Anyone Out There? Anything New And Hopeful About Glioblastoma Multiforme?

My dad was diagnosed with Glioblastoma Multiforme in Sept of this year. He has undergone surgery, chemo, radiation. We have gone to Memorial Sloan Kettering (NY)Cancer Clinic for a second opinion. He is a father of one (me), husband, and grandfather of two boys. He was a Guidance Counselor for 28 years in a High School- but now unable to work due the illness. He is only 58! He suffers from aphasia as a result of tumor invasion- but otherwise- besides the speech he is doing fine...We are NOT looking for a clinic trial- we are looking for something- or SOMEONE that might be able to come up with some new ideas for helping my dad. The prognosis is very poor...we are searching for answers. MY FAMILY AND I ARE LOOKING FOR SUPPORT GROUPS- INFORMATION AND OTHER PEOPLE THAT MIGHT BE ABLE TO HELP. ANY AND ALL INFO WOULD BE GREAT. Please feel free to contact me via this message board.
Thank you and God Bless!

How is your dad doing now?????? My husband was dx in April at age 58 with a large glio inoperable.
There was a bleed 3 days after the biopsy and he lost all mobility on his left side. He is gradually gaining all the mobility back except the ability to walk. He is working with PY using a leg brace and walker.
He has major personality changes going from listening to gospel music and crying to loud anger out bursts. He has lost short term memory at times and other times he is sharp as a tack. He is hard to live with because he has a hard time with his body temperature, (always cold) and urinary problems (has to go all the time and urgently). He wears depends. He is just frustrated because he has to have everyone wait on him and my kids tend to ignore him due to his anger outbursts. They are teenager 16 and 18 into their own world. I can relate to ignoring my husband. There are times I just want to hold and comfort him and we cry, but then it just suddenly goes to another facet of anger.
They say he has 12 - 15 months and will just get more tired and eventually drift to a coma. He has no pain--maybe a bit of pressure. They are trying to decrease the decadron because of the high sugars (no on insulin) and muscle wasting.
Prayers and prayers---God take the tumor away and bring my former husband back.

My husband was diagnesed with Gbm stage4 two weeks ago. He underwent an emergency craniotomy the tumor went from no-existent to several masses in the right paratelial lobe in 8 days. He has bumped his head and required staples, they gave him a CT scan just to play it safe and found nothing. A week later he had unbearable pain. We went back to the hospital where they did another CT and found the two masses.
After the surgery it is amazing but aside from some weekness at times and pressure in his head. he seems fine. I can't understand how a man who looks this healthy only has 6 months to a year to live? He was undergoing intra corradid arterial chemo. They only do this treatment in one place (Stony Brook University Medical Center, LI NY) But we had a second opinion over at Sloan Kettering and they believe he would benefit more from. Radiation treatment first with temidore. As it is less invasive not as risky. Has anyone else gone through this intra coradid therapy? and how was your response. Ant info would be greatly appreciated.

Hi,

My father was also diagnosed in September. He is 76 years old. I am also an only child. I have a 6 month old and I am 4 months pregnant. If you would like to chat with someone who is going through this too -please respond and I will forward you my email.

My prayers are with you


Paula from PA

How is your dad doing? I am sorry to tell you that my mother, who was diagnosed with this horrible disease in late Dec 04, passed away on Jan 15th 2005 -- a mere three weeks after diagnosis. However, she refused treatment. My heart goes out to anyone who is dealing with this disease -- it is devastating. My mother was 78, in great health, very active and then suddenly she was gone. It is very scary -sorry I don't have better news to report. I am not trying to make you feel worse, but this disease has no cure. You have to make the most of the time that you have and the best you can do is try to make your dad as comfortable as possible -- sometimes I wish that my mother had tried the treatment, but her tumor was inoperable and she was very impaired right away. She maintained all of her cognitive functions, but lost her spatial awareness. This means she had no sense of where she was and was unable to find her way around. She could not walk from her hospital bed to the bathroom 2 ft. away without getting lost. As the disease progressed, she didn't even know which end of the bed her head went at -- it was so sad - and even with treatment, they told her should would probably not recover what she had lost. You need to consider quality of life...but I am encouraged to see that some people dealing with this disease have had much better luck with that than my poor mother. Good luck....you will not have an easy road ahead...but try to be strong -- your dad needs you...

Hi,
My heart goes out to you and the loss of your mom. It had to have been terrible.
However, those of us who are living with loved ones trying to save and extend their lives with treatment can't and don't want to hear the devastating effects of someone who refused treatment. I don't want to sound uncaring, but your mom chose to die and mine chose to live as long possible with treatment. I wonder why when I see your postings on this board they are all about untimely death.
Sorry.

I have been diagnosed recently, 56 yo finishing with chemo and radiation, I feel ok but the biggest problem is left sided weakness, being a burden and a lot of dependence-one day at a time - other experiences?

jim

Maybe it is helpful to some people to hear about all options, including refusal of treatment. That was hard for me to think about when a close friend was diagnosed a week and a half ago, but when I found out the losses treatment would likely cause him and the short extension of life it might offer, I understood his decision better. His quality of life remains fairly good, with friends and relatives constantly with him. He's glad for whatever time he has now to reflect and to make peace in areas he may feel the need.

Genuine prayers for comfort for all who are here.

My Dad, who is 62, was diagnosed with Renal Cell Carcinoma in September, 2005. His presenting symptoms of left-sided weakness and reduction in spatial awareness led to a CT of the lower back due to a history of lumbar nerve impingement. The CT showed some abnormality in the kidneys, and a sonogram followed, as well as an MRI, both of which showed massess in both kidneys, left being larger. A left nephrectomy followed. Post-op, his left-sided weakness increased, instead of improving, leading to a neurology consult. MRI of the head and neck followed, with the Diagnosis of GBM, with two tumors to the right parietal lobe of the brain. This diagnosis did not take place until the last week of November. His symptoms first presented in July. So, for 5 months, the tumors were growing in his brain, undiagnosed. A craniotomy followed, where the surgeon found the necrosis and hypervascularity common to GBM, and essentially took biopsies and closed him up. Resection was not possible.

Following the removal of stitches in his scalp, he was scheduled to undergo radiation (IMRT) therapy and chemo using Temodar. If he chose not to treat, 3 months was the optimistic prognosis. If he chose to treat, he might gain a year. That's a pretty big MIGHT, and at considerable cost. He was unable to tolerate even the simulation of the radiation therapy, due to severe PTSD acquired by serving 3 tours in Viet Nam, courtesy of the USMC, and Uncle Sam. A proud veteran, my father never showed these symptoms of fear, paranoia, and extreme claustrophobia until now, and just lying on the radiation table made him sweat with a fear so acute, he would burst into tears...

He decided not to treat. We are living one day at a time. We are looking at about 6 weeks.

I am sure we are not the only family with circumstances leading to a "no treatment" decision. God bless all of you who are living with this terrible diagnosis.

I saw your message about your husband on the website Cancer Compass. I know that the posting is from 2004, but I was wondering if you would tell me how your husband is doing. My husband also has GBM & I am looking for support from someone who is going thru or has gone thru the same thing.

Any information or a reply back would be appreciated.

Thank you,

Loriann