Sharon1
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Registered: 12-2003
Posts: 468
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OLD TIMERS, NEW TIMERS AND SPECIAL THANKS TO MARGIE AND LEAH
Hello everyone....It is VERY sad to see that this board is NOT used....as IT CAN BE A GREAT BENEFIT for people living with loved ones who are battling brain cancer. When it was first started by Leah, the results were amazing. Leah did a great job creating this board and Margie took over, doing a great job as well. It was so popular that some of the girls even met at a centrally located city. Everyone here has a connection... no one "wants" to be on this horrific tragic road of life but it is, what it is...and this board offered a lot of support.
This board was so comforting, informative and caring for me when my son was dx in 2002. He survive 6 1/2 years, and he was expected to live 3 to 5 years....no one really knows except God.
Even though I wasn't "a spouse" but instead a mother, who's not in the same position as the rest of the board they accepted me with open arms. When I was extremely down they had comforting words....I can't begin to say how much support they were for me during this horrific time in my life!!!
I sincerely hope more people will find this board and that communications and helpful friendships will again develop. Most of us that were originally on this board when it was so active have lost our loved ones. We would like to be of help to others, but have not kept up on the latest chemo's and treatments, so we are "out of the loop". Hopefully some like me, come back and try to check up on people and be supportive, although I have to admit that I have neglected it for some time because of current life situations (mom had a stroke, daughter has health problems, and I had a 2nd back surgery and am now on disability).
I will try to check the board more often...and lend an ear to someone in need.
Well this ended up longer than what I was planning...we'll see if anyone actually reads it to the end. lol
May God bless you all and give you strength and comfort and HOPE !!!!!
Thoughts and prayers are with you all.
--- Mother of Jason (married-30). 9/2002. dx oligliodrendroglioma. Surgery,(procarb.) chemo, rad.Surgery/temodar.2008-seizure, Oct '08 Avestin/CPT11. 3 1/2 mo's of treatments-hemmoraging.Passed away3/01/09, I miss him so much.
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2/26/2014, 12:41 am
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cindy g
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Re: OLD TIMERS, NEW TIMERS AND SPECIAL THANKS TO MARGIE AND LEAH
hey Sharon...I popped back on here because of your message! I hope that people will post on this board too & maybe update us on what the newest treatment are and how they are doing.
For those new people on here, I've been a "member" since 2002, when I found out about my husband's brain tumor. He was dx'd with a grade 3 oligodendroglioma. He had chemo & radiation. His MRI's have all been stable since treatment ended in 2002. He finally had to go on SS disability in 2011 due to memory issues plus he has occasional seizures.
He gets an MRI done once a year now.
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2/27/2014, 7:16 pm
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Sharon1
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Re: OLD TIMERS, NEW TIMERS AND SPECIAL THANKS TO MARGIE AND LEAH
Hey Cindy!!! I am so glad that Bob is doing so well!!! And it has been great hearing from you!! This board was so GREAT when it first started!! I really hope that people in need start coming here and sharing their knowledge...for me it was so helpful to chat with people dealing with the same dreadful disease...to which there are really no right answers for some of it, but yet is so informative, especially to people recently diagnosed. Seems like when your first told EVERYTHING IS TOO OVERWELMING...AND YOUR WORLD IS JUST CRASHING DOWN. You were very supportive to me Cindy, and I will always remember that.
--- Mother of Jason (married-30). 9/2002. dx oligliodrendroglioma. Surgery,(procarb.) chemo, rad.Surgery/temodar.2008-seizure, Oct '08 Avestin/CPT11. 3 1/2 mo's of treatments-hemmoraging.Passed away3/01/09, I miss him so much.
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3/4/2014, 5:04 pm
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JulieS4
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Registered: 12-2006
Location: NJ
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Re: OLD TIMERS, NEW TIMERS AND SPECIAL THANKS TO MARGIE AND LEAH
Hi Everyone,
I actually had an hour to myself tonight and thought I'd check the board...I haven't been on in a really long time! I started on the board in 2006. My husband has recurred twice since then, the most recent the past fall. He is doing well -- very minimal deficits which is amazing and has a great attitude. He has tumors but they haven't grown since he started taking temodar in November. This is his 3rd time taking temodar but the first time with active tumor growth. He'll stay on it until we find something else or until it stops working! This board helped me so much in the beginning. I remember searching for those who made it past the survival rates. My husband is one of them -- he's an 8 year survivor now!! I hope this gives someone reading this board some hope. It isn't easy but it really teaches us to treasure every moment.
--- Julie S.
w/o Scott (40) dx. 9/2006 AAIII - surgery, radiation, 6 mo. of chemo. tumor recurrence - gbm 9/2011. Bone flap removed due to infection. Another 12 mo cycle of temodar. Two kids - ages 10, 8
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3/14/2014, 4:35 pm
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cindy g
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Re: OLD TIMERS, NEW TIMERS AND SPECIAL THANKS TO MARGIE AND LEAH
Hi Julie! I'm so glad to hear that your husband is an 8 yr survivor!!I hope that the temodar continues to work for him.
As always, remember to take care of yourself,too!!
((hugs)) to you!
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3/18/2014, 2:14 pm
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