We Talk Brain Tumours

Hi IMWIWA

Firstly, although I don't know you I feel compelled to say:

HURRAY!!! YAY!!! WOOP!! WOOP!! BIG HUGS! BOTTLES OF CHAMPAGNE! PARTY PARTY PARTY!! BELLS! WHISTLES! DANCING GIRLS! MAYBE SOME CIRCUS ACTS! NOT CLOWNS THOUGH. HAVE I GONE TO FAR? SORRY. JUST HATE CLOWNS. BUT YOU GET THE GIST. 

I can't speak for anyone else but personally I love to see good news on here! It gives the rest of us so much hope and, as I'm beginning to find out, in this situation, hope is a pretty powerful medicine. 

My hubby has Grade IV GBM and, last week, was told his tumour has shrunk - he's still on the phone telling people now! He flew up to Cloud Nine as soon as he heard and hasn't come down yet!

That's brilliant news and will keep me smiling all day long. So thanks for sharing and giving us all hope. 

Pam

x

Thank you for your replies, your all wonderful people and please never ever be sorry about posting great news!

Keep strong

Hi De Hi folks, remember me!!!!! Sorry not been around and only just read the last few posts as time is of the essence lately with me, so bloomin busy!

Illowe, my tumour was grade 2 on the turn to a 3 (or even just a portion could have been a 3) and as such I was treated aggressively as if the whole thing was a 3.  I did not have combined RT/chemo but RT alone, in two stages the first around wide margins of the tumour site (even though I had a total resection) and the second was zapping more directly at where the tumour had been.  I had six weeks recovery and then started six cycles of TMZ, which I was given the option of having then or later.  Figured I would have it while I was still fit and healthy (ha ha) rather than trying to cope with the side-effects when I was already in decline.  Personal choice of course.  I had MRI's every 3 months for a while, then it went 6 monthly and then last Feb 2011 my oncologist suggested yearly (bit scary that) but I see her every 6 months, next one is due Feb 2012.

Different Drs and hospitals seem to vary the treatment slightly but I am confused that the 'nurse' said she wouldn't call the tumour a grade 3......I may have missed an earlier post but I am assuming they have actually given Justine her tumour type and grade by now???

I am doing OK a few headaches but boy have I been stressed, daughter still playing up at school (I have to learn to accept she hates school and will probably always rebel against it, unlike her two brothers).  My dog had to have a tumour removed from his mouth, we were so very lucky it wasn't cancerous as 9 times out of 10 it is, but it cost us £350 3 weeks before Christmas, yes we can claim it back, but we won't see until 2012 and it's really put a dent into the money we had put aside for presents (like almost most of it).  Ah well, satsuma's & wallnuts it is!!!!!!!!!!

Sending love & strength to all who want or need it xxx

Feeling quite sombre today.  It's been a month.

HUGS especially for Debs and Pete xxxxxxxxxxx

Hi Debs

No this is the confusing thing. The Dr at Queens said its not malignant but it is but it is terminal!!! It was only the nurse who walked in not 10 minutes later and said if it could be graded a 2 1/2 , 2 3/4 then they would but they cant so its a 3!!! This also led to my brother- in -law and dad becoming very annoyed as she had basically told them it was cancerous but the Dr never, but then again this was the same Dr who's side kick told my sister it was a Grade 1 (just based on the MRI). Chemo was a last option (for the Dr at Queens) and only Radiotherapy was going to be offered but then when she finally went to see the Radiotherapy man at Colchester he said he wants to check the tumour ( the bit she had removed during surgery) and if it has these certain cells then he wanted to start Chemo, these results came back on the thursday before she started the radiotherapy on the Monday.

She was told by the nurse that it was a Grade 3 - anaplastic astrocytoma, like i said the Dr sat on the fence and left it to the nurse. This is why i am so confused.

Anyway my sister said today that she's disappointed with her treatment plan but if it gives her any length of time longer then she'll do whatever they say.

Sending my love to you Pete x

Thanks Pam. I was quite chuffed. "IMWIWA" I haven't thought if it being written like that. I like it - reminds me of that chorus of "The lion sleeps to night" - IMWBAWAY, IWIMBAWAY". I have to say, I'm with you on the clowns but maybe the dancing girls please? I now have a mental picture of Pan's People dancing to "in the jungle, the mighty jungle, etc ..."

Brilliant news about your husband too - I'm with you:it is good to hear happy news some times.

Pete - I never know what to say in these circumstances because it'll come out wrong. Just to let you know that we do care for you.

Oh man, that sounds so very confusing and I would almost certainly be very frustrated at the mixed messages.

My advice would be to talk to your Mac nurse about the confusion and see if you can't get a straightforward explanation.

It might also be worthwhile to get in touch with the hospital's PALS team (patients advice and liason service) as you deserve to have clear, straightforward information of the condition in terms that you and your sister understand.  It's clear that the confusion is causing you both undue stress.

If you're unhappy with the service that you're getting, you can ask to be referred to someone else who is able to give you a coherent explanation and treatment plan that you both understand and trust in.

You deserve better.

Hi llowe,

I was writing a message when I notice Pete's reply - he is bang on. They need to tell you what's going on. Crossing my  fingers for you for Thursday.

BTW - I refuse to believe that a Grade 3 - anaplastic astrocytoma is terminal. Mine is going in the right direction so no reason why your sister's can't. What the heck - something will get us in the end. I don't intend it to be for a while yet.

xx