Glioblastoma

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Glioblastoma

by Marmiedee on Tue Feb 22, 2005 12:00 AM

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Hi, my husband who is 58 years old was diagnosed just under a month ago with a grade 1V glioblastoma. He underwent surgery at Loma Linda Hospital on 1/28. THey were able to get all of the tumor and he came home just two days after the surgery and has even returned to work. I thought this was good news until I saw the long faces the doctors have had. He starts proton radiation and chemo in one week. The information we have received has been so bleak that it is difficult to stay positive. We went to the City of Hope in L.A. to discuss clinical trials after the initial treatment. They were very nice and helpful there, but the prognosis remains bleak. Any help or advise would be greatly appreciated. I am of course devastated and feel pretty helpless. Thanks. Patty

Take Heart, Patty

by Jeanne_e_d on Fri Feb 25, 2005 12:00 AM

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Dear Patty, My husband (60) was diagnosed with gbm4 nine months ago -- the same week we were married. The tumor was inoperable but he's had radiation and chemo. He has some problems -- can't read at all, has difficulties with his vision, thought processes, and language -- but he keeps on going. Yes, this is an unspeakable illness, and you are right to be frightened and devastated. HOWEVER, although the prognosis isn't good, you CAN have some good times left, and you will find ways to cope. There are support groups, information sources, wonderful doctors and nurses, therapists and amazing amounts of love out there. And remember that he's still alive now. My husband and I have had several wonderful vacations (and are off to Hawaii, with luck, in two weeks) and spent time with our families and friends, and had beautiful dinners and watched movies, and fought and cried and laughed together. Please, ask me and others anything you like -- get connected and stay strong. You will be amazed at yourself, I promise. Jeanne

Hi Jeanne

by Marmiedee on Fri Feb 25, 2005 12:00 AM

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Thank you so much for the encouraging words. My husband started Proton Radiation yesterday and begins chemo on Monday. I feel very lucky because they were able to remove the tumor and he has very little deficit so far, just a little weakness in his left leg, which is improving. He has returned to work and plans to hang in there as long as possible, mostly for fear that he will lose his medical insurance. I agree that every day, every moment is precious these days. My husband is pretty amazing in that he remains very positive and determined to fight to the end. Thanks again for your support. Patty

i Know How You Feel

by Trish_g on Thu Mar 24, 2005 12:00 AM

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Patty--my husband also was diag. with a grade 4 GBM on October 31, 2004--I can only tell you that I do know exactly how you feel-frightened, angry and still not beleiving what is going on--my husband finished radiation and temodar-a chemo drug about a month ago-what kind of chemo are they talking about is it temodar? The GBM is suppose to respond well to both but in my husbands case it did not-we too are going to do a study at NIH in Bethesda Maryland in about 2 weeks. Patty your husbands tumor was operated on-my husbands is inoperable-so I think you should hope for the best the Temodar and radiation has stopped these tumors and even shrunk them so I pray that is the case for you-But do not waste anytime getting into a study one high dose of temodar after the initial radaition and low dose temodar should show some results-The study we are going to be involved in is the LY#####-the results from the 100 people on it is sofar ecouraging-in most cases the tumor stopped growing and some have completely shrunk- I understand

Glioblatoma

by Jan42006 on Fri Feb 03, 2006 12:00 AM

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Patty, I have also been diagnosed this month with glioblastoma. I would like to have someone to talk to who is going through the same thing. I realize it is your husband and not yourself who is going through it, but it might help to talk. My e-mail is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if you feel like writing. Sandy
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