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GBM IV in my daughter 5 years old

Abraham100
Posts: 9
Joined: Apr 2011

My daughter 5 yrs old was found to have Supratentorial Glioma in the CT scan. She was operated with complete removal of the tumor last week. The histopath report shows Glioblastoma GBM IV. The doctors are reviewing the reports and would shortly call us for the suitable treatment. Would request inputs from members... Tnks Abraham

Beckymarie
Posts: 358
Joined: Aug 2009

I'm sorry for what you and your family are going through. My husband was diagnosed with a stage 4 GBM inoperable in March 2009. It was a very difficult journey. It seems that those who can have the tumor debulked have a better prognosis. My husband passed in June 2010. There are many clinical studies being conducted on brain tumors. We were treated at UMass Medical Center is Worcester which is a teaching hospital. I think this is helpful and puts you in touch with new clinical trials. I wish you and your family all the best in this struggle

Abraham100
Posts: 9
Joined: Apr 2011

Thank you so much for the reply.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I am so sorry that you had to hear that news. My daughter was 12yr old when she was diagnosed with an Anaplastic Astrocytoma grade 3 brain tumor. It has been the hardest thing I have ever had to deal with. It has been a little over a year now and she is doing really good. I think kids can bounce back better than adults. As hard as it may be right now, try to think positive. A friend once told me 'Think positive and positive will happen'

Abraham100
Posts: 9
Joined: Apr 2011

Thanks. Am really hopeful still. Praying that things get better.

siurzua
Posts: 4
Joined: Apr 2011

I will be thinking about you and your family, hoping for good news..

mgreggsmith
Posts: 22
Joined: Mar 2011

Abraham,

I am so sorry for your daughter's suffering. This is so unfair for a child. I'm 71 and it doesn't matter for me. All I can offer is this. I was diagnosed with a grade IV glioblastoma multiforme in October 2006. At the time they said I has as little as 3 months and as much as 18 months, with 12 months being their best guess. But I didn't die and I'm still doing fine. I had surgery, radiation and take a monthly five-day course of chemotherapy in pill form. Notwithstanding the statistical tables, there are outliers. There are stories of people living normal lives after a grade IV GBM diagnosis. Don't give up hope. Draw on everyone you know to pray for your daughter. What is her name so we can send her positive energy? Miracles do happen.

Gregg Smith

Abraham100
Posts: 9
Joined: Apr 2011

Thanks Gregg. Please pray for Suhana. I trust all will be right...Rgds Abraham

mgreggsmith
Posts: 22
Joined: Mar 2011

Abraham,

I will pray for Suhana and urge everyone who reads this string to pray for Suhana and urge their churches and temples to pray for her.

I believe in the power of pray, or the power of the collective unconscious, or whatever it is. But I have seen it work.

All the best to Suhana, you and your family.

Gregg

Abraham100
Posts: 9
Joined: Apr 2011

Dear Gregg,

The new report states that its not a Glioblastoma but some embroyonal tumor. The details are yet to come. Please pray for my daughter.
As you advised I have requested all to pray for her. May God bless you and your family.. Rgds Abraham

mgreggsmith
Posts: 22
Joined: Mar 2011

Abraham,

I'm a real estate developer, not a doctor. My medical opinions don't carry much weight. But at our Easter dinner Sunday, with family and friends, we will offer a prayer that Suhana's condition can be contained and healed and that she lives a long and happy life.

All the best,
Gregg

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

prayer for little Suhana. Im a nurse and I dont have any answers. I give chemo, so I know a lot about that...and now my sister has GBM4...Glad you are doing well Greg. Would like to here your story. Looking for so hope here...

mgreggsmith
Posts: 22
Joined: Mar 2011

I posted the text below on the brain tumor discussion board some time ago. I will look at my file add a follow-up post.

Here is what I posted:

+++++
In October 2006 I had a seizure and passed out. After a series of tests it was confirmed that I had a brain tumor. I had brain surgery and was diagnosed with a malignant grade IV glioblastoma multiforme (GBM). I then had radiation and monthly chemotherapy in pill form with Temodar.

At the time of my diagnosis the doctors at Oregon Health and Sciences (OHSU) in Portland, Oregon speculated I had 3 to 18 months to live, with 12 months being the norm with this diagnosis. (Senator Kennedy, with the same diagnosis lasted 14 months.)

It is now out 53 months since my diagnosis and I am doing fine. I have MRIs every four months - and all have been clear. There is no indication that the tumor area is active. (By the way, I wondered if the original diagnosis was incorrect, so I asked for a 'second opinion.' A team at OHSU reviewed my brain tissue - and the original diagnosis was correct.)

Apparently I am in a very small group of 1% - 2% who have lived this long with a grade IV GBM. However, there are cases of people living 5, 7 and 10 years with this diagnosis. The doctors at OHSU are mystified about why I am still alive. There are the mystical theories. And there is the scientific theory. The later is that there is something about my personal genetic makeup that allows all the therapies to be unusually effective. But as one person said recently about my unusual status: "We don't know what we are doing. This is uncharted ground."

What I try to do is live my life with intention. I try to keep my stress low. I try to eat right. And....I have two glasses of pinot noir each evening! As Winston Churchill said: "Never, never, never give up."
+++++

For those following this string, over Easter dinner we held hands around the table and prayed for healing and recovery for five-year-old Suhana.

More to follow.

Gregg

mgreggsmith
Posts: 22
Joined: Mar 2011

If you look at a bell curve chart on a grade IV glioblastoma multiforme (GBM), the picture is pretty grim for the first two years. But after that there is a long horizontal 'tail' on the chart where some people seem to live a normal life for many years. When Sen. Kennedy was dealing with his tumor they interviewed a female doctor in New York City for national TV news. She had been diagnosed with a grade IV GBM ten years ago. She was still working and was doing fine. So there are examples of survival.

My neurologist recent said that I’m doing so well after four and a half years there is a chance I will live a considerable time (with medications) and perhaps ultimately die of something else other than a brain tumor. In the meantime I’m doing all I can to neutralize the tumor. I would urge any GBM patience to take your meds, eat well, exercise, relax, meditate or pray and don’t give up.

On the April 1 ‘Science Friday’ program on NPR there was an interview with Dr. Siddhartha Mukherjee. Dr. Mukherjee said researchers are working on new drugs that activate the immune system to fight cancer cells. By all means listen it. The website address for the program is:

http://www.npr.org/2011/04/01/135042052/beyond-the-war-the-future-of-cancer-treatment

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

Thanks for sharing. This is such a scary road we are traveling...Its hard to know who to trust.I think we will be firing the oncol. Doctor this week. We have only seen him once and he doesnt seem to care. He just let my sister run out of her chemo, and didnt refill it. The radiation doctor is wonderful.
In what part of the brain was your GBM? How much of it did they remove?

mgreggsmith
Posts: 22
Joined: Mar 2011

My grade IV GBM was on the left parietal lobe of my brain, the speech center. I have difficulty with some words. I can ‘see’ them in my mind but I can’t say them. If someone else says them then I can say them. I have some difficulty with numbers. If someone leaves a recorded telephone number I have to go over it several times to get it all. I have lost some short-term memory. So there is damage from surgery, radiation and chemotherapy. By I’m still here.

I had one of the best neurosurgeons in the country, Dr. Johnny Delashaw at OHSU in Portland. After surgery I was referred to Dr. Edward Neuwelt, also at OHSU. Neuwelt is one of the best neuro-oncologist in the country. He wrote the medical text book that most neuro-oncology medical students use.

It is critical to get the best docs, no matter where they are. DEMAND the best. It is yours or your family member’s body, not the doctor’s. I'm on Medicare and Blue Cross - and none of my docs complained about my insurance.

They caught my tumor early. It was still relatively small and on the surface. The surgery may have got all of it. Delashaw was pleased. He said he got 'clean margins.' The problem with a glioblastoma multiforme is that t here are all these little glial filaments throughout the brain that can generate a new tumor. It is like a dandelion. You can lop off the top and then there are roots down in the brain. The docs said I had a "primary" tumor, which means that if a new tumor recurs it will likely be at the same spot (like a dandelion). I suppose that is the good news of the bad news. Do some research on glial cells on Wikipedia.

Every GBM tumor is different. A person can only pray that he/she had good surgery, good radiation, good chemo, good docs and good support. If you do not trust your oncologist, you should fire him and get someone else. Some docs are excellent and some aren't, just like in any profession.

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

My sister's is in the right perietal lobe. its less than 2cm but they said it cant be removed. There would be to much damage and that it wouldnt buy that much more time.They said that a whole team of doctors all agreed. Now that we have already started the radiation, temador and avastin, Im wondering if we shouldnt check else where for surgery, or is it to late for that. Ive read about people that have much bigger tumors and only get 50,60 or 70 %. I dont know I just am grasping at any little hope....

Beckymarie
Posts: 358
Joined: Aug 2009

I caught Dr. Delashaw's name in your posting. My husband was diagnosed in March 2009 with a stage IV glioblastoma. We saw doctor's at UMass in Worcester, MA and also at Brigham & Women's in Boston. We were given the same info: the tumor was inoperable and my husband probably had a year or less. My sister-in-law had brain surgery done by Dr. Delashaw and she asked him to review my husband's case. All records were sent to Delashaw, unfortunately his prognosis was the same as the Massachusetts doctors. My husband passed 15 months later. I always appreciated his taking the time to help us as I know he is a very busy man. You seem to be one of the small percentage that is beating the odds with this horrible disease. Best wishes.

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

My 27 year old son David is battling anaplastic oligodendroglioma. He had a total resection by Dr. Delashaw in May of 2009 and is now being seen by Dr. Neuwelt at OHSU. We were referred totally by luck to Dr. Delashaw and Dr. Neuwelt. We were in total shock when it was discovered that David had a brain tumor. By the grace of God, David's local doctor referred David to a local neurologist, who called Dr. Delashaw personally and set up an appointment for David with Dr. Delashaw that same day. We didn't have time or know enough to even try to check out other neurosurgeons.

I cannot say enough good things about Dr. Delashaw. He fit David into his incredibly packed surgery schedule and operated two days after we found out that David had a brain tumor. (He operated the day after he saw David in Portland.) He removed 100% of the visible tumor and left David with no deficits whatsoever. Before the surgery, I asked Dr. Delashaw what David would be like after the surgery....would he have issues, stroke-like symptoms, brain damage? He told me that David would be exactly the same as he was before the surgery. And he was right. We needed to hear something positive in those days. We needed it very badly.

Dr. Neuwelt has been a little harder for me. He is definitely a brilliant doctor--we believe one of the best in the country--and we are very happy with his aggressive treatment plans. But in the beginning, he was so negative about David's chances. When he first told us what David had, I felt that there was absolutely no hope and that we would be losing David very, very soon. But here we are, almost two years to the date of diagnosis, and David is doing really, really good. Dr. Neuwelt evens seems to be cautiously optimistic. At our last MRI/checkup appt. he talked about maybe keeping David on Temodar for 7 years. When David was first diagnosed, Dr. Neuwelt told us that the median life expectancy was 3 to 5 years, possibly two years. So talking about 7 years from now is a big encouragement.

Even though David has a different form of brain cancer and his situation is different than you all on this thread, I still want to ask you to please fight really hard to hang on to hope. There are some people who do survive all forms of brain cancer. It does happen. Whenever I feel discouraged and afraid for my son, I re-read some of the posts on this site, and it encourages me to have hope and to hold on and to keep fighting.

with love and prayers for blessings and healing,
Cindy
in Salem, OR

mgreggsmith
Posts: 22
Joined: Mar 2011

Cindy,

Don't worry about Dr. Neuwelt. He is fine. He is a brilliant, rumpled, introverted researcher. Students come from all around the world to do fellowships under him. I have met his American, Nepali, Hungarian, Azerbijanian, etc, fellows.

Dr. Neuwelt is cautious because he really does not know the fate of any individual patient. Looking backward he knows the sobering statistics. Looking forward, who knows? It is a mystery. After my first appointment with Dr. Neuwelt, one of his head nurses pulled me aside and said that if there was anything I wanted to do in this life, do it now. She thought I had 3 to 18 months to live with 12 months begin a good guess. But it was a guess.

Now, four and a half years later, when I have an appointment with Dr. Neuwelt, his nurses joke when they see me coming: "Are YOU still alive!?" Then we laugh.

I am sure doctors are in a tough bind. Patients want certainty. But there is no certainty. If the doctors tell you "Everything will be fine" they may give a patient false hope. If they emphasize dire possibilities they may frighten a patient with years of statistics. But it is important to remember that therapies are improving every year. Today is much batter than five years ago. Five years in the future, things will be better than today.

Here's what we need to keep in mind. Every person is unique. Even the best doctors cannot give you absolute certainty. So you need to hold things in a state of hopeful tension. You may die soon. But then again, you may not. So live as if you going to live a long time, but also get your life in order. We all should be doing that in any case. Life, at its best, is mortal. I'm always amazed at how few people have good up-to-date wills. Do they think they will live forever?

I have one pet peeve. Patients who are frantic sometime search for research "trials." Don't do it. Those trials are designed to give doctors a statistical base as they try things out. But the patient is a human guinea pig. I would stay with the standard therapy with a top-notch doctor, like Dr. Neuwelt. He will give you the up-to-the moment medical information. You'll get the best there is. Don't run off somewhere and experiment!

All the best,
Gregg in Keizer, OR

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

Hi, Gregg!

I just re-read your post and I can't believe that I never responded! I thought I had...I wonder if I forgot to say "post this comment." Anyway, your post is a huge encouragment to me! Thank you very much for posting.

In one of life's little coincidences, I just happened to see a new physican's assistant at my doctor's clinic. I told her about my son, and said that he was seeing Dr. Neuwelt. She had worked in Dr. Neuwelt's office---I think as an intern--and she knows Dr. N well. She says he is unique but a brilliant doctor...She said some of the same things you said. She says that he is very aggressive in his treatment plans...which is exactly what we wanted in an oncologist. From day one, we wanted to fight with every weapon possible. We do not regret the decision we made to stay with Dr. Neuwelt.

About your pet peeve...we are not frantically searching for clinical trials but if David was to have a recurrence, we would not rule a clinical trial out. But only if Dr. Neuwelt recommended it. Dr. Neuwelt is heading up several clinicals and if he thought David would be helped by a clinical, we would take that chance. We might not want to stay with a standardized treatment plan since we don't want the standard result---3 to 5 years. I am thanking God that at this point in time, we do not have to make that choice, since David continues to do so well.

Thank you again for your comments and your perspective...it has been a huge encouragement to me!
Love and blessings,
your neighbor in Salem, OR :)
Cindy

LuckysMom
Posts: 4
Joined: Jun 2011

This is so wonderful for me to hear. My 12 yr old boy was diagnosed with stage 4 glioblastoma brain cancer. His has spread around his little brain n down his spine. It has been 6 months since he was diagnosed. And his oncologist have told us the same 3-18 months, with 12 being the normal lifespsan even with his treatment he is going through. I have faith in God. I have so many wonderful friends and family to support us and pray for him. I believe in the power of prayer and believe staying positive is very important. My son is the oldest of my 4 wonderful children. And my babies all adore their big brother and pray for him. Your post gives me so much more hope. Thank you so much

madisonmuzz
Posts: 13
Joined: Apr 2011

I am so sorry to hear about your little boy. I can't imagine going through a GBM with a child. It is heartwrenching enough dealing with it with my adored husband. We have been married for 23 years, together for 30 years. High school sweethearts....

Please keep the faith. God is the only one who knows when time is up and we must go to heaven. Stay positive.

I will pray for you and your family.

Our medical oncologist continues to tell us, there are new medications and treatments coming out every single day. You never know, one may come out tomorrow that can cure this nasty disease. I pray for that to happen daily.

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