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Glioblastoma Stage IV

cmanderson
Posts: 1
Joined: Aug 2010

Hi Friends...

I've just joined today so am new to this forum. I've read about half of the comments here under Brain Cancer and am both saddened that so many are suffering, and encouraged to hear survivor stories.

I was diagnosed with Stage IV Glioblastoma on July 19, 2010 after several days of throwing up and migraines. After the brain swelling went down I had surgery to remove a lime-sized tumor in the front right part of my brain a few days later. Although confidence is high that all of the tumor was removed, other MRI and CT scans show an inoperable tumor in the back right lobe of my brain, however, much smaller than the previous tumor that was removed.

I'm currently in my 3rd week in the Cilengitide trial (protocol), and just started my 2nd week of Temodar (7 days per week) and radiation (5 days per week). In reviewing other's programs on this discussion board and hearing people's reactions that this is quite aggressive, I've started to worry a bit about my survivability. I've not been given a time by my oncologist, but he has suggested some numbers (survivability rates) that are really low.

Up til now I've been extremely positive, even making up jokes to remain upbeat about things. However, most information I find when researching my disease has been depressing. I'm only 43 and had hoped to get a few more years with my young family before losing this battle.

I am doing everything in my power to increase my chances, including becoming a vegan, removing all sugar and caffeine from my diet (to make my pH balance more alkaline), exercise, prayer, and just about everything else I can do to strengthen myself physically, spiritually, and psychologically.

I also just started taking a homeopathic remedy called "Ruta 6". Although it is not a clinically approved approach to curing Brain Cancer, there have been some interesting results from early studies and would like to hear anyone's feedback on this.

I'm open to anyone's advice on how to best deal with the stats, and am currently looking for a cancer support group in North Eastern Kansas (Kansas City, MO) area.

God Bless.
Mike

MAJW
Posts: 2515
Joined: May 2009

Mike, I personally do not have glioblastoma.......but my best friend does....She just turned 50.....She was dx in Oct.2008......surgery (2), radiation, followed by Temador(oral). She has fought this diligently! She is now taking Avistan+ something I can't remember via IV infusion....I really have nothing else to offer you except my best wishes and prayers for you and your family....It might be worth your time to contact Duke University Hospital in Durham, NC....Dr Henry Friedman, is one of the foremost Nuerologist dealing with Glioblastoma Multiform Stage IV......

I wish you peace

tommybear
Posts: 112
Joined: Oct 2009

Glad that you found this network. You will find some amazing people on this site. I was diagnosed with a grade II astrocytoma last year, had surgery and stereotactic radiosurgery and am doing pretty well so far. Anyhow, I thought that I would also let you know about another network that seems to have a lot of GBM IV people on there - it's on CancerCompass on the message board - just have to go to "brain cancer".

I am on this network and the other one daily - even if it is just to read what people have to say and what people are feeling.

There are some fantastic stories that will help uplift you. There is one gentleman who I know of that is a 13 year survivor of GBM - David M. Bailey. He is a musician and has a very cool website that you might find interesting.

So, welcome to the network! Wishing you peace!

Michele Stevens

Mr. Myers
Posts: 3
Joined: Jun 2010

Hello Mike,

I am also a 43 year old who was diagnosed with Stage IV Glioblastoma on Jan 29, the day before my birthday. I had two small tumors, one was operated on, at UAB in Birmingham. The second tumor is small and does not pick up dye in the scans so my doctors are trying to remove it with Radiation and Temodar.
I am currently on my last round of Temodar am feeling good. Like you, I plan on "increase my chances, including becoming a vegan, removing all sugar and caffeine from my diet (to make my pH balance more alkaline), exercise, prayer, and just about everything else I can do to strengthen myself physically, spiritually, and psychologically." There was a recreant article on there put out the MDA about these very things to help your survive.

Do not give up your positive attitude! I think it is the best defense.

I don't look at stats, every GBM is different, plus you and I are young! To me it sounds you are doing all you can, keep it up!

Thanks for your post... I wish you the best.

Erik

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Erik, that has to be the creepiest avatar I've ever seen on this site, despite the rubber duckie ;D That's creepy in a good way!
Glad you're getting through this.

@Mike, please run whatever you're taking by your oncologist. Good nutrition is one thing, adding an unknown quantity to the Temodar you're getting is another. Good luck to you,
stayingcalm

Mr. Myers
Posts: 3
Joined: Jun 2010

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