GBM IV in my daughter 5 years old

mgreggsmith said:

Suhana
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

mgreggsmith said:

Sister - I
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:

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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."
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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

4theloveofmysis said:

Gregg
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 said:

Sister - III
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.

cindysuetoyou said:

OHSU etc.
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