GBM IV in my daughter 5 years old

cindysuetoyou

mgreggsmith said:

Cindy's David
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

Hey, neighbor!
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

madisonmuzz

LuckysMom said:

This is so wonderful for me
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

sad story
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.