New to the Forums

breakself · Posted: Sun Mar 22, 2009 10:34 pm Post subject: New to the Forums

Greetings to all of you entrenched in this fight.

My name is Aaron, I'm 28 years old, and I have an inoperable stage IV GBM brain tumor. After the initial diagnosis last June, I was put on a daily regimen of radiation and temodar for several weeks before beginning a series of Avastin treatments. Currently, I'm receiving monthly Avastin treatments along with a 5/30 temodar schedule. I'm supplementing these treatments with a macrobiotic diet, daily doses of flax oil, chia seeds, goji berries, methionine caps, and a new over-the-counter med called Neuropathy.

So far, I've responded reasonably well to the treatments with few side effects. I've tried hard to remain optimistic, but find that it's difficult (perhaps impossible) to go a day without thinking of the likelihood that I'll be dead before I'm 35. I suppose I don't know what else to say, other than that it's nice to know that I'm not alone in this. So, thank you to everyone who has had the courage to share their stories, their tribulations, their tears, and, of course, the bright moments, rare as they may be.

I'm not sure to what extent I'll be present on the forum, but I'm out here, struggling like the rest of you.

chatterboxgayle · Posted: Mon Mar 23, 2009 2:15 pm Post subject: Re: New to the Forums

Hi Darren,

So sorry to hear about your cancer. I also have a GBM IV but unlike yours, mine was operable. I've gone through the surgery, radiation/chemo for 6 weeks, and 6 months of chemo. It's been a year, almost to the day, since my surgery. So far I've responded well to the treatment but it becomes a day by day existence. After awhile I learned to make the most of the situation and try to live to enjoy each day. I'm so sad to see that you are so young - I am 55. I also monitor the web site on a more or less daily basis. Strength comes from every one of the members here - please keep us posted. My life has changed but with the change and all the sadness also comes some incredible love and support from my friends and family. I go by this mantra: "I need the strength to be something that I am and nothing that I was".

Lots of hugs,
Chatterbox (Gayle)

chatterboxgayle · Posted: Mon Mar 23, 2009 2:17 pm Post subject: Re: New to the Forums

And I see I called you Darren instead of Aaron - sorry for the error! I always say I'm brain-damaged when I make those kinds of mistakes - my friends just go along with it lol. Anyway, so sorry...I won't make that mistake again hopefully!

Gayle

lightningbolt1984 · Posted: Mon Mar 23, 2009 2:27 pm Post subject: Re: New to the Forums

[quote="breakself"]Greetings to all of you entrenched in this fight.

My name is Aaron, I'm 28 years old, and I have an inoperable stage IV GBM brain tumor. After the initial diagnosis last June, I was put on a daily regimen of radiation and temodar for several weeks before beginning a series of Avastin treatments. Currently, I'm receiving monthly Avastin treatments along with a 5/30 temodar schedule. I'm supplementing these treatments with a macrobiotic diet, daily doses of flax oil, chia seeds, goji berries, methionine caps, and a new over-the-counter med called Neuropathy.

So far, I've responded reasonably well to the treatments with few side effects. I've tried hard to remain optimistic, but find that it's difficult (perhaps impossible) to go a day without thinking of the likelihood that I'll be dead before I'm 35. I suppose I don't know what else to say, other than that it's nice to know that I'm not alone in this. So, thank you to everyone who has had the courage to share their stories, their tribulations, their tears, and, of course, the bright moments, rare as they may be.

I'm not sure to what extent I'll be present on the forum, but I'm out here, struggling like the rest of you.[/quote]

Hey Aaron,
I'm 24 years old and was diagnosed with a stage IV GBM when I was 22. There isn't a day that goes by where I don't think about the same thing and I think it can only be natural. So if you want to read my story I'm sending it to you as soon as I hit the submit button.
I don't consider myself to be some kind of guru with the best advice ever, but I want to tell you that I went to MD Anderson in Houston, TX and they were absolutely amazing there. This will sound really stupid, but I think laughter truly is the best medicine.
-Owen
_________________
Statistics don't mean anything to me or you. They are just for people who don't know anything....and doctors.

madonnav · New User Joined: 24 Mar 2009 Posts: 3

OMG- you are both so young to endure this nasty disease. You both sound like such strong people. Keep up with all the new treatments as they come along. I pray with as young as you are a cure is found. Keep you sense of humors, live each day as it come and stay strong. Thoughts and prayers to you.

breakself · Posted: Mon Mar 30, 2009 6:32 pm Post subject: Re: New to the Forums

Thanks to those of you who have reached out and commented on my or your own experience with GBMs. I'm in Palo Alto right now. I just finished my 8th (9th?) Avastin treatment and am feeling pretty okay.

Last Friday I had another scan, and the oncologist seemed reasonably pleased that the tumor's growth has, for the time being, stopped. He was also kind enough to show comparison slides of this most recent scan and the ones taken 7 months ago. Wow! What a difference. I can still remember seeing the scans from last September for the first time and thinking to myself that there was no way I'd make it even another few months. A positive outlook and a network of deeply supportive friends and family really makes all the difference in the world.

My thoughts continue to be with those of you who are experiencing the truly dark side of this condition. Keep your heads up whenever possible, and don't forget to tell your loved one's how much they mean to you.

till next time,
aaron

Tammy · Posted: Tue Mar 31, 2009 11:54 am Post subject: New to the Forums

Hey Aaron

First of all I feel for what you are going through, and I hope all is well with you today. I sense you will find a great deal of comfort here on this site. There are so many people willing to offer their support, and most of all sharing stories, whether the stories are good or bad, it helps a great deal to know we are not alone. I know most of the time I seem to find a story or something on here when I am really in need of it. I have a hard time talking with people face to face about my fears and struggles. I do have a husband and VERY caring family/friends, but it's not the same when you are on the other side of the wall from them. Try your best to keep focusing on the future thinking ahead and keeping your dreams alive, so easily said I know your probably rolling your eyes right now...LOL Rolling Eyes

but I am going to tell you it anyways! Keep your dreams alive, live for you. Every day you wake tell yourself something positive, it helps some, not always but it does help. Wink

By the way my name is Tammy and I tend to let loose on here, I ramble allot as you can see, but that's me!..LOL...
Its so nice that you have found this site, and welcome to the family Wink

~*Tam*~

~Life isn't about waiting for the storm to pass....It's about learning to dance in the rain.~

Never take someone for granted
Hold every person close to your heart
because you might wake up one day
and realize that you've lost a diamond
while you were too busy collecting stones.

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