stage 4 glioblastoma multiforme

Hey, don't believe that 4-6
Hey, don't believe that 4-6 months that the doctors gave your mother-in-law. They're no gods who could tell when someone's time will be over. Just keep your faith miracles can happen.

You can try reading survivor stories of brain cancer from this site. There are a lot of BT survivors here:

http://virtualtrials.com/survive.cfm

THe first story in that site came from a GBM survivor since 1987. He is still alive until now.

stay strong and God bless

keep looking for surgeon
my brother-in-law was told his tumor was inoperable by every surgeon on the east coast (including Duke University) but Dr. Berger at UCSF did the surgery - very successfully: http://neurosurgery.ucsf.edu/index.php/about_us_faculty_berger.html

mgreggsmith said:

Speculations about longevity
I heartily agree with the comments above. I was diagnosed with a malignant grade IV glioblastoma multiforme brain tumor in October 2006. At the time the doctors told me, based on statistics, that I had 3 to 18 months to live, with 12 months being their best guess. They told me to get my life in order. So I did. But then I didn't die "on schedule" and I'm still doing fine over four years.

I had brain surgery, radiation and take a monthly 5-day course of Temodar. I've had MRIs every four months and all have been clear. So it is important to have good medical care and take care of yourself (rest, nutrition, exercise, etc.). But do not get stressed about a 'dead line.' Everyone is different.

I also agree that it is critical to get the best doctors (even if they also speculate based on statistical models). When a CAT scan first identified my brain tumor my internist in a mid-size town in Oregon planned to refer me to a local neurosurgeon who does occasional brain surgeries. That man is probably fine. But what I wanted was a 'star' who had vast experience with my particular problem. If someone was going to cut on my brain I wanted the best. I talked with a local doctor I know socially and said my condition was serious and I would fly anywhere in the U.S. to get the best care. He told me that one of the best neurosurgeons in the U.S. was nearby at Oregon Health and Science University (OHSU) in Portland. I got an appointment with him and he did brilliant surgery on my tumor. He thought he got it all and said he had "clean margins." Then he referred me to the top neuro-oncologist at OHSU who handles my meds. I think those two men had kept me alive with their superior medical expertise. Remember: medicine is a "practice." You want someone who has had lots of practice before he or she works on your brain.

You have to be your own advocate and demand the best care available. Don't settle for someone who is not superior. It is your life, not the doctor's.

Gregg Smith

Thank you
Wow, Gregg! Thank you for your post. I LOVE posts like yours. I read them over and over...I practically memorize them because they help me so much when the fear starts to get ahold of me. David does not have GBM4--he has anaplastic oligodendroglioma. Different cancers but same statistic-driven life span predictions. So hard to not be scared when they say some of those things.

I was especially encouraged by reading that you could have flown anywhere in the USA for treatments and you picked OHSU. We also are at OHSU. My son's neurologist in Eugene also referred us to an awesome surgeon at OHSU. He told us that people fly in from all over the USA so this particular surgeon can do their brain surgeries. His name is Dr. Johnny Delashaw and I'm betting that's the surgeon you had too. He is incredible. When David was facing brain surgery, I was afraid that it would leave David with "issues." I asked Dr. Delashaw what David would be like after the surgery and he said that David would be exactly like he was before the surgery. I was amazed that he was so positive and so sure that David would be okay. I was desperate for some good news from someone. And I trusted Dr. Delashaw. And David was 100% the same...except he was minus 100% of the visible tumor. We love Dr. Delashaw and are very, very grateful to him for doing David's surgery.

We found out that David had a tumor on a Wednesday, we saw a neurologist in Eugene on Thursday and the Eugene neurologist referred us to Dr. Delashaw and OHSU that same day, and David had the surgery the next day, on Friday. Even with Dr. Delashaw's busy schedule, he managed to fit David into his operating room. We are so grateful that they removed the tumor so quickly. Waiting days or weeks would have been excruciating. It was bad enough just waiting overnight.

Our neurologist/oncologist is Dr. Edward Neuwelt. He scared us pretty badly (major understatement)in the beginning with his life expectancy predictions but through the course of these last two years, we've come to understand him a little better and to appreciate his knowledge and expertise. I know that he cares deeply for all of his patients and he has an impossibly hard job. I wonder if you are seeing him too? Just curious...no need to answer if I'm being too nosy.

Thank you again for your words of encouragement and your great advice.
Love and blessings,
Cindy in Salem, OR

cindysuetoyou said:

Thank you
Wow, Gregg! Thank you for your post. I LOVE posts like yours. I read them over and over...I practically memorize them because they help me so much when the fear starts to get ahold of me. David does not have GBM4--he has anaplastic oligodendroglioma. Different cancers but same statistic-driven life span predictions. So hard to not be scared when they say some of those things.

I was especially encouraged by reading that you could have flown anywhere in the USA for treatments and you picked OHSU. We also are at OHSU. My son's neurologist in Eugene also referred us to an awesome surgeon at OHSU. He told us that people fly in from all over the USA so this particular surgeon can do their brain surgeries. His name is Dr. Johnny Delashaw and I'm betting that's the surgeon you had too. He is incredible. When David was facing brain surgery, I was afraid that it would leave David with "issues." I asked Dr. Delashaw what David would be like after the surgery and he said that David would be exactly like he was before the surgery. I was amazed that he was so positive and so sure that David would be okay. I was desperate for some good news from someone. And I trusted Dr. Delashaw. And David was 100% the same...except he was minus 100% of the visible tumor. We love Dr. Delashaw and are very, very grateful to him for doing David's surgery.

We found out that David had a tumor on a Wednesday, we saw a neurologist in Eugene on Thursday and the Eugene neurologist referred us to Dr. Delashaw and OHSU that same day, and David had the surgery the next day, on Friday. Even with Dr. Delashaw's busy schedule, he managed to fit David into his operating room. We are so grateful that they removed the tumor so quickly. Waiting days or weeks would have been excruciating. It was bad enough just waiting overnight.

Our neurologist/oncologist is Dr. Edward Neuwelt. He scared us pretty badly (major understatement)in the beginning with his life expectancy predictions but through the course of these last two years, we've come to understand him a little better and to appreciate his knowledge and expertise. I know that he cares deeply for all of his patients and he has an impossibly hard job. I wonder if you are seeing him too? Just curious...no need to answer if I'm being too nosy.

Thank you again for your words of encouragement and your great advice.
Love and blessings,
Cindy in Salem, OR

Delashaw and Neuwelt
Cindy,

You nailed it. My neurosurgeon is Dr. Johnny Delashaw and my neuro-oncologist is Dr. Edward Neuwelt both at OHSU. They are the best.

Dr. Delashaw performs up to 4-5 brain surgeries a day. Other surgeons prepare a patient and then Dr. Delashaw comes in and does his magic. He's one of the best neurosurgeons in the country. Dr. Neuwelt has written the leading medical text on neuro-oncology. He to is one of the best in the country.

I had the same experience with Dr. Delashaw as you. My internist told me on a Thursday I had a brain tumor and he was referring me to a local surgeon. I thought he was probably just fine but I wanted someone with vast experience. In medicine experience is the key. That night I called a local physician I know in Salem and asked him who the best neurosurgeon he knew of on the West Coast. He immediately said: Dr. Johnny Delashaw. Friday morning I talked with my internist and said I wanted to be referred to Dr. Delashaw. He said I would never get in, he is too busy and too well known. I said JUST TRY!!! So mid-day I got a call from Dr. Delashaw's scheduler, Christine. She asked if would be possible for me to meet with Dr. Delashaw first thing Monday morning? I told her I would have to check my calendar and see if I could work him in. ; ) So early Monday morning I met with Dr. Delashaw and gave him my films, which I had picked up Friday afternoon. He looked at them and said I needed surgery quickly and asked when I wanted it? I said: "How about this afternoon?" He said, no, I need various blood and other tests. But how about first thing Tuesday morning? I said I thought I might be able to work that in. ; ) So I was in surgery Tuesday and was released three days later.

A week later I had a grand mal seizure and was back in the hospital for a week. I was then put on Keppra, had radiation and am on monthly five-day courses of Temodar.

I have to take Keppra to prevent a subsequent seizure. And I have to take Temodar to prevent a subsequent tumor. But aside from the meds, my life is normal.

There is no way to tell how long my luck will hold, but if you look at the statistical charts, it is pretty grim for the first year or two. But after that there is a long horizontal 'tail' where some people seem to live a normal life 'til there is a future medical issue that takes them out. It is really important to acknowledge that we are mortal. Someday, somehow, we are all going to die. The only question is when and how we exit. With luck we will live our remaining lives with grace, productivity - and love. Because in the end, that is all there is.

All the best,
Gregg in Keizer

Sister-in-law just diagnosed
Glad to find this posting. My sister-in-law has just been diagnosed with stage 4 glioblastoma multiforme. She is 56. Two tumors were found - one was near the surface of the brain and with surgery, a portion of the tumor was removed - the second tumor is mid-brain and inoperable. She is currently taking oral chemo and receiving radiation treatments. We are traveling to visit her and her husband this week so I will know more about her diagnosis and treatment then. The doctors have given her 7 to 11 months due to the level of her mid-brain tumor and how aggressively it is growing. Her husband is also a doctor but his specialty is sports medicine.
I'm interested in knowing what to expect as the illness progresses so I know how I can assist them. I am unable to find much on the internet - I guess everyone is different in terms of side effects. Any information you would like to share would be most appreciated and helpful.

I'm a member of the anal cancer group on CSN - 4 years NED.