has anyone heard of someone surviving glioblastoma?

23 Posts | Page(s): 1 2 3  Next 

has anyone heard of someone surviving glioblastoma?

by Sweetsteffers04 on Wed Feb 28, 2007 12:00 AM

Quote | Reply

My boyfriend has had glioblastoma grade 4 for about 2 1/2 years now.  He is only 21 years old and was diagnosed when he was 18.  We tried so many different treatments, but the 4th time it came back he could no longer fight it and it has now spread all over his brain.  He is very sick and weak right now and may only have a few more days to live. 

I was just wondering if there is anyone that has actually survived it?  Has anyone heard of anyone getting pass this type of brain cancer to live a normal life.  I heard a story of a man who lived 5 years after being diagnosed and i just wondered if this is always a terminal cancer?

 

 

RE: has anyone heard of someone surviving glioblastoma?

by Kewlsense on Wed Feb 28, 2007 12:00 AM

Quote | Reply
I'm sorry about your bf. Never give up. Google "dr. ben Williams" He has survived gmb iv for 10 years now.  

RE: has anyone heard of someone surviving glioblastoma?

by Revibug on Thu Mar 01, 2007 12:00 AM

Quote | Reply

Ugh, I am SO sorry that you're dealing with this...

I'm around your age- 25 next week- so I feel your pain. This disease is horrific, but in younger patients I guess it hurts more, if you know what I mean.

You said you've done everything? Where is he being treated??

I don't wanna be the bubble-burster/mean one/depressing one, but yes- generally this is a terminal illness.  There ARE people who survive, but not if the tumor has spread so aggressively.  I know this because my mom was doing well for a while- about a year- but just a few weeks ago the tumor spread, crossed the midline, and is everywhere. Believe me, we did everything too! Best doctors, best hospital, best care, etc. 

This sucks bigtime.

See if you get a response from Linda(Madeline Ruth), Jennifer, Amnia, Bob, or any other "regular" who has dealt with this for a while. They, like us, have been fighting long and hard. Jennifer and Madeline just lost their beloved mother, and Bob's wife is fighting like a true champ! My mom, too, is hanging in there- but you know, it doesn't look good.

I hope you don't think I'm mean or whatever, but I know that when MY mom was declining, I wanted to know EVERYTHING! Bad, good, sad, happy- I wanted to know it all.

Write back and update us. We, through our tears and struggles, always write back and keep each other posted on a daily basis.

We're all praying.

Love, Revi (NJ) 

RE: has anyone heard of someone surviving glioblastoma?

by Revibug on Thu Mar 01, 2007 12:00 AM

Quote | Reply

...oh yeah, one more thing- 

Just to clarify- I'm not saying this is the end; I'm not saying give up; I'm not saying radiation, chemo, alternative treatments, holistic, and other approaches don't prolong survival. I'm not saying there are no miracles. 

I'm just saying that it's not a good situation, and I think any of my friends here on this board would agree.

My mom is 49, which is considered young, so I also belong to Young Adults Surviving Glioblastoma.  Check the forum out at www.yasg.com

You have to go under 'guest book' where it says FORUM and click and you'll see the thread.

<3 

RE: has anyone heard of someone surviving glioblastoma?

by Willing on Thu Mar 01, 2007 12:00 AM

Quote | Reply
Go to the "Burzynski Patient Group" website and click on the names in the "Our Stories" section next to  the Glioblastoma headings.There are some shocking profiles there.

RE: has anyone heard of someone surviving glioblastoma?

by Our3sons on Thu Mar 01, 2007 12:00 AM

Quote | Reply
Here are some posts that I have come across within the past few months on this message board as well as others.
1)  I was talking to my lawyer the other day and he mentioned his father. He had a GBM and lived for 19 years!!!!!
2)  Husband diagnosed and surgery for GBM March 2003. On Temodar till last July. Stable MRI the entire time.
3)  I have a 17 year GBM survivor in my support group with no reoccurrence, her mri's are now every 18 months, she did no extras. Her story is AMAZING!!!!!!
4)  My husband is a 5 year gbm survivor. He was diagnosed in Nov 2001, underwent surgery, radiation and 6 rounds of pvc chemo. He's had no recurrence, and has not required further treatment.
5)  I was diagnosed with a GBM Grade IV tumor two years ago and have been receiving treatment since 2005. My most recent MRI was yesterday and I will know the results on Friday. Previous scans have been stable. Feeling good two years later.
6)  Another stable MRI for Lou - over 3 years out! While I was at work today, he made a big pot of split pea soup, and manhandled the freezer in the garage to make way for a new one. He is an amazing man, and is one of the many who were originally told "3-6 months to live" (before we got 2nd, 3rd, and 4th opinions!) The fight goes on - but he is a living testament to a positive attitude and best current medical practices (along with a bit of luck, I guess)
These two posts are from the same lady:
7a)  My husband Russ is still doing well.  We are at the two year mark and he still has no regrowth of tumor.  He is retired now which is nice and feels pretty good most of the time.  He discontinued Temodar in July and now he gets an MRI every two months to check for regrowth.
7b)  When my husband was diagnosed 2 years ago we were pretty much told to go home and get important matters in order because he would not be around in six months.  We were of course in shock and devastated.  Everywhere we turned, every doctor we consulted, told us that he probably had six months to live.  They all said that GBM was a death sentence.  Well......damn the statistics!  Here we are two years later, thank God, and he has had no regrowth of tumor and looking at him, you would never even know that he is sick. And no, he is not on any special supplements, eats whatever the hell he wants, much to my chagrin sometimes!!  But I feel that if a doughnut now and then makes him happy, what the heck.  Today he is in the spare room up on a ladder putting up crown molding!   But of course we remain cautious, and every MRI is horribly stressful, but we just keep the faith.  We know how lucky we truly are.  So my advise is to just stay focused on treatment, keep a positive attitude, and always, always keep that faith and hope alive. 
8)  I know a 54 year old woman who has been on Temodar for over 3 years. She has had GBM for 10 years (2 surgeries). Her Temodar schedule is now every other month. Her neuro-onc said she could go off of chemo, but she's not comfortable stopping it at this point in her life. It's a hard decision--every BT case is different. There's no way to know for sure if the chemo is keeping her scans clear or if they would look the same without the chemo.
9)  You will find there are several of us long term survivors of GBMIV out here. I am now 14 years since diagnosis of gbmiv in right temporal lobe. I had gamma knife in '93. I did not do any chemo but had surgery for recurrence in '95. I was totally blind after my surgery but my vision came back except for some left side peripheral vision. There are not many good weapons in our bag to fight this thing with and they all come with drawbacks. I chose surgery and radiation. It seems to have worked for me. The side effects of the radiation have lessened over the years and even with the deficits I am here laughing, loving and living. Try to remain positive. I know it is hard when the Dr.s don't give much to be positive about. I too was give 6-9 months in the beginning. in '95 a time came when my family was told I probably wouldn't live through the weekend. Only God knows what is next. All we can do is make the most of this moment. I wish you and your husband the best and pray you will have the strength you are going to need for this journey.
Here are some long-term survivors that have their testimonies posted on-line. As far I know, they are all doing well. Their stories can be read at ww.virtualtrials.com.
Matthew Fullerton is almost a 19-year survivor.

Tim H. is a 17-year survivor.

Linda K. is a 15-year suvivor.

Peter D. and Kevin K. are 13-year survivors.

Ben W. is a 12-year survivor.

David B. and Leslie B. are 10-year survivors.

Lisa B. is a 7-year survivor.

Donna F., Betsy S. and Cheryl B. are 6-year survivors.

Dottie B. and Chris E. are 4-year survivors.

Doug C. is a 3-year survivor.

Jerry K. is a 3-year survivor without a recurrence

These just scratch the surface of survivors that we've come across, and we've been in contact with almost all of them as well. I think there are many, many more . . . but we just don't know about them. Our challenge is to not put all our eggs in one basket and look to these cases as our source of hope. While these cases certainly provide a tremendous amount of encouragement, our hope is in spending eternity in Heaven with our Lord and Saviour . . . because, afterall, GBM IV is what it is . . . a life-threatening and, most times, deadly disease.

Blessings,
Bridgett

RE: has anyone heard of someone surviving glioblastoma?

by Tooyoung22 on Thu Mar 01, 2007 12:00 AM

Quote | Reply

Bridgett

Just wanted to say wow and thanks I think we all need that reminder to remain strong and positive through out this battle and that it is possible to win.

It really hits home today for me as my 22 year old boyfriend, 7 month fighter, goes in for another MRI to check on the effect of the radiation/chemo tomorrow. Im Keepinh my fingers cross. He is doing great with all the treatment so we are hoping that means he is beating this thing.

Never give up hope!

RE: has anyone heard of someone surviving glioblastoma?

by Madeline_Ruth on Thu Mar 01, 2007 12:00 AM

Quote | Reply

On 2/28/2007 Sweetsteffers04 wrote:

My boyfriend has had glioblastoma grade 4 for about 2 1/2 years now.  He is only 21 years old and was diagnosed when he was 18.  We tried so many different treatments, but the 4th time it came back he could no longer fight it and it has now spread all over his brain.  He is very sick and weak right now and may only have a few more days to live. 

I was just wondering if there is anyone that has actually survived it?  Has anyone heard of anyone getting pass this type of brain cancer to live a normal life.  I heard a story of a man who lived 5 years after being diagnosed and i just wondered if this is always a terminal cancer?

 

 


Dear Sweet, I don't think we can say that GBM is always terminal. As Bridgett noted, there really ARE long-term survivors. But, GBM is always malignant. Terminal and malignant are not the same thing. The location of these tumors is significant in respect to the ability to remove most or all of the tumor. The earlier it is caught, the greater those chances will be. Plus, younger patients, have greater chances of being long-term survivors, and they typically do not have other disease states that prevent them from healing and recovering properly. Every patient is different. In your boyfriend's case, it sounds as if, unfortunately, this tumor's growth has gotten out of hand and cannot be stopped at this point. Once the programmed cell death gets to this point, hope has to change from long-term survival to quality of life. If he only has a few more days before this takes his life, then the tumor must have been very aggressive and in a location that affected his ability to live. I'm so sorry for you and for him. I'm glad that you have had him in your life because he sounds very special, and I'm sure he feels the same about you. This is such a blessing in life to love someone so much. Please keep us posted.

RE: has anyone heard of someone surviving glioblastoma?

by Sweetsteffers04 on Fri Mar 02, 2007 12:00 AM

Quote | Reply

Thanks everyone for all the information.   I just felt that everytime I googled glioblastoma it was made out to be a terminal disease. 

My boyfriend's tumor was located in the middle of his brain and could not be operated on so we mostly did Chemo and Radation.  For a while it seemed like he was going to beat this, yet it kept comming back, and the last time he just had a stroke and had to get off of his Chemo for a while, this caused the tumor to spread all over his brain and get pretty sick.  He got on Chemo again, but this time it didn't work.

Thanks again everyone!

stef

RE: has anyone heard of someone surviving glioblastoma?

by Sleepingonthejob on Sat Mar 03, 2007 12:00 AM

Quote | Reply

I know Peter D. that Bridgett mentioned in her reply. He used to volunteer with my father at the Hospital of St. Raphael. He was also a member of the support group Eric and I used to visit. He is an amazing person. He moved to Arizona a couple of years ago, but heard about and sent a very warm card when my father passed away from lung cancer on December 11, 2006. He loves to share his story and encourage others to never give up. 13 years and counting......

Candy

23 Posts | Page(s): 1 2 3  Next 
Subscribe to this message board discussion

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.