Glioblastoma multiforme brain tumour

Glioblastoma multiforme (GBM) is a type of brain tumour. If you're suffering from glioblastoma multiforme, or know someone who is, join this support group.

Knowledge Share: Glioblastoma - beyond the 'Standard of Care'

Neversurrender
Posted by

Hi all,

Son of a 63-year-old woman diagnosed with GBM in October 2017.

As you will all know, the doctors on the NHS prescribe the standard of care (SOC) treatment - surgery (if possible), followed by radiotherapy and chemotherapy (6 months in our case post-radiotherapy).

They also admit that ultimately, this treatment has limited efficacy. But they do not offer any treatments beyond the SOC on the NHS. Anything else, as they will tell you, is 'unproven' and therefore they won't recommend.

Given that we don't have time to wait for proof of efficacy (as determined by NICE or FDA guidelines), it seems logical to get whatever treatment has some evidence of effectiveness - even if it's not universally effective.

I thought it might be nice to use this post for us to share our knowledge of non-SOC treatments that are offered either through trials, or privately. These, for example, could be:

  • Oncolytic Virus treatments
  • Immuntherapy treatments
  • Repurposed medicines 
  • Technologically-based treatments


Where possible, please also provide advice as to

  • where / how these can be obtained
  • how much they cost
  • links to support evidence of their efficacy if lesser-known
  • links for more information

As this is a UK forum, UK sources for these would be especially useful - though please provide examples of where these can be obtained abroad too, as this may be an option for many of us.

I'll add a couple that I am aware of.


Oncolytic Virus Trial

Immunotherapy

Repurposed Drugs


Technology

Hope that helps to kick things off. Will look to add more as I discover them but please do add your own, hopefully we can create a useful resource here.

lthenderson
Posted by

My mother received Pembrolizumab but unfortunately it didn't have any effect on her and treatment was stopped at two doses. Here in the United States, it cost U.S. $80,000 / dose and insurance didn't cover it. In the end, it was paid for by the drug company and they were only going to pay for a year's worth. 

Brain Fighter
Posted by

Hi

My GMB4 started in september last year.


I’d be happy to go through what’s happened to me since then if you want? My last consultant meeting was Monday this week and I had some surprise news that the tumour had reduced in size.


If you want to contact via my email let me know. Amazing post by the way, great level of detail.


All the best


Chris

Neversurrender
Posted by

Hi Chris - PM me

jjorozco
Posted by

Hi

I would like to share my girlfriends treatment. Her doctor is a phd neuro-oncologist specialized in tumour genomics. 

My 23 year old girlfriens has been diagnosed 1 month ago with proneural GBM type. 


I've been reading a lot of info and also having long talks with our Neuro-oncologist. What I understand now is that tretaments are totally related to the type of mutations that each tumour has.


We are waiting for some test as MGMT and also viruses tests. He is trying to find if cytomegalovirus is in her system and even inside tumour cells. He told us that there is a probability that cytomegalovirus ia the reaponsbale of mutations that lead to some types of tumours. According to our doctor, this has not beeen totally proved but there is a huge chance that treating this virus could help stop the spread of the tumour.


He has also prescribed Metformin. This drug that is commonly prescribed for diabetes patients. He also prescribed sertraline that is an antidepressant. According to him this drug would also help to battle the tumour.


As soon as I have more info or some drugs prescribed  I'll share it with  you 

jazzlover133
Posted by

My husband and I just found out he had GBM stage 4 on his birthday this last month. He is 27 and I’m 24 and we have a baby girl due this July. Please tell me what you’ve done to shrink your tumor. 

Kate Miller 

Neversurrender
Posted by

Kate,

Sorry to hear that.

In my Mum's case she had a total resection followed by radiotherapy and chemotherapy - of which she is on her third cycle. She gets the MRI scan result tomorrow, but looks like there's a good chance the tumour has recurred.

Have you spoken to your doctors about the options?

Neversurrender
Posted by

So Mum's tumour has recurred, surgery not an option, TMZ stopped as not working.

Not sure what to do now. NO offers one phase 1 trial, or Lomustine. He said if it was him, he wouldn't bother with either.

lthenderson
Posted by

Sorry to hear about the news. I'm in this situation with my mother currently. Our focus the last couple months have been making lots of memories, trying to cross off items on my mother's bucket list while she is still able to do them, etc. With no cure in sight, the best one can do with GBM is to fight it to a draw hopefully into the distant future. Right now, I am concentrating on the making of memories. In the future, I will so what I can to support a cure for this disease. 

Best wishes.

mfg
Posted by

Hi Chris 

could i have your email to ask you some questions on how your getting on ? 

latchbrook
Posted by

Hi  and welcome to the online community

You do not need another member's email to ask a question just simply reply to their message, putting their name at the top of the post, with the questions that you want to ask. In fact, Macmillan ask that you don't reveal personal details like your full name or email address as, unfortunately, there are unscrupulous people who trawl sites looking for personal information which they can use fraudulently.

To get the best out of this group could I suggest that you join as you can then start your own threads to ask questions and also get notifications when new posts appear. To do this click on 'join this group' at the top of the page. When you want to ask a question select 'start a discussion', give your post a heading and then type your question in the main body of the post.

If you're not sure how to find your way around the site there'll always be someone on hand to help you.

When you feel up to it, it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Brain Fighter
Posted by

Hi 

[edited by admin] I’m happy to talk about what’s happened and where I am now......

all the best, Chris 

Lisa81sel
Posted by

Hi chris

pls can you go through this with me.

my brother has been diagnosed with this last week and we are all very scared 

a positive ending is what we need 

thanks

lisa

Brain Fighter
Posted by

Hi Lisa

Where do you live? I'm a GBM4 chap, diagnosed 10th September 2017, operated on 13th Sept. The tumour is on my left side, and has an impact on me speaking and my hearing, from time to time. I take supplements, eat ok, not that clean, don't drink alcohol as i just don't really like it anymore, and I take Episenta every day to manage seizures.

Cannabis is the biggest thing for me. I have got Sativex (cannabis spray) which was prescribed through a private appointment, I have many other forms of it after doing lots of research. I am attending a meeting with brains trust in London on Nov 1st where they will present cannabinoid results, and other brain related topics.

Let me know if you want to talk. I know this thing is incredibly hard, in every perspective.

Stay in touch, pass your brother my best wishes.....

Chris

Brain Fighter
Posted by

Hello

Sorry, i havent really looked at this for a while. How do you PM?