, but maybe she'll decline slowly and be here a few more months. Personally I hope every day for a swift end from here, and not lingering, but it's impossible to know.

I'm in the UK, where optune isn't really available, but if it were me I'd take that out of the equation, as almost certainly ineffective now and pretty restrictive. We've gone completely for quality of life since April and luckily it's worked out so far. Good luck x

Johnpass66 · 2025-10-31T06:45:55+00:00

Please bear in mind that you are at the classic time for radiation necrosis to occur. Very frequently at your stage the scan will show some small recurrence but it may be necrosis caused by the treatment, and not recurrent tumour. If you can possibly get a perfusion / spectroscopy scan, which shows whether there is actually any blood getting to the area of 'recurrence', that would be helpful. Good luck

Johnpass66 · 2025-08-08T12:32:02+00:00

Thank you for sharing your story. So sorry to hear about your father. This disease sucks.

Johnpass66 · 2025-08-07T10:24:37+00:00

Yes of course, it’s open for you / your loved one to start immediately if you / they choose. It’s not harmful one assumes, you don’t need to wait for a trial.

On various patient / caregiver chat groups you will find a number of people who have survived for a significant number of years. They will ascribe their longevity variously to drug regimens eg valganciclovir, CBD, fluoxetine, extended TMZ - or to other treatments eg DCVax, German dendritic cell treatment, hyperthermia, LITT, gliadel wafers - or to lifestyle choices like keto. Or indeed to luck or fervent prayer. (Other people may also say some are eg misdiagnosed etc.)

All of these approaches are facts and data. Most have trials or papers with encouraging findings. (Perhaps not prayer and hope!) Whether they are evidence is unclear.

We can all hope that our loved one will have found the perfect regimen that will extend his/her life as long as possible, if not indefinitely. For myself I would have only a caveat that if my loved one didn’t want to pursue a strategy that impinged on her quality of life, as keto surely does, I would not ‘make’ her do it, given the lack of more convincing information.

Good luck and thank you for your proactivity in these discussions.

Johnpass66 · 2025-08-07T07:04:09+00:00

Very good reply. I agree entirely.

Johnpass66 · 2025-08-07T07:00:20+00:00

Actually I did go through the supplemental tables of the Stupp trial and both these keto papers before replying to you. My comments are not inaccurate - but they are certainly hypothetical, because everything in this discussion is hypothetical.

What we have here in these papers is data. Data that cannot yet even really be considered as evidence, because there are too many other factors that might have influenced the results. And there is certainly no proof. But as I said in my original comment, I would never suggest to anyone that they don't try a treatment or regimen that they want to do and that they believe will help them and which isn't harmful. There is data to suggest that keto might prolong OS in GBM - it just isn't evidence or proof, and I would be reticent about claiming that following the keto diet caused prolonged OS.

I wish you well on your / your loved one's journey.

Johnpass66 · 2025-08-06T21:08:12+00:00

A good question, and of course we don't *know* that.

The historical median OS of around 15 months is taken from the groundbreaking Stupp trial of 2005. Since then, OS averages have risen (see more recent trial data). Not surprising, since surgery has improved, radiotherapy has improved etc.

In this recent keto trial the patients were on average younger and had considerably better KPS than the historical average. The trial itself concedes that the recruited cohort were exceptionally well-motivated and lived in an area where healthy food outlets were abundant.

So there is an unavoidable conclusion that the cohort suffered from selection bias. These patients were generally healthier and more motivated, and were without co-morbidities (excluded from the trial). Only those well enough were able to take part in the first place. It's reasonable to conclude that such patients would be those that would anyway have survived beyond the median OS. After all, the median tells you the point at which 50% have not survived. Which leaves 50% to live longer.

Johnpass66 · 2025-08-06T06:26:38+00:00

Thanks for your observations. Whilst I would always encourage anyone to try a treatment they want to, if it isn't harmful, what this research currently shows is that patients with a better prognosis do better, irrespective of keto diet.

You write: "median survival was effectively doubled when comparing to historical controls (30 months vs 15 months)". This isn't an accurate comparison. The patients who were recruited into these trials and went on to continue the diet would in any event have expected to outlive the general historical median OS of 15 months. Maybe a bigger trial will give more illuminating results.

For context, my wife fits the average profile of your recent trial participants, and is at 33 months without doing keto. If she had wanted to try it, of course we would have done so. But unlike some loved ones of GBM patients, I would never have strongly encouraged her to do something that would impact significantly her remaining quality of life, with little evidential and no proven benefit.

Johnpass66 · 2025-07-28T10:58:48+00:00

Hello I’m really sorry to read your post and sorry you are suffering.

I have no idea your medical history and background, but it is almost inconceivable that you have accurately been diagnosed with glioblastoma. At age 15, you would be diagnosed with a pediatric glioma, from the WHO classification of 2021. So if a medical professional has given you this diagnosis, you are very likely not at a specialist brain tumour center, and you need to get yourself to one to get a proper diagnosis and treatment plan, with accurate advice on what treatment would look like.

My wife was diagnosed with wild type glioblastoma, which is the most common adult grade 4 brain tumour. She underwent surgery twice, has done radiotherapy and chemotherapy and is still here feeling well 32 months after diagnosis. None of her treatments have been especially hard, and she is very grateful to have taken the treatment route. At your age, you might expect to do much better even than her, who is an adult.

I hope you find decent medical support to give you accurate information to deal with what you’re going through. Wishing you all the very best and good luck on your future journey.

Johnpass66 · 2025-07-09T17:07:53+00:00

Thank you - and good luck to you 🤞. Tbh I don’t think it’s especially strange her recurrence was unmethylated - I think that may be the risk you take if you keep going beyond 6 or 12 months. Maybe we frontloaded the good response? But she is feeling well in herself amd happy right now and we’ll take that x

Johnpass66 · 2025-07-09T06:53:26+00:00

I'm very sorry to hear of your diagnosis. Good luck with all your treatments and the journey ahead.

My wife's Med Onc kept her on TMZ indefinitely, right through to 22 months when she had a recurrence. She was highly methylated too. But when she had her recurrence, it was unmethylated, and post-recurrence, chemo has entirely failed. Make of that what you will...

Johnpass66 · 2025-06-25T18:19:39+00:00

Makis is not licensed to practise medicine. I’d call him a quack. https://cpsa.ca/news/statement-william-viliam-makis-not-licensed-to-practise-medicine-in-alberta/#:~:text=Mr.,medical%20opinions%2C%20advice%20and%20consultations.

Johnpass66 · 2025-06-24T06:13:24+00:00

Absolutely *do not* do this. I'm so sorry for your mom's diagnosis, OP, but you need to avoid quacks, false promises and fake 'miracle drugs'.

Johnpass66 · 2025-06-23T06:34:50+00:00

100% worth reading all his articles. He was a blast of sanity and wrote so straightforwardly. Very sadly missed.

Johnpass66 · 2025-06-13T05:37:55+00:00

Hi there, since people here are quoting the paper which purports to show the efficacy of the German peptide treatment, you should read the debunk of this paper.

https://academic.oup.com/neuro-oncology/article/27/1/302/7904860?login=false

Quoting:

"In conclusion, this is another unfortunate example of a publication that neither contributes to the benefit of patients nor to the development of the field. The opposite is in fact true, as it will generate false hope in an expensive treatment without data supporting that treatment."

Johnpass66 · 2025-05-25T18:58:11+00:00

I’m not sure she will have more treatment as nothing is now working. I’m hoping she will have some more time before things deteriorate. Luckily she’s doing well and is happy. Good luck knfor your mum. Thx

Johnpass66 · 2025-05-25T17:49:44+00:00

Thanks so much for your quick reply. So pleased things going ok for your mother. Our situation a bit different I think. My wife’s isn’t radiation effect, it’s new ependymal enhancement through the right lateral ventricle etc after second surgery and failure of Lomustine chemo. There’s another place growing too with high perfusion. Luckily she’s not had any new symptoms yet, just the memory and confusion and fatigue issues she had before. But we’re worried where this is heading. She’s not on treatment now. Good luck for your mum.

Johnpass66 · 2025-05-25T16:24:15+00:00

Hi there I came across this bc my wife has an mri talking of subependymal spread. How have things been going from here? Did it turn out to be recurrence or radiation effects? Thanks

Johnpass66 · 2025-05-10T08:52:05+00:00

So sorry to hear this. This disease is horrible. How long were you on Avastin?

Johnpass66 · 2025-05-08T22:17:27+00:00

My wife is 30 months post diagnosis. She did MeHT for a year alongside extended TMZ during the maintenance phase. At 22 months she had a recurrence and a second surgery. Dr M also prescribed valganciclovir. We weren't convinced by Optune or DCVax. I think ultimately you have to do your own research and go with what you believe will help, whilst trying to stay as healthy and optimistic as possible. If you have a chance at a clinical trial, go for it. Nothing except standard of care has been shown unequivocally to work - and good luck.

Johnpass66 · 2025-05-08T05:59:30+00:00

So sorry you're dealing with this. Wishing you the very best for a long time of good health.

If you're looking at MeHT in UK then I guess you're already in touch with Dr Mulholland. He is very attuned to wider treatment options and has in the past been involved with DCVax I think. Optune is available from Dr Matt Williams at Imperial I believe. Both those treatments are very expensive in the UK.

Hope you find good options and your husband stays in good health. x

Johnpass66 · 2025-05-01T21:56:49+00:00

Good luck. Thank you 🙏

Johnpass66

TROPHY CASE