All Glioblastoma Grade 4 messages

Newmom

Hi, My 76 year old father was diagnosed in September with a GBM in the Parietal Lobe. He has gone through radiation and has IV chemo every 6 weeks. The doctors told us in the beginning he would live 6 months to a year. No one wants to tell me what the end may bring. I am 4 months pregnant and would like to hear the best and the worst from someone who has been through this.

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Bet19

My husband (58) currently has a stage 4 glioblastoma multiforme (inopberable) and it has been 9 months since diagnosis. They gave my husband 9-12 months and with chemo 15. He was doing well until his 7th month and that MRI showed the tumor had grown the first time since dx in April. So then they changed to an older chemo BCNU IV. It has more side effects than the oral temodar chemo. My husband will have another MRI 2/18 to determine if this new chemo has worked. If the new doesn't work then our oncologist says there is one more drug we can try and then it is on to experimental treatment if my husband can qualify, he may not due to parital loss of left leg mobility. He walks with a brace and walker now. As far as the end goes, we have been told my husband my die of resp arrest or severe brain hemmorrage as the worst case senerios, but more than likely he will just get more and more tired and then slip into a coma. His tumor is located near the brain stem which controls mobility, respiration and near the occipital for eye sight. Currently his only complaint is pressure and occasionally a little pain. His left eye sight is also affected so he can't always see what is happening on that side. Our prayers are with you. In our area I know of 4 people with this type tumor. A 16 year old died last spring, another is an oral surgeon in his 50's still here and given 3-5 years because he had surgery and another man in his 50's whod didn't make it out of recovery after surgery. If we could keep our loved ones alive for several years there are so many new tx that could be availabe for cure. bette in marquette, Mi

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Newmom

Bette, Thank you for responding so quickly. I am sorry to hear about you husband. My prayers are with you. Is he in good spirits? My father seems to be handling this very well. Denial - I guess. We visited his oncologist yesterday and he feels the tumor is growing rapidly, although he has been taking BCNU IV. We have an MRI scheduled for 2/16/05. He is having trouble walking now, because he is still taking Decadron for swelling. It is amazing to me that he remembers eveything and can hold extensive conversations. Besides the fact he has no hair, you would never know he had a tumor. Last Friday after Chemo he fell outside the cancer center and hit his head on the blacktop. He had to stay in the hospital overnight. I know that he will continue to fail, and that makes me feel helpless. Please keep in touch. I am 28 years old and an only child. My friends can be sympathetic, but they do not understand. Paula from West Chester, PA

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Lindal

Paula, My father was diagnosed in October with GBM grade IV, after first being misdiagnosed as having a stroke. He was given 3-6 months with treatment of radiation and oral chemo (Temador). Sadly, he passed away January 30th. I suggest you contact Hospic to help the family out. They were a blessing to my family. My father slipped into a coma on Wednsday and passed away early Sunday morning. He passed peacefully surrounded by his family. My prayers are with you and your family. Linda

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Joenlea

My husband was diagnosed with stage 4 Gbm this past November, We have been very fortunate so far, as he hasn't lost any physical or mental function-ability. We are all at a loss as to how this happened.He hit his head at work one day, causing a large gash in his head. His co-workers took him to the ER, where they did a CT scan, gave him a couple of staples and a diagnosis of a mild concussion and sent him on his way. Three days after the staples were removed we wound up in the hospital going into emergency surgery for two tumors found in the left parietal lobe. My husband is now in treatment at Sloan Kettering in NY. He just finished up with his lifetime allotment of radiation for the brain. We had temedor therapy in conjunction with the radiation, now he starts the high dose temedor. We go on Wednesday 2/16 for the first MRI since the surgery. My Grandfather just sent me a really interesting article on Brain Tumor/ cancer treatment, that was really interesting. In it they mention the Intra-arterial treatment. My husband originally went through this treatment, but discontinued after his first treatment due to the lack of (or really scary)care given by the staff after the procedure. The team that did the procedure was great, it was the after care on the cancer unit that really put him off. If your interested I will try to get you the article. God bless you and your loved ones, I am praying for all of you. Lea

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Joanne

My husband too has glioblastoma, he was diagnosed in October last year and was told if he had radiotherapy he would live 1-2 years. After his allotted 4 weeks of therapy he became very muddled and poorly and was admitted into hospital and was given another MRI scan. It showed the tumor had grown 6cm in a matter of three months and we were told to go home and get his affairs in order as they could not guarantee he would make Xmas, as they only gave him a few weeks to live. Well he made Xmas and is still here going well. He has trouble with the sight in his right eye and his right hand doesnt have much strength but other than that is is fine thanks to a higher steriod dose. We have been taking him to have alternative treatment as well, it is called electo magnetic therapy and he has,not deteriated at all, in fact family and friends are amazed at how well he looks. I dont know wether it is a coincedence or what but something is working for him and long may it continue. His positive attitude I have found has also worked wonders and he is determined to reach his 50th birthday on the 29th April this year.

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Manubabe

Hi, my mother in law was diagnoised in Oct last year with a Glio in the right front temperal lobe. I took her into the ER because I thought she had a mild stroke down her left side. Unfortunately the CT scan revealed more. She had a craniotomy 36 hours later and since then has had 7 1/2 weeks of radiation and has just started on 6 months of chemo using Temador for 5 days then the rest of the month off. She is 68 years old, and she had her first "benchmark" MRI on Valentine's Day. There was already evidence of "something" back. We didn't tink it would come back this soon. The Drs are flexing their medical muscles and have differing options on treatment at this stage. My husband is also an only child, and we are expecting our first child in 7 weeks. His mum and I have become pretty close since we moved here 4.5 years ago. She has never asked how long she has, but the other day she was told she will see her granddaughter being born, but no mention was made of her first birthday. I guess that gives us an idea. She didn't ask (I think it is easier for her not to) and I didn't think it was my place to ask the dr either. Paula R, I am thinking of you, and admire you for being so strong. I too, am interested in what the end will bring. She is a very "elegant lady", she never shows any fear around us but we know it is there.

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Marmiedee

Hi, my husband is also 58 and was diagnosed a month ago with grade iv GBM. Before his diagnosis I had never heard of this form of brain cancer. I am of course devastated as everywhere we go the outlook is bleak. He had brain surgery three weeks ago at Loma Linda Hospital in California. He came through the surgery great and in fact came home from the hospital two days later. He will begin Proton Radiation therapy and chemo in one week. RIght now he is feeling pretty good outside of headaches and has even returned to work. Looking at him it is hard to believe he is even sick. We went to the City of Hope in L.A. and they agreed with the current treatment protocol. But they did tell us that less than 2% of patients live more than two years after diagnosis. This scares me out of my mind. I try not to focus on that and hope for a miracle for all of us. It helps to come here and share with people who are going through the same thing. Patty

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Janms

Paula, I'm responding to you because you mentioned that you are an only child. I'm an only child also, and my mom was diagnosed with GBMIV on February 8th 2005, and had surgery on Feb 11, they claim thay got 99% of the tumor, the only thing left is supposely the microscopic pices that are floating around. As this time the Glaidel wafers where inserted into the tumor site. She is doing great and has returned to work and driving short distances. Currently work is her best therapy. The only affects she is having is some short term memory loss and writing numbers but that is getting better, with practice. I live 1.5 hours from her and want to spend all my time with her but know she needs to live her life as normal as possible. I lost my dad to lung cancer 2 years ago. We start Chemo and TomoTherapy in a week. We are going to fight this with everything we have, we have small family and they will help out as much as possible.

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Janms

Paula, I'm responding to you because you mentioned that you are an only child. I'm an only child also, and my mom was diagnosed with GBMIV on February 8th 2005, and had surgery on Feb 11, they claim thay got 99% of the tumor, the only thing left is supposely the microscopic pices that are floating around. As this time the Glaidel wafers where inserted into the tumor site. She is doing great and has returned to work and driving short distances. Currently work is her best therapy. The only affects she is having is some short term memory loss and writing numbers but that is getting better, with practice. I live 1.5 hours from her and want to spend all my time with her but know she needs to live her life as normal as possible. I lost my dad to lung cancer 2 years ago. We start Chemo and TomoTherapy in a week. We are going to fight this with everything we have, we have small family and they will help out as much as possible.

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