Can anybody tell me of their experiences with whole brain radiotherapy ? I have stage 4 squamous nsclc . Diagnosed June 2012 .

[thatboy]

I had gem/carbo chemotherapy (4 cycles) in 2012 and another 6 cycles of the same late last year . It helped each time. I now have several brain mets . It is difficult to discover whether the radiotherapy has any chance of helping - even if it was only a slim one . I am currently in pretty good health . I am 62 . I have been taking low doses of steroids since the latest diagnosis .

[Hidden]

Hi thatboy,

I'm sorry but I don't know of anyone at this time that is having WBR.

I'm sure you will have been given information, however just in case you haven't, here is a link to a leaflet. beatson.scot.nhs.uk/content...

I know its not the same as hearing a personal account from someone, but I will do my best to see if I can help.

Best wishes,

Beth, on behalf of information and support.

[Hidden]

Hi thatboy

There has been some activity around WBR on cancercompass.com

Maybe it will be of some help to you.

Best wishes,

Beth, on behalf on information and support.

[thatboy in reply to Hidden]

Thanks Beth . Had a look . Like everything else in this crazy cancer-world , full of half truths , charlatans and a sprinkling of genuine experience . but thanks for pointing me that way . I suppose what I do find interesting is that there have been no replies from fellow patients in the same situation on this site . Yet according to the figures my situation is almost commonplace . Is the implication that most site users are stage 1 to 3 and looking for reassurance ?Telling the world how well they are doing so to speak . If that is the case - shouldn't we be trying to encourage more site users who are in in the middle of palliative care like myself , to share their experiences ? paul x

[Harrypalmer]

Hi Paul, you have to bear in mind that this site has under 800 members and all at different stages. If you go to the American site,inspire.com which has thousands of members, and join the squamous NSCLC stage IV group you wil be inundated with people willing to share their experiences and offer advice and all in the same position as yourself. Do keep us posted about your treatment along the way. Sending positive thoughts and hugs Moni x

[topgun]

Except that advice/treatment offered from the other side of the pond will rarely find its way over here in practice. They don't have the NHS to contend with.

[thatboy]

Hi Harrypalmer . Yes - I've been using the Inspire website for as long as this one . Unfortunately though top gun is right . I got plenty of replies . Again none from anyone who had actually had WBR , but plenty from people who knew someone who had !

The overriding consensus was that I should have Gamma Knife therapy (which wasn't the question !). Unfortunately although the latter is available at The Beatson in Glasgow where I get my treatment - the quantity of mets that I have mean I don't qualify for Gamma Knife treatment . Anyway I'm going ahead with WBR as part of a Cancer Research UK trial into quality of life after such radiotherapy called QUARTZ.

Waiting for a date now . I'll let you know how it goes .

[topgun]

Wishing you good luck with the trial, thatboy