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stage 4 glioblastoma multiforme

mrs B
Posts: 1
Joined: Apr 2011

My mother in law was recently diagnosed with a brain tumor. in November of 2010 she had a stroke and was paralyzed on her right side...she went thru therapy and was doing better until the last month we took her back to the doctor because we felt there was something else wrong and they diagnosed the brain tumor. After waiting for a week we found out it was a glioblastoma muiltiforme stage 4 . They have given her 4 to 6 months to live. We are doing 6 weeks of radiation and chemo in hopes that it will shrink it and give her more time. the reason i am posting is because i have read about all these people who have had this but all of them had it removed. my mother in laws is in the theriac region and is inoperable. I was wondering if anyone has had any experience with this disease. i am with her everyday and would love some insight on things to expect and or tips on how to make this process easier for me my family and her. thank you

Beckymarie
Posts: 358
Joined: Aug 2009

Very sorry to hear about your mother in law. My husband was diagnosed in March 2009 with a glioblastoma. He did the 6 weeks of radiation and Temador, then transition over to Avastin. In late April of 2010 his MRI showed advancement of the tumor. At that time we took him home and hospice came in. His was also inoperable. He was given a year or less but did make it 15 months. I wish I could say they were good months but he was very week, eventually lost all use of his right side, speech. It is a difficult diagnosis. Howver, I have seen postings here of people who have survived several years with this tumor. I wish I could give you some positive feedback, but unfortunately for us we did not get a positive outcome. If you have any specific questions, i would be happy to answer them.

htmama
Posts: 6
Joined: Apr 2011

Hello

I was wondering more about your personal experience. I am not sure how to email you directly.

My dad was diagnosed in Dec. of 2009, inoperable and thus far has completed the 6 weeks about a year ago, now does is monthly Temador. I just wanted to know a little bit more.

Thanks

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

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

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Please don't listen to the doctors when they give you time limits on how long someone will live. Time limits are based on statistics and I personally hate statistics. Doctors aren't God and can't tell you how long you have to live. I don't have a glio but I have outlived every prediction and statistic that the doctors have thrown at me.

I would suggest seeking a 2nd or 3rd opinion if you haven't already done so; with a doctor in another part of your state if possible. The reason? Doctors tend to get in a rut and some only have limited knowledge base of what type of treatment is available. If the doctors run out of ideas and options, what are you left with?

If you have an opportunity, try to find the book "America's Top Doctors" published in 2010. The names are recommended by doctors all over the country who they feel excel at what they do. It is a comprehensive guide to the best doctors in every area of the country and they are categorized by area and expertise. That is how we found a specialist in our area that we didn't even know existed but which was desperately needed.

You and your family are in my prayers.

God's Blessings,
Teresa

mgreggsmith
Posts: 22
Joined: Mar 2011

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

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

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

mgreggsmith
Posts: 22
Joined: Mar 2011

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

libers5
Posts: 1
Joined: Apr 2011

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

stonybrook66
Posts: 8
Joined: Apr 2011

sounds like a similar cancer story as my Dad is currently going through, his is inoperable as well. We just finished his 6 weeks of treatments. Have to wait 2 weeks for the swelling from radiation to go down, and they will do more scans to see if chemo and radiation had any effect on his tumor. We have been fortunate so far, no pain, no headaches, no paralysis. His negative side effects have been blood clots, gaining weight, becoming diabetic, hand tremors. Will keep you posted, and the best of luck. Will keep you all in my prayers.

dasspears
Posts: 233
Joined: Feb 2009

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.

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