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GBM GRADE 4!

butterfly2811
Posts: 7
Joined: Oct 2011

My mother-in-law has just been diagnosed with GBM grade 4. They say she has a butterfly glioma and that it is inoperable. They have given her 4 months to a year. She is 59 y/o.I hate timelines and we are not giving up HOPE! I would love to hear what treaments have worked for others with this diagnosis. We are also interested in hearing about any alternative therapy that has worked for others as well. I just want to know what to expect so I can be on top of everything for her. We would like to get a second opinion also. Does anyone know of great Physicians in the Chicagoland area that specialize in brain ca? Or even MD's that we could send her scans to? We are willing to travel if need be. She is a fighter and We do beleive that Miracles happen every day! All your comments are greatly appreciated!

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

are going to be crucial here. You need to bring her as fast as possible to a Brain Cancer Center like, UCLA, the cleveland clinic, Duke, NIH, hopkins, MD anderson, etc.. Time is of the essence. Get a copy of all her scans and make multiple copies. Send them out. Be on the phone 24/7 until you have an appointment with a surgeon at a Brain Center who his willing to consider surgery. Book your flights and go. Some people on this website have lost their loved one in a month because of GBM; I am not saying this is what going to happen to your mother in law; I just want you guys to act fast, really really fast.

Best,

keep in touch

Julia

butterfly2811
Posts: 7
Joined: Oct 2011

Thank you for your reply. We are acting as fast as she will let us. Do you know anyone specific at any of those brain centers?

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

I know it is difficult to hear and accept these diagnosis....in searching for someone, anyone to do a surgery is a very natural response but remember, surgeons love to do surgery and when a surgeon says, no way.....there is a reason. You can eventually find someone who will go in and try, but the cost will be great and the outcome will ultimately be the same. That is the grim truth of this disease. If she is a biopsy confirmed GBM that is located in an eloquent area of the brain....ie; thalmic, centrally located....then you are best to leave it untouched. Even if some brave doctor puts her at risk of going in, they cannot get it all....period. Even a total resection leaves cells behind has the same diagnosis. You don't want to take someone who is cognitive, functioning and able to spend quality time with their family and make them a vegetable for a surgery that will not and cannot cure them.

I'm going through this with my dad.... we sent his films to the brain centers and they all agreed, you do not, under any circumstance operate in the eloquent areas of the brain on a GBM, while you might gain 4-5 months survival, it will most likely be a very low quality of life.....lower grade tumors are a different case all together and you will find many people giving advice to GBM patients that do not have a GBM...fortunately for them, they have a better prognosis....

I do not mean to dash your hope, but sometimes looking at the truth and focusing on family, quality and treasuring every minute can be the miracle....you will find many caregivers on here whose loved ones had inoperable GBM and in most cases at the end of this devastating road they will say they wish they had done less and focused on the time at hand than running frantically to every treatment out there.....every treatment has consequence and you have to look closely at the truth of it and if it's worth the quality of life spent vs. gain....

I have many studies, research and information that is geared specifically to inoperable GBM's and it has been hard to find....most studies are skewed with young, operable people who have a better prognosis to begin with. Watching my father and my cousin both currently battle this disease and having watched my best friends mother die of this 5 years ago....I've seen more than I want. If you need to talk or need information I'm here...

I wish you and your family the best,

Janelle

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

You are so right watching the end coming near has been so hard to face.I knew in the begining there was no cure. I am just holding on to every minute and just telling her how much I love her and that she is the very best sister ever...

Beckymarie
Posts: 358
Joined: Aug 2009

I agree with your posting...quality over quantity. We went through the GBM nightmare with my husband. His too was inoperable and we were told this by a second and third opinion. Hope is so very important. With this kind of diagnosis, it is all we have. But false hope is frustrating and unproductive. If I knew then what I know now, I think we would have approached this disease differently. You are right so much of the information is skewed..operable vs inoperable, young patients vs. older, GRII vs GRIV. We have lost four young people from this disease in our small town in the last year and a half. Hopefully there will be a cure, hopefully soon.

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

Becky,

Don't you wonder and question the low statistics on 6 out of 100,000 people getting this disease? In addition to the family and close friend it seems like in 2 months I was told by 3 people at my class reunion that they have family members with this disease...my neighbors boss died 5 months ago and the stories seems to pop up weekly....either its much more prevalent than stated or I'm just coming in contact with all these people by freak chance. I'm starting to become a little paranoid...so many questions....how small is your town and have people begun discussing what might really be going on?

Beckymarie
Posts: 358
Joined: Aug 2009

When my husband was diagnosed, we were told 3 in 100,000 people get this type of tumor. Oddly, 4 people have passed from GBM's in our town in the past 15 months. Personally, I feel cell phone use is a contributor...many would disagree with me. I too hear of so many people who have or had this cancer...young and old. As cancer overall is on the rise, I would guess the environment is a factor.

connsteele
Posts: 232
Joined: May 2011

Jannelle...I appreciate your comments. But it is such a hard decision: fight this disease tooth and nail or accept the diagnosis, be at peace and try to make the most of every day we have? We didn't get a second opinion for our son (age 34, dx AA3/GBM on 4-13-11). At the time of his diagnosis and surgery (partial resection), he was in a major metro hospital (Washington DC area), whose docs networked with NIH and Johns Hopkins, so we felt he was getting the most current and effective treatment available. Yet there are times when I wonder if we should have pursued a second opinion as to a more aggressive surgery or go for a clinical trial. But the idea of going through the stress, exhaustion, and expense of traveling, far from supportive family and friends, to navigate through yet another medical bureaucracy, was just too overwhelming, during a time when we were all pretty much spent emotionally and physically from all the stress. We have since moved him back home with us in Ohio, and he is going to Ohio State's James Cancer Center, which is also affiliated with NIH. Almost six months later, I am coming to accept our son's diagnosis and want to be at peace with it, so I can enjoy our time together. But I do applaud those who choose to fight through clinical trails. This will be the only way advances and hopefully a cure will come about. Afterall, how long ago has it been since Temodar was a clinical trial? Our son gets his first post radiation MRI this Wednesday. I am starting to get really anxious about the results. If the docs say things are getting worse, we of course will support and leave it up to our son to decide to what extent he wants to continue fighting. If it were me, I would probably go for quality.

butterfly2811
Posts: 7
Joined: Oct 2011

Janelle, I understand what you are saying, and I do totally believe in quality time over quantity, but I have read and heard so many stories of surviors. I just cannot give up on her. I am not saying I am going to jump at the chance for surgery or clinical trial. But my ears are open and I want to hear what the specialist have to say. This all just feels like a bad dream. To look at her (besides the bx site on her head) you would never know anything is wrong. She is acting like her normal self.

butterfly2811
Posts: 7
Joined: Oct 2011

Janelle, I understand what you are saying, and I do totally believe in quality time over quantity, but I have read and heard so many stories of surviors. I just cannot give up on her. I am not saying I am going to jump at the chance for surgery or clinical trial. But my ears are open and I want to hear what the specialist have to say. This all just feels like a bad dream. To look at her (besides the bx site on her head) you would never know anything is wrong. She is acting like her normal self.

butterfly2811
Posts: 7
Joined: Oct 2011

Janelle, I understand what you are saying, and I do totally believe in quality time over quantity, but I have read and heard so many stories of surviors. I just cannot give up on her. I am not saying I am going to jump at the chance for surgery or clinical trial. But my ears are open and I want to hear what the specialist have to say. This all just feels like a bad dream. To look at her (besides the bx site on her head) you would never know anything is wrong. She is acting like her normal self.

sadinholland
Posts: 237
Joined: Apr 2011

gg

jeffballew
Posts: 9
Joined: Apr 2010

I know First Hand the the Preston Robert Tisch Brain Tumor Researc Center at Duke is Top Notch. I had a Grade II Astrocytoma advance to a Grade 4 GBM and they aren't nervous at all. MY Oncologist has many cases that are inoperable. Mine was operable, but she tells me these stories of survivorship, some 12 years or more with inoperable tumors to give me hope and keep me positive. My goal is 30 years!!!

butterfly2811
Posts: 7
Joined: Oct 2011

Jeff, this is wonderful news! Not only for you, but for my mother-in-law also! I would love to know the name of your oncologist. Also to you or anyone else out there, how do we go about sending her scans and reports out to other dr's or hospitals. Do we just call the hospital or group and ask if they are willing to take a look at them? We would love to have your oncologist or someone else at the research center take a look at them first, but we are willing to travel first also if need be. Thanks for all your info and Keep up the Fight Jeff!

Nell37
Posts: 3
Joined: Sep 2011

I was at a treatment center for GBM for a loved one, where treatment is carried out with sequentially programmed magnetic fields. This is a new line of treatment where only the cancer cells are targeted and the healthy cells remain unharmed. The treatment is painless and there are no known side effects. Trials have been conducted and especially in the case of GBM, much longer survival periods have been recorded. I think it would be a good idea to look for a center that treats with sequentially programmed magnetic fields. Hope your mother in law feels better soon.

msomawas
Posts: 22
Joined: Aug 2011

I highly recommend Duke's Brain Tumor Clinic.

Justme24
Posts: 1
Joined: Oct 2011

My dad has his 2nd appt at Duke tomorrow. It's the follow-up to his biopsy last Friday.
Grade IV, inoperable glioblastoma.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

My thoughts are with you as you travel down this road. You are not alone we are all traveling on the same road...Tell us your story...

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