longest living glioblastoma-multiforme survivor - Jerry

In May 1999 my husband, Jerry, age 43, was operated on for the first time for Glioblastoma Brain Cancer (confirmed through biopsy), Stage 4, frontal lobe, the extracted tumor was 2 inches x 4 inches by 6 inches and yes, these are inches.

Dr. Raymond Poelstra placed six glidal wafers in the bed of the extracted tumor - it is my understanding that these wafers contained both radiation and chemo elements.   Jerry's prognosis was 3 to 6 months tops, no ifs, ands or buts.  

A month later Jerry had his second crany operation - this time to remove tumor debree which formed in a ball the size of a small grapefruit.  A very short time later he began radiation treatments - twice a day - for the full 40 "zaps" allowable.   Four months after Jerry's first operation he begain chemotherapy, treating with Dr. Gary Nicholson - once every 6 weeks for almost two years.  He treats with Dr. Robert Simkins for seizer control.

Over the last 9 years Jerry has had many many complications from the cancer, radiation and chemotherapy.   He has appraxia that effects his verbal communication, others cannot understand him, but his loved ones sure can!....and three years after the first operation he lost his ability to walk, then he lost his swallowing ability so he now has a feeding tube (g-tube) in his belly, he has had many bouts and hospitalizations with phenomia, etc...   Jerry has had a very rough time of it.

Jerry is of sound mind and understands all that goes on and even can join in a game of texas holdem, sometimes winning!,  every now and then.  He also enjoys fishing every now and then with our son.  As of this date, May 21, 2008 Jerry is still with us.

I know that Jerry is listed in the medical books for studies on treatments for glioblastoma-multiforme and I do hope that through him, others may have a better life.  

On 5/21/2008 roxanne2 wrote:

In May 1999 my husband, Jerry, age 43, was operated on for the first time for Glioblastoma Brain Cancer (confirmed through biopsy), Stage 4, frontal lobe, the extracted tumor was 2 inches x 4 inches by 6 inches and yes, these are inches.

Dr. Raymond Poelstra placed six glidal wafers in the bed of the extracted tumor - it is my understanding that these wafers contained both radiation and chemo elements.   Jerry's prognosis was 3 to 6 months tops, no ifs, ands or buts.  

A month later Jerry had his second crany operation - this time to remove tumor debree which formed in a ball the size of a small grapefruit.  A very short time later he began radiation treatments - twice a day - for the full 40 "zaps" allowable.   Four months after Jerry's first operation he begain chemotherapy, treating with Dr. Gary Nicholson - once every 6 weeks for almost two years.  He treats with Dr. Robert Simkins for seizer control.

Over the last 9 years Jerry has had many many complications from the cancer, radiation and chemotherapy.   He has appraxia that effects his verbal communication, others cannot understand him, but his loved ones sure can!....and three years after the first operation he lost his ability to walk, then he lost his swallowing ability so he now has a feeding tube (g-tube) in his belly, he has had many bouts and hospitalizations with phenomia, etc...   Jerry has had a very rough time of it.

Jerry is of sound mind and understands all that goes on and even can join in a game of texas holdem, sometimes winning!,  every now and then.  He also enjoys fishing every now and then with our son.  As of this date, May 21, 2008 Jerry is still with us.

I know that Jerry is listed in the medical books for studies on treatments for glioblastoma-multiforme and I do hope that through him, others may have a better life.  

  

Roxanne, That is wonderful!!  I'm sorry your husband has had such a tough battle.Sounds like he has paved the way for others too.

I guess this is where I get confused. What are we comparing to?

If , as Lorre G states in a post about long term survivers..." I host a long term survivor party every year for patients with high grade tumors who are three or more years from diagnosis.  In 2007 I invited 45 patinets along with their familes to this event.  Not everyone dies from this diagnosis.  True the stats are not great, but people do survive.  I have 1 patient 17 years out another 16 years and another at 11 years.  The numbers get better every year.  Some of this is because of the advancement of diagnostoic equipment, some because of the  advancement of equipment used by the neurosurgeons and some because of the chemo options available.  There is hope. "

What about the  17, 16 and 11yr survivor and what was the grade of the tumor/cancer? I hope you don't think I'm being disrespectful. I'm just trying to put the puzzle of information together.

When listening to the radio and hearing about Kennedy again this morning my hs and I where talking about this. Is'nt there an organization that ALL hospitals and Neuro- oncologist are reporting data to?

As we were told by our neuro - oncologist on Monday everyone is different and no one really knows how long each person has. So many variables.

Six months from dx and we're thankful for stable.Celebrating his 57th B-day on Friday : )

Laura

Hi Laura,

Thank you for your kind thoughts re my hubby....

I'm a bit confused myself as to your question....  If you are asking why I wrote that Jerry was the longest living glioblastoma-multiforme survivor... the answer is that that is what I am told by his doctors!   Both are top physicians in their field....   I was also advised that they have heard of other long term survivors, but they believe that these were misdiagnosis and not glioblastoma-multiforme.  

Hi Roxanne,

No, not at all was I questioning your information : ) I admire you and your husband for having such a fighting spirit. It's so encouraging to hear stories like yours.

As you know this disease comes with so many ups and downs. I read such encouraging stories that are posted here that have helped us remain positive. However I don't understand how the information is compiled.

From time to time my husband will have someone tell him they are a 15 yr survivor of a brain tumor/cancer or other long term survivors have shared their stories with us. We don't ask questions regarding the type,but it's just so different from what the stats and the Dr's tell us. I do understand that some brain cancers are diagnosed as something else in the beginning of diagnosis,but later develope to GBM. maybe thats where the info gets to be in the grey area???....If your diagnosed from the beginning with GBM the outcome in most cases is different and unfortunatly I have read too many of the short term stories too.

As I said in the earlier post, I believe everyone is different in their stuggle to fight all types of cancer. It would be interesting to hear from others about where the information comes from.

My best to you and your husband and continue the good fight.

I would also question those numbers-15 years , 17 years with GBM? I don't know about that, but if it's true, then I wish them many more years.

Joe

Hi Joe -- those numbers do sound too good to be true, but if you look at the survivors stories on virtualtrials.org, they list 24 GBM survivors -- 14 of them are from 2-9 years out and the remaining 10 go from 10 years to 21 years!  I'm not sure how up-to-date all of them are though, some haven't been updated in a few years and I don't know what that might mean.

In any case, there are not nearly enough stories posted, I'd like to see hundreds of names on that list.  We're 9 months out with my husband and all is well right now -- it's my wish that I post his survival story on that list on his two-year anniversary.

Greetings Nancya,

Huggggggggs to you and your hubby...   I wish you comfort, peace and ease in your weary minds. 

It helped me to find my "peace" about four months into this part of life with Jerry, many years ago, after I finially accepted that it was out of my hands...

    that we would pray with all our might...that we would do all that we could do....that we would make the best decisions we could....and then we would have to just "go with the flow"... 

P.S....  sure does help to read a good joke book out loud to each other, to watch a good comedian or a funny sitcom on tv, or to just plain act silly and goofy every now and then! 

Hello everyone. I just joined this site as I am researching and trying to find ways to communicate with other GBM survivors and caregivers.

My mother was diagnosed with GBM of the right temporal lobe on May 10, 1991 at the age of 35 - she's made it to 17 years! We just had a visit to her neurosurgeon, following an MRI, and she is still his longest living patient.

We've certainly faced challenges, as all of you have. I was 12 years old when they wheeled my mother off to surgery and told that her life expectancy was no more than 2 years; I am now going on 30 and her primary Caregiver.

She went through radiation and chemotherapy following her surgery. She responded well; I don't remember her being sick. All was going well until a tumor was found in her colon. She had surgery on September 16, 1994 - it was cancer. She went through another stretch of chemotherapy.

Her spirits have always remained high; she never felt sorry for herself. She was still the life of the party and went on to keep her daily routine.

It wasn't until around 2002 that things started to change. Her judgement was off, her short-term memory was getting a bit worse and we began to worry. At this point, I took over everything for her. After one too many car accidents, I took her car away so she was no longer driving by 2003. It had been a slow, but steady progression of her limitations. 'Health' wise, she's been fine. 

The last year or two have been a bit more rapid. She's less steady on her feet, has lost hearing in her right ear, is more forgetful, tends to isolate herself and is depressed. She still has a sense of humor, but has become very child-like.

My mom will celebrate her 53rd birthday next month and she still has a fighter in her. She hasn't let brain cancer, colon cancer, diabetes, dementia, loss of hearing or anything get in her way of LIVING. She's certainly not the person she was 20 years ago...but who is?!

My hat's off to all GBM survivors out there! Keep pushing on!