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
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?
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
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
The TG6002/5-FC trial in France might be a first-in-human trial, I'm not sure. I like it based on its similarity to Toca 511 + FC, which does have good human data from phase 1 trials in North America. Both therapies make use of a virus to transmit a gene into the tumor cells that encodes for a cytosine deaminase that converts flucytosine into the chemotherapy drug 5-fluorouracil. They are quite similar in principle. Differences include TG6002 being injected intravenously while Toca 511 is usually injected directly into the brain. The TG6002 trial is also not as far along, so is still in the phase 1 dose finding stage, while Toca 511 + FC is in phase 2.
ReplyDeleteWhat kind of immunotherapy were you discussing with his oncologist? I assume you were discussing immune checkpoint inhibitors if he was worried about diarrhea, and not vaccines.
I've not seen any convincing data on bendamustine as a therapy for recurrent GBM. In one single arm trial, 16 patients were treated with bendamustine at first or second GBM recurrence. Only one patient (6%) was progression-free at 6 months, a rather poor statistic, and the trial was stopped for futility.
https://www.ncbi.nlm.nih.gov/pubmed/21626071
As for pathology, I would ask about EGFR amplification and the EGFRvIII mutation. I've been in contact with other patients who've had Mulholland as their NO, and these tests were included in their standard pathology report.
Yes, with a GBM diagnosis I would be doing repurposed drugs and supplements, which is the core of what this blog is about. Currently on my "A-list" are the supplements Boswellia (to help reduce cerebral edema if this is a problem), cannabinoids (THC, CBD), curcumin (Longvida), therapeutic mushroom products (Maitake, PSK/PSP), probiotics, omega 3 fish oils, melatonin, vitamin D3, and drugs such as Celebrex (or etodolac), metformin, ACE inhibitors (such as captopril) or -sartans (such as telmisartan), and also chloroquine especially if positive for EGFR amplification or EGFRvIII mutation.
Unfortunately nobody knows what an optimal cocktail looks like and it is probably different for each individual. Formal cocktails such as CUSP9 is in clinical trial:
https://clinicaltrials.gov/ct2/show/NCT02770378
Please, excuse my interruption, Stephen. Maybe this question was already answered multiple times, but could you please explain why DCA is in your "B-list" and does not deserve to be in the "A" category? It seems, there is an amount of documented data, which demonstrates its efficacy.
DeleteThanks for the reminder that I need to write a disclaimer that the rankings take into consideration many factors in addition to efficacy, such as availability and ease of access, cost, side-effects and safety etc. The relative weight I give to all these factors must be subjective, and the rankings can easily change as more information comes in. DCA was likely in my A list at one time. I think I lost some enthusiasm for because of the risk of peripheral neuropathy and other side effects at doses likely to be effective. Formal phase 1 trials have been carried out, but testing of DCA has not advanced further than this.
Deletehttps://www.ncbi.nlm.nih.gov/pubmed/24297161
https://www.ncbi.nlm.nih.gov/pubmed/25762000
A phase I open-labeled, single-arm, dose-escalation, study of dichloroacetate (DCA) in patients with advanced solid tumors
I certainly would not try to discourage someone from using DCA, so long as they are aware of the most common side effects and what to look out for. I've heard of cases of severe neuropathy from DCA which took a long time to recover from.
Jane, We also consulted with the same oncologist regarding my mother's GBM. Basically he ruled out anything beyond standard of care (chemo/radiotherapy).
ReplyDeleteHe said this was because mum had suffered a haemorrhage two days postop. We didn't even get any details of the treatments he has to offer.
According to the internet he's the UK's leading oncologist for this disease - but not for everyone it seems.