Malignant Glioblastoma

Hi there,

Welcome to the group, though I know you and everyone else doesn't really want to be here. 

I care for my my wife who has a GBM and we're 15 months in. She still has remaining tumour but for now they're not treating it until they see active growth. 

I know you were signposted here from another group so I won't repeat all the Macmillan services here but I would add that if you or your partner need to talk please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

As far as other treatment options there's isn't a lot. Compared to some other cancers, brain tumours are tough to get at with drugs so new treatments are rare. It sounds like you're partner has had what's called the Stupp protocol of surgery + radiotherapy + temozolomide. The only other treatment I read about people receiving via the NHS here is the PCV chemo or variants of that.

Having said that someone posted this link a while back which  talks about a number of treatments that are being worked on currently so hopefully there will be other options soon. Glioblastoma: Current Therapies and Recent Therapeutic Advances - Personalize My Medicine

The most talked about of these is the vaccine option which someone called Mat in this group has tried. Here's a link to the thread where he discusses this: Dendritic Cell Therapy (AKA DCVax) - Macmillan Online Community

I wish you and your partner all the best and please do use this group to ask questions or just vent about how cruel this all is.

Sending a virtual hug,

Chris

Is it okay to consume sugar? Whipped cream, ice cream , chocolate? My partner is really craving them. 
a bit worried

That will be the steroids, they cause an increase in appetite and especially for sweet things. My wife has put on 25kg since last year and most of that went on in the first 3-4 months. 

I would advise eating a normal healthy diet as much as possible and just having the odd sweet treat. We had to remove all chocolate, biscuits, crisps etc from the house. We used to just have them for the kids to take in their packed lunch with a sandwich but now they just stick to fruit as otherwise mummy gets there first. The other thing she likes is bread but we can't not have bread in the house so that's been a struggle. 

The advice with steroids is to taper them down slowly to a level that controls symptoms. We have got my wife down to just 0.5mg dexamethasone a day but it's been difficult as the steroids do really help with her headaches.

Lastly, I would just say to go easy on your partner when they eat those things. At times I would get a bit stressed by the weight gain and lose my patience a bit with the eating. It's them who are going through this awful disease and if a bit of cake makes them happy then so be it.  

Hope this helps,

Chris