We Talk Brain Tumours

Good morning all, Robin that sounds like a very busy day. Hope you have a good day.

Sue, we also didn't have a biopsy but B had the debulk directly. I know that wasn't possible with Paul due to the position. I found it interesting when you said there was a possibility it was was a different type of bt. Not just the co-incidence of that but that gbm is primarily know as a regrowth tumour.

I've read that the majority of gbm regrowths happen next to - or within two cms from the original site. I believe 80% do that.

After the original mri our first ns said he thought it was gbm - it seems possible to tell as there is an area of necrosis in the centre of the tumour and the pathology confirmed that. I wonder if Paul's second tumour didn't look typical so led the doctors astray?

We have never experienced that sort of puffy eyed problem but B was generally quite bloated looking after the second tumour. I think it was the cause of the confusion he had. The ns said that sometimes the anaesthetist has to give a lot of fluid and he thought that had happened during B's operation. It took a few days long for the dex to get rid of all that fluid.

I'm sure Robin is right, like the list of side effects, if they told us every possible effect we would be nervous wrecks. It's a fine line they have to tread. Happily WTBT is such a great source.

xx

 Morning all and thank you CH and Robin for wise words, as always. I didn't mean to suggest that GBM could only spread by tracking. When I asked the NS about the chances of it being GBM again, he explained that there were 2 or 3 ways in which a GBM could spread to a different site, the tracking being one of those.

I suspect that when the new lesion showed up on the MRI scan, it did not look typical of a GBM. Both the Oncologist and the NS said separately that they had no idea what the lesion was and the NS told us that it might be a benign tumour of the meninges but he thought it best to proceed straight to surgery because of Paul's history. Even after the surgery when the NS came to see Paul on the ward, he actually said that he did not know what the mass was and that it was unusual in that it seemed to have been growing downwards from the dura but he went on to say that it had all come out cleanly.

CH, I guess that with this one, the regrowth is one of the 20% that is more than 2 cms away from the original site as the original tumour is in the basal ganglia. Perhaps this is why the NS said he is going to ask the Onc whether more RT can be given but no doubt Dr Vijay will advise us about that when we see him again on the 22nd.

Paul says he feels good today so I am going to ring some friends and hopefully arrange a pub meal or Sunday lunch out. I think it will do him good to get out of the house for a bit.

Hope everyone has a peaceful weekend.

xxx

Mrtyen, One of those post was also put on my wall,I'm going to post this twice then

I'm going to report tyhis post as abuse to try to get's Macs attention.

I cannot tell you how outraged and insensed I am that such has been posted on pages where I have written the story of what has happened to us these last years.

I have rarely been so hurt and angry.

I think I will delete my profile and not post on Mac anymore.

As far as I am aware I  have the stupid setting so that only friends can post on my wall. If that is not the case perhaps someone from Mac will tell me otherwsier how to do it.

Fed up to the back teeth.

CH

...

CH,

I feel much the same.   I cannot find a setting that restricts the viewing of my profile or wall postings.  I presume then, that any Fifi, Freddie or Dido can register, view our profiles and write as they like on our walls leaving maybe phishing email addresses and whatever else they choose? 

Martyn.

I know Martyn,

I know no site can be immune to attack but it's the fact it's on our profile pages that got to me. I have deleted our profile now. I saw on other threads that many are getting this sort of spam rubbish.

I feel so let down, this is like a company forum and not what we have come to expect. many of us write extremely personal things on our profiles.

CH

I have now deleted my profile.  Unfortunately this included my tale of  "The Train Journey".

Martyn

How sad its come to this-Bring back Share!. Cant remember any such problems there? Also sad to lose so many  people who dont post now-no wonder if this is how this forum is 'regulated'?

Martyn and CH, I can well understand how upset and angry you must be. It is such a tragedy that the changes to this site have undermined the mutual trust and support that has always been such an important feature to us long users. I too am very much minded to stop posting here but I really feel that we need somewhere else to write the sort of posts for which we have used this site.

Since we have a MAC group in FB I for one intend to write there for now. I did start a discussion thread there entitled WTBT last week so hope that you will feel comfortable posting there. From what I can see, FB is much more aware of security and privacy.

Please stay in touch. Would miss you all so much.

xxx