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My dad has Gliblastoma Multiforme

msduncan
Posts: 1
Joined: Jul 2012

My dad who is 67 years old and otherwise healthy, started complaining of headaches and 3 days later he passed out in the yard, after getting him to the hosptial it was found that he had a mass on the brain, after the initial biopsy we were told that he has Gilblastoma Multiforme, I am schocked and confused. the doctors are saying that this form of cancer will never stop growing,he had a surgery to remove the tumor and will start radiation and a chemo capsule called temodar. I dont know what to expect or what to do. I am a only child, my mom passed away when I was 4, and it has always been the two of us. if anyone could tell me what to do, or what will help, please I need help. Thank YOU

Klofquist13
Posts: 3
Joined: Jul 2012

Your post has inspired me to join all the brave people on this site. I have been lurking since earlier this month and reached out thru private messages to a couple amazing women who have already helped me gain the extra oomph I needed as my husband has GBM multiforme grade4. My hubby turned 33 in may and had his tumor resection on may1st. What a whirlwind of information, medication, med terms, doctor appts we now find ourselves in?? What to expect? Well, it will change daily. Overall, with the radiation and temodar, my husband tolerated really well. He is not working, but has continued doing daily activities round the house. Anything he gets done is a successful day. Fatigue is the main side effect Greg is continuing to fight thru even though he has finished his 6 weeks of chemo (temodar pill) and radiation. He lost most his hair around week 3-4 but is sporting a nicely shaved head. Greg only experienced nausea and vomiting two days of all the therapy. Doc prescribed a sleeping pill and anti nausea pill to take 1/2 hour before chemo and then go to bed. If your dad is on the steroid decadron he will like to eat a lot hopefully (never hurts to put on a few pounds incase he gets sick) but the longer he is on it he may have trouble sleeping or relaxing. We have noticed some personality changes on this medication. We found it comforting to go to radiation each day and felt like we were doing something to attack this horrible disease. We still went camping and four wheeling as normal. We have a young son to maintain normalcy for. We continue to work our lives around Greg resting and try to do things we always did before. Finding your new normal and your dad's is the next step. I pray he feels good throughout the upcoming therapy for him and you. He might not know to tell you but he is very lucky to have you and hang on to everyday one day at a time. We were told at diagnosis that we signed up for a marathon we hadn't trained for and that could not be more true. Take care of yourself and recruit anyone you can( neighbors,friends) to stay with your dad as needed so you can have some "me time". I go get a pedicure every few weeks just for me! I hope this helps paint a picture of what is next and hang in there!

manwithnoname
Posts: 390
Joined: Jun 2012

http://www.brainlife.org/reprint/2008/williams_ba080920.pdf

HOIBC
Posts: 3
Joined: Jul 2012

Hello, I had surgery in May 2012. 99% resection. The pathology results took forever almost 8 agonizing weeks. Then all I was told was that it is/was grade 4 glioma.(oligo/astro I found out from reading a lab requisition I was given). Not exactly the same as GBM but similar inbehaviour. ie. 100% incidence of recurrence eventually. The surgeon led me to believe I'd be lucky to have 1 year. No deficits before or after surgery and good general health at 59. First visit with the Rad. oncologist is next Tuesday so I hope to hear something more positive from him. In the meantime your stories give me hope when I was on the verge of losing it in more ways than one. Thanks again. I'l be back after Tuesday hopefully with a lot more information. PS I'm in Canada. Does anyone know if the treatment protocols are the same here? So far all the info I've been is based on treatment in the US. I've read that some treatments disqualify a person from some clinical trials. Does anyone else have info on this? Bye for now.

amsan1724
Posts: 7
Joined: Jul 2012

Ms. Duncan: My sister was diagnosed on May 29, 2012. She is being treated at Siteman Cancer Center in St. Louis, MO. There is a new procedure called the Auto-LITT being done at Siteman in St. Louis and at the Cleveland Clinic (Dr. Barnett). Since her tumor is in the thalamus and is very deep, surgery for removal was not an option. The Auto-LITT is a laser that "cooks" the tumor so that it shrinks (ablates), hopefully in order to make chemo and radiation more effective. The doctor (Eric Luethardt) said he shrunk 99% of the tumor. She will begin chemo and radiation on July 26. She has weakness in her right arm and leg and speech deficiencies, but is being treated at a rehab institute. She will come home in another week or two. We are just beginning this journey and I have heard many terrible tales about this "ugly actor" of a tumor. I would love to hear more success stories from longer term survivors. If you are close to Cleveland Clinic or St. Louis, perhaps you can get some information about the Auto-LITT and see if your father is a candidate for it. We have started a Facebook page for prayers for my sister and have had a good response. Best of luck to you and your father. My thoughts and prayers are with you.

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