We Talk Brain Tumours

hi everyone, my husband Stewart is 53 and had his gbm grade iv diagnosed on 20th october after a debulking 5 days prior when they suspected what was confirmed in the biopsy. it has been almost 3 wks since his radio and first course of chemotherapy finished and while they said it would take 4 to 6 wks before we noticed any kind of improvement we never expected some things to get worse i.e. the "drop" seizures becoming more frequent and now having urinary incontinence with them ( the last 3 times out of 5 ) he is getting more confused and sleepy and unsteady, can he improve from all these effects? called the nurse consultant at the Beatson who ordered via our GP an increase in one of his anti convulsants and news to me that he had been referred to a neurologist re seizures. He also takes steroids which had been up to 12mg and are gradually being decreased 2mg a fortnight so maybe that might make the biggest difference once they're cut right back eh? This forum is bizarrely giving me some empowerment knowing that some practical advice is just a wee click away from people who really understand and can totally empathise. Medical staff are nice but seem very blasé about everything as they probably have become as a mental defence mechanism.  Best wishes to all of you on this site, hope to hear from you with any advice you have learned from your experiences. xxxxxxxx 

Hi Hazy

I have recently posted a very similar thread as we are now 7 weeks post radiotherapy (without the chemo as Rob was not deemed well enough to cope with both).  We have had no improvement and he is currently deteriorating quite rapidly.  We get the 6 week scan results tomorrow and I am dreading it.  He is confused, agitated, has no speech and can only shuffle  a few steps with assistance.  I knew they couldn't cure him but was hoping that he would get enough benefit to at least have one more holiday and talk to us all about anything else he wanted to do.  Not feeling at all hopeful at the moment and wish we could get tomorrow over and done with.  Best wishes

Jenny

hi Jenny, hoping for the best for you both tomorrow. Hope you get back and let us know how it went. maybe we could have a private chat and I'll give you my email address. Isn't this just so horribly surreal, this whole scenario? Things just going from bad to worse here too,really hope that my feelings of doom and gloom are going to be thwarted by a nice surprise that its been as successful as it could ever expect it to be, is that normal?

Love to all  Hazel xxxxxx 

Hello all.  New to this site but have been reading many of your posts and profiles.  My wife was diagnosed with GBM in Aug 10.  Surgery Chaemo and RT initially went well and she was selected for Celengitide trial.  Unfortunately she has not tolerated the subsequent chaemo (Temzolomide) as her white cell count plummeted so this treatment has stopped.

I kind of know what lies ahead and am trying to remain positive.  We have 2 young children aged 5 and 6 and one of my major fears is how I prepare them for what will happen over the coming months/years. 

On a more practical note, Jo is currently well with few symptoms other than loss of vision and we have a family ski holiday booked in a couple of weeks.  Does anyone know anybody who provides travel insurance to the likes of us?

Jonesy

Hello

I am new to this site although confess to having lurked for quite a while so know many names, apologies just couldn't bring myself to joining..

My husband was diagnosed with GBM IV in January 2010, he had surgery followed by RT and TMZ then two cycles of TMZ before developing right sided weakness and speech problems so was changed to PCV, he has just had his fifth cycle of PCV although Procarbazine had to be dropped!  Although the tumour shows signs of progression he is coping fairly well, mobility is poor and speech almost nil we have made use of all offers of help so have DN and macmillan nurses OT and physio as well as a weekly vist to the hospice.

I know this is of no use to any one on this site at present but have you seen the news of a new Phase II trial in USA?  Its a vaccine for brain tumours called DCVax and being produced by a company call Northwest biotherapeutics.  Early reports (from Phase I) are showing some amazing results with median survivial improving from 14.6 months to greater than 33.8 months and some patients showing no progression beyond 45 months. 

Nothing personal but wish I wasn't here

JMS

hi all, yes in total agreement that we wish we weren't here and we didn't have to seek some kind of reason/solace/support from all of our experiences but unfortunately we are human and all looking for some coping mechanisms and this forum has helped me knowing that we are not alone going through this. Can anybody tell me if in their experiences things seemed really bad about 3 wks post rad/chemo  for to be pleasantly surprised with improvement by wk6 post treatment or is it downhill from hereon?

Thinking of you all 

Hazel x

Hi. My first post so fingers crossed it works...

Unfortunately I didn't find this site when I most needed it but I hope no one will mind me joining now.  If there is a more appropriate forum that anyone knows of I'd be grateful if you can point me in the right direction.

My husband was diagnosed with GBM in January 2010 and after what felt like an age and yet a blink of the eye he died in May 2010. I'm still having trouble processsing what happened as it was so fast and we tried to cram in as much as possible around his treatment - needed some more good memories of our family's time together.

I want to pass on all the best possible hope and best wishes for anyone affected by this disease and know how hard it is for everyone affected by it.

xx

Hi all, particularly to the new passengers.

It's like another arrow in the heart when we get another boarder, this really is an awful disease. I can't help on the travel insurance, but it has been raised many times on here and there are people who know of the relevant companies, I hope one will be along to give some information.

Is anyone as disgusted as me about the lunatic monies involved in Monday's football transfers and the obscene wages paid to footballers? I have sent a message to Chelsea FC via Twitter, (whether it gets there or replied to we'll see) asking if they could afford a bob or two towards research into brain tumours and cancer in general, don't hold your breath.

Sorry I can't be of any help to anyone, but you do have my sincere thoughts.  Martyn.

Hi All

Jonesy we had the cheapset quote for insurance off 'All clear' but the cost was too great when H was still on treatment the quotes were approx  £1500 so we didnt go. Hope you manage to get a decent quote and get away.

Love to everyone DianneJX

Hi Jonesey, try MIA. They insured us at very reasonable cost, but only at 6weeks before departure, so we had to pay full cost of hol before insurance could be taken out.. Risky! But all went well for us. Mummaggie