Glioblastoma multiforme Grade IV

Mimmo Collina · New User Joined: 24 Oct 2009 Posts: 2

someone very close to me has recently been diagnosed as un-operable;
he is 32 and in the prime of his life just married last year.

we are 4 weeks from diagnosis, and 1 week into radio/chemo

we want to be as well prepared as possible for the eventuality that the tumour(s) will come back after the therapy. we are particularly interested to know if anybody has previously walked the minefield of medical-terms in search for their own picture of what treatments are available and how suitable they are to a given case, and where the best websites are to conduct this kind of amateur research.

any relevant information will be most gratefully received

my best wishes to everyone touched by this nightmare

brainman

Hi Mimmo,

I am very sorry that your friend has a GBMIV. I am sure you realize how bad this is. My mother only lived 2 months after her diagnosis but she was twice your friend's age with many other health problems. But I have only heard of one person that has lived more than a few years.

Nevertheless, as I often tell people, a prognosis is just a statistical number. I do like to know my prognosis but only in order to make some realistic goals for the things I want to do with whatever time I have left. Then I try to set my prognosis aside and just take one day at a time working to achieve those goals. I know, this is a lot harder to do than it sounds... especially at the beginning when your greatest concern it just to survive the treatments. This is where you can come in. You can be your friend's personal "dream factory". He might only be focused on the cancer. You can look beyond it for him.

You and your friend are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

Mimmo Collina · New User Joined: 24 Oct 2009 Posts: 2

thank you for taking the time to reply - i noticed you do this for every post and i think your efforts to help people are remarkable

I have a contact with Sloane Kettering - we are sending them the scans and reports in the hope that maybe surgical possibilities could be more advanced simply because the USA is larger and the doctors by definition will have had more experience with extremely complex cases. I would value your opinion on this.

seperately - for anyone with a GBMIV the below link may provide a ray of hope into their darkness

http://www.ozbraintumour.org/natasha.htm

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