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'

Brain Fighter
Posted by

Morning

Sorry again, I haven't used this for a while. I don't think you're meant to send email adresses, I'm happy to talk to anyone, so is there a good way to talk/contact?

Hope to catch you soon, Chris

Madesp
Posted by

Hi

If you want to private message anyone you scroll to the top where it says 

ONLINE COMMUNITY 

just below this you will see an envelope and click on envelope to message someone who will be the only one to see this. When they reply you will see a number by the envelope to see how many messages you have that have not yet been read by yourself. Hope this makes sense. X

Mad 
HelenNM
Posted by

Would you mind telling me how you got a private prescription for Satuvex,? We were told a month ago that my husbands  tumour was starting to regrow and that treatment would make him worse now. Hes been taking cannabis oil and seems stable for now but would really like the chance to try this or something similar.  Thank you.

Helen 

Madesp
Posted by

Speak to the neurologist about an individual funding request to enable prescription on the NHS or alternatively go private. 

Mad 
Brain Fighter
Posted by

Hi Helen

I visit Royal Marsden and they are very tight on prescribing drugs, unless there is huge clinical evidence data to support any product. I wanted Sativex, and my consultant pushed Professor Dalgleish (Parkside Hospital London) and I was diagnosed Sativex by him, it arrived in a heart beat from Glasgow.

I wish things were easier with GBM4, but fighting it in this country isn’t as easy as others. Cannabis is the biggest thing in my life, I have 1:1 tablets, I have suppositories 1:1, I vape the herb as much as possible at night. In my opinion it’s one of the most important things in my life.

Let me know if there is anything else I can do......

Pass my best regards to your husband

Chris 

Lisa81sel
Posted by

Hi Chris my name is lisa

how long have u had this?

i am beside myself tbh and need some help, Liam started getting more headaches yesterday but he is only on g of steroids so they upping them today

Dreamthief
Posted by

Hi 

To send and recieve PM's all you need do is click/tap on a members username which will bring up their profile window. Under their name you will see the 'Add Friend' button.  Click on this and Macmillan will send then a friend request email: Once they accept you can send eachother private messages.

If this seems a bit confusing there is clearer info about PM's here on the 'Help Page'

Hope this is of some help, G n' J