One patient with glioblastoma still alive nine years later
by Koiri on Mon Jul 02, 2012 09:06 AM
Hi all, this is my first post and if I sound clueless it is because I am. My little brother got diagnosed with GBM IV a few weeks ago. He's only 27 and very depressed about this. Doctors don't want to go for a surgery because of location of the tumor. Right now my brother is undergoing cancer-treatment and copes badly with it. But he's brave. Family is a big support and I try to help as much as I can. But the more I read about this disease the more I'm afraid and scared if I can really handle it. I only slowly get a glimpse of what is to be expected. I'd love to hear from others how they cope, what I can do and what I have to expect in the worst case.
I feel so helpless and uninformed, are there any blogs out there from other ppl dealing with GBM in their family? I'd like to get any input I can get!
I'm asian, if my english isn't perfect, I'm sorry. I try not to make too many mistakes!
by kim55 on Mon Jul 02, 2012 11:41 AM
My husband got his diagnosis almost 21 months ago. I have never been so shocked or saddened by anything in my entire live. He could not have surgery due to the area of the tumor, but we went to the best place we could for treatment. Johns Hopkins brain cancer center. That's 7 hours away from our home. Anyway, they treated him aggressively with chemo, and radiation, and we came home after 7 weeks. He was placed on temodar (chemo, pill ) and the plan was to use this for 6 months. His platelet count kept dropping so chemo was stopped. He hasn't had any treatment since March 2010, and only by God's graces has his tumor been stable. Each and every MRI we go for, (every 2-3 months) makes me a nervous wreck. His prognosis was only 18 months, and we are still doing ok at 21. I have to ask God for help each and every day, because I cannot do this alone ( I am his sole caregiver). I not only ask Him for help, I ask to feel his presence and his arms around me. I wish you all the luck in the world, GBM is a monster, but please do not try to do this on your own. God is there for you and your brother just ask him for strenth and wisdom and you will see a difference in your life.
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