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Title : GBM diagnosed Sept 2017, options in the UK/ Europe
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GBM diagnosed Sept 2017, options in the UK/ Europe

Hi Stephen
I'd be very grateful for your guidance.

My husband 55 was diagnosed with GBM Sept 2017
Only symptom lost left peripheral vision and 'pepper smells'
Neuro-oncologist said it was a very large tumour and Joe had been able to adapt to very well without any major symptoms until now...

GBM right temporal&frontal&close to right MCA
Partial debaulking temporal lobe

Usual chemo/radio 6week treatment
Usual chemo 6cycle treatment

Joe had a major stroke close to GBM area, after cycle5 so treatment stopped.
At stroke unit last 8 weeks.
Much better and left side paralysis improved.

Currently on:
Keppra 500mg x2
Clopidogrel 75mg alternate days
DEX 16mg/day 02 Aug
12mg/day 09 Aug
**Stroke dr put him on DEX to see if might improve his movement.
Oncologist said OK to try...
It hasn't made any noticeable difference.
They're weaning off DEX by 4mg/week.
I'd like to reduce faster safely to avoid too much DEX build-up in body. 

Recently, Oncologist said last MRI seems to show new growth according to Prof NeuroRadio however surgeon at meeting is not so sure and suggests MRI shows damage from stroke/treatment?
Oncologist says he has nothing more to offer so now we are on our own.

We would be very grateful for your recommendations please.
We live in LondonUK/Portugal and have family connections to Drs/Pharmacists in Portugal should you recommend anything that might be harder to source.

I found your website following an article I was reading re Ben Williams.

We worked so hard to retire in our 50s and now we're ready, we both get hit by cancer... but we're strong and positive and won't give up! 
Tiredness makes it hard for us to do the necessary research needed...

Please can you give us suggestions of what you would recommend might be the best protocol for my husband to follow?

Many thanks,
Jane

Following on from my post sent moments ago about Joe's GBM I forgot to add:
MGMT unmethylated
IDH1 no mutation
ATRX likely retained

Stephen W14 August 2018 at 11:30

Your husband's oncologist appears to have a limited toolkit if he's not able to offer any salvage therapy.

If true progression is confirmed, and you're able to travel, the following European trials are interesting:

https://clinicaltrials.gov/ct2/show/NCT03294486 (this is a French trial, and not dissimilar in principle to the Tocagen therapy offered in North America, Toca511+ FC)

https://clinicaltrials.gov/ct2/show/NCT02866747 (also in France, a trial of hypofractionated radiation with or without immune checkpoint inhibitor durvalumab)

There are trials recruiting in the UK and Spain for EGFR-directed antibody-drug congjugates, if his tumor if his tumor is positive for EGFR amplification (was this tested?).

There are also trials in the UK and Spain with immune checkpoint inhibitors for advanced solid tumors. Of all these trials I like the first one mentioned above the best (the oncolytic virus/gene therapy trial in France).

Do you have any other pathology information beyond the MGMT, IDH1 and ATRX results?

Hi Stephen,
Thanks so much for your quick and considered response.

I am totally ignorant regarding trials and bit anxious..
Is your preferred trial the first of its kind on humans or does it have evidence of success?
Statistically relevant?...
Please forgive my ignorance..

Joe's oncologist has tried various options with other patients, but is reluctant to offer anything for Joe.
When I queried about possible immunotherapy, he replied it could cause terrible diarrhoea and that Joe wasn't fit enough to do it?
He said he could suffer terribly, lose 10kg and he's not happy to do it to someone as sick as Joe...?

Joe's not underweight for his height, but maybe he is referring to his recent stroke and left side partial paralysis?
I will enquire about this again..

He said he could offer Bendamustine to Joe but that he doesn't really like it.
He said he's tired of giving standard care and it not working and that he's pushing forward to change this in near future.

This is his profile which I think looks quite impressive? www.uclh.nhs.uk/OurServices/Consultants/Pages/DrPaulMulholland.aspx

I will ask oncologist if there is any more pathology test results for Joe.
Which pathology tests would you recommend I ask Joe's oncologist please?

Also, do you recommend Joe follows any
Repurposed drugs like Prof Williams?
Or supplements?

Many thanks, I'm very grateful for your time and support
Jane

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