We Talk Brain Tumours

Hi all, I don't post that often, but I do still read most days.

Sue- sorry to hear Paul is not so good, I hope the dex stabilises the worrying symptoms while they investigate.  Thinking of you xxx

SusiQ- I can't believe that about the driving licence!  What a joke!  Could anyone else complete the forms, like the consultant at the hospital or something?  It's so dumb because Col could've just kept hold of that licence and simply not driven (or driven I suppose, but you knolw what I mean, he didn't have to surrender it) and now he's being penalised for doing the right thing. Grrrrrr.  Do you think  small grant from Macmillan could be sought? 

Love to all xx

Hi Sue

Don't worry about ranting - you have enough stress with the illness and all these people do is add to it big time and give a double wamby wanting an exccesive amount of money from you.

When you are going through what were are/have it would be nice for someone to say - don't worry leave it with me and I will sort it for you - take a bit of the pressure off.

I am sorry but I don't have any knowledge with this one - Steve wouldn't let me give his licence up (taking bits of his life away) but from the day he was admitted in Exeter hospital in May 2009 he never drove again.

I eventually informed the insurance company and they said that it was fine provided he was responsible and didn't drive which he was anyway.

Could a welfare office help to fill in the forms for free and just get the doctor to sign them.

Take care let us know hoow you get on

Ann x

Just bringing back up.

Moving us up

Hello everyone,

Well the scan result yesterday was bad news. There is regrowth in the original tumour. I knew in my heart that this was happening but I'm still quite numbed really. The Oncologist told me to keep Paul on the max dose of Dex for a week and he will see Paul in a week to discuss treatment options. I don't think there many options, though. Surgery isn't possible so I suppose the only thing on offer will be PCV. I am going to read up on Avastin though and ask the Onc about that and whether more TMZ might help.

Feel so sad for my lovely brave man, He has taken this news totally stoically, as usual and doens't seem in the least bit fazed by it.

Sorry to be somewhat absorbed by our own sadness today. Hope everyone is doing as well as possible and that you all and your loved ones have a peaceful weekend.

xx

We had very similar news this week and have to go back next week after they have had a multi-disciplinary meeting to discuss what can be done. It's heartbreaking. After an op, radio and chemo its bigger than before the treatment started.

Feeling very down. Hubby in better spirits than me!

Hope others have had some better news than me and Susan this week.

Love to you all who understand  x

Tiggy, thanks for the reply and I was sorry to see that you also had bad news. It makes me feel grateful that at least the standard RT/TMZ regime did seem to work for Paul as we have had a couple of years now since the treatment and it did reduce the tumour.

Paul had me up at 6.30 am today. I'm always an early riser but he normally sleeps until at least 10 am and when he gets up he is usually quite groggy for a while. He is really "hyper" today and has a voracious appetite. He told me the reason he had woken so early was that he was hungry and wanted cornflakes. I assume it's the result of being on 16mg of Dex after being off it for a long time!

I spent some time last night reading up on Avastin and when we see the Onc on 31st Jan  I want to go along fully informed on what treatment options there might be. I am not very hopeful that the hospital would agree to Paul taking Avastin as he has a history of high blood pressure but I certainly intend to ask and also to see whether they would consider more TMZ. I want to keep fighting for anything that might help.

Good morning all.

I am finding thing site very confusing!!! But I think I have finally found the right place I want to be!!! If you have come across me anywhere else on here, I can only apologise for I have no idea what I am really doing!!

I am Cadee, 24 today!!! I had an anaplastic  astrocytoma, but finally managed to defeat it by the end of nov '10, however I am due a biopsy on tuesday on a lump in my groin! Worry is a prominent thing in my mind right now!! I did put a lot of info in my other post, but where I put that, I am not too sure.

So yes, that is me. Hi!

Hi Cadee

I spoke to you yesterday and yes you are now in the right place.

Keep reading and posting - it does seem a bit daunting at first and appear that we all know one another - I found it easier by clicking on peoples names and reading their journeys - helps to refresh your mind.

Sometimes posts get missed so keep writing/joining in.

Take care

Ann x

Hi Sue206

I am sorry to read that Paul's scan showed regrowth and please do not apologise for being absorbed in your own sadness - we all fully understand and you know that we are all here for you both.

Steve had PCV because he didn't like tmx on its own at the higher dose.

At first we did feel taht it kept the tumour at bay and upto the 4th cycle he was doing really well.

However, PCV is a harsh chemo and I do believe that the 5th cycle caused Steve all of the problems (albeit mobility was always against us) and becoming completly immobile didn't help us).

Paul has done really well so far so fingers crossed he will be offered TMZ again next week.

Sending you both a big hug and all my love

Take care

Ann x