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Newly diagnosed with GBM

mackem12
Posts: 1
Joined: Aug 2005

Hi, I’m Chris, I’m 24 and I’m from England. On 5th August, I discovered that I had a GBM. This did not come completely out of the blue and so is not a massive shock to me- no tears or anything like that, although obviously it wasn’t news which I wanted to hear. I was first diagnosed with a mixed oligoastrocytoma (II/III) four years ago, at the age of 20, and realised this could recur one day so it is something I have always been prepared for. I found out in July I had a tumour which had been growing quickly over a period of 3-4 months. The neurosurgeon estimated he could remove 90-95% of this new growth (which he did 3 weeks ago) and I've just had an MRI scan to find out what’s happening in there. The neuro-oncologist is extremely positive and we agree that I have an abundance of factors in my favour. He is keen to start me on temozolomide as soon as possible.

As I look at it, I have two choices: be positive or be negative. I’m taking the positive option- I have too much going for me, too much to live for and so much I want to see and do. And which I will do.

I’ve been looking on the internet and have found numerous useful sites and truly inspiring stories which give me hope, strength, belief and courage. I would be extremely grateful for any advice/help/support anyone might be able to offer. I am looking to see what I can learn, what things have helped others etc. I’d also appreciate it if anyone could pass on anything at all which you have found useful e.g. diet tips, exercise regimes, complementary therapies or supplements.

I realise that this is the beginning of a difficult journey for me but it is one which I will overcome.

Thanks in anticipation for any help you can provide and I sincerely look forward to hearing from you,
Chris Snaith
chrissnaith80@yahoo.co.uk

Book2
Posts: 1
Joined: Aug 2005

Chris, I'm with you on the positive attitude but I also am adding exercise and good a nutritional diet to include high protein. I was diagnosed on 7/20/05 with a GBM stage IV. I just started my third week of radiation and Temodar. I had surgery on 7/21/05 and they removed 85%. No side effects from the surgery. I feel as though I have alot to be grateful for. I'm told that the Temodar has had good results. I have been tolerating the Temodar well so far. I take Compazine for anti nausea 2 hours after dinner, then an hour later the Temodar. I refuse to listen to statistics because I believe that every person is different and every person handles the treatments differently.

I wish you well. I hope some of this will help.
Elyse

jbb's picture
jbb
Posts: 14
Joined: Apr 2005

Hi Chris! Welcome to a great site.
I am Jennie, I was diagnosed with GBM IV in dec 04, I am 26 and I also live in England. I have had a craniotomy in dec and radiation 30 sessions in feb/march. So far I have not begun taking any chemo. I had an eggsized tumour in my right frontal lobe beside the trigonum. Everything seems to be "sleeping" at the moment so I have decided to wait with the chemo until nessecary, until then I live life to the fullest with my five year old daughter.
I do a lot of swimming and breathing exercises, the only way I could make my mind clear enough for that is to do them whilst swimming, I have a special rhytm in the pool. I also do loads of juicing, good tips and recipes in Leslie Kentons Raw Energy. I eat fully homecooked food, no precooked. If I desperately need some salty licorice or an ice-cream I go for it though, you can not give it all up. I do not drink unless it is a ridicoulus expensive champagne, then I enjoy it to the fullest, since I am currently on no meds whatsoever.
This tumour is a monster, yes, but we can not allow it to take over our lives completely, it does not change what we still have to be happy about. So let us rock this life.
Cheers, Jennie.

AuthorUnknown
Posts: 1564
Joined: May 2006

Jennie, Hi I live in New England. I had brain surgery on August 23 05, and the biopsy came back as GBM IV. I began chemo and radiation two weeks ago, but don't know what to expect. The chemo (temodar) is not bad. Minimal side effects and easy to take at home with a pill.

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