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glioblastoma

wizardofhaas
Posts: 2
Joined: Mar 2012

My brother was diagnosed today with glioblastoma, neuromd said prognosis is poor, I need info please from survivors!!

Scottgri
Posts: 44
Joined: Mar 2012

I was diagnosed with grade 4 GBM 3/28/11, was given 9 months. I'm now back to work full time and feeling completely normal. I found some experts at Duke University who have provided me a plan of gliadel wafers, radiation and now Temodar and Avastin. No sign of recurrence and I feel great! It hasn't been easy to continuously muster the courage to fight, but fight it is and fight to win!!!

There IS Hope out there, but I had to look for it, and I found it at Duke.

Delfino
Posts: 2
Joined: Jan 2012

I imagine your journey through this ordeal is documented on this website.

How can one view all your posts to learn about gliadel wafers.

Thanks Delfino

Scottgri
Posts: 44
Joined: Mar 2012

I recently found this site so there isn't a lot of history for me, I'm not sure how to surf the posts either...

Gliadel is a targeted chemo drug they inserted in the cavity left after the tumor was removed. Odds are, if it comes back it will be in the same place, so this drug goes after any left over cells not taken with the resection and tries to prevent new ones from forming. I've seen this procedure listed at several cancer clinics. It was the first step of my trial, then the radiation + temodar, then Avastin + temodar.

Gordj
Posts: 1
Joined: Mar 2012

I had surgery July 2010 and am doing fine. There were some small ( they look small looking back ) issues. Part way through radiation, after I came off the steroid I became very tired and slept a lot. I put on weight due to the steroids and have had difficulty losing it. A positive attitude was a powerful weapon.

I can imagine your concern and uncertainty. Take heart. Talking with my oncologist last month he talked about the more positive results now and I a am feeling good.

My stage 4 GBM was not part of my life plan but I am working with it and I would encourage you to look at what you are facing today and don't let tomorrow concern you. I know that sounds very cliche but it helped me through it.

My thoughts, prayers and best wishes to your whole family.

johngiustino
Posts: 26
Joined: Apr 2011

If your brother has not had surgery look into tumor banking - saving the tissue in a way it can be used for vaccine production or biomarker analsysis. There is a company on the east coast who will work with your doctor to do this. I cannot emphasize enough how important this is - otherwise they will prepare your tumor for pathology which is great for the pathologist but greatly limits your options.. You must look into this before surgery. Better yet, consult with an experienced neuro-oncologist and ask about vaccine based clinical trials - they seem to be the closest thing to a cure, though you will rarely, if ever, hear that word used in conjunction with a GBM treatment. I am treated at UCSD by Dr. Santosh Kesari. He is a strong believer in matching you up to the best clinical trial. I was diagnosed 18 months ago and only received the standard treatment because I was with another doctor at another hospital who did not know my options as a GBM patient. Nevertheless, I am here, working a full day, every workday and spending quality time with my family. I have actually finally had days where I feel "normal". There is hope - the first year was tough, on me and my family. I was pessimistic at first but look into your options and find a NO who can explain them to you. You may also want to look into the Toca 511 clinical trial.

Good luck and stay positive.

Best regards,
JG

chuckman
Posts: 1
Joined: Apr 2012

My Dad(Age 69)Was Diagnosed with stage 4 Glioblastoma and kidney cancer on 1/23/12 after having a seizure and a bleed on the right side of his brain.He had a total removal of his two tumors on the right side of his brain and had a pacemaker put in(not related to GBM) .After the surgery he temporarily lost the use of his left arm and had left leg weakness.He was placed in a rehabilitation hospital and regained the movement and use of his left arm after about 15 days.Soon after he began radiation and chemo treatment(chemo is Temador) at FoxChase cancer center in Philadelphia. fifteen treatments total.I also started my Dad on Dr.Johanna Budwigs diet of flaxseed and cottage cheese along with other supliments.You can learn more about it by Googling "the budwig diet"Their are many diets but this one caught my attention and seemed practical.Note:We did stop the diet during his radiation treatments.Today which is 4-23-12 I'm pleased to say that my dad had his Post radiation and chemo- Mri and no sign of worsening of his condition.Note; that it's hard to gage how well the chemo and radiation worked with the first post Mri as the brain is still healing from the chemo and radiation treatments.BUT!Their is no spreading or worsening at this time.My Dad never got sick or lost his appetite during Radiation and the temador.He gained twenty pounds!Attitude is important.Try and stay as positive as possible.(Easy for me to say right?)I allow my Dad to be in whatever mood he is in.I just try to make a point to make him laugh and get his mind off the illness.Just be their for them.If your a care taker make sure you are taking care of yourself.You aren't any good to your loved one if you aren't well yourself.:)

kulaken
Posts: 14
Joined: Sep 2011

Depends on the grade and location of the tumor , I was diagnosed back on Aug 4 th 2011 , with a 3 cm tumor on my right visual horn , had grown to 4 cm in 28 days ,, i was put on steroids to shrink the edema and relive some of the pressure that was causing some serious side affects , cognitive skills , balance , bumping into things , couldn't think straight , nor remember daily activities ,,

After 20 bouts of rads , a gammaknife procedure , and 8 months later , im feeling some hope for my future ,, this type of diagnosis can be devastating , i am now feeling better and getting stronger every day ,, i wish you luck with your brother , Keep Hope , even when the Dr's don't seem to have the answers ,, I never got , and still haven't got a straight answer from none of them , i have seen 4 different oncologists , 3 neurosurgeons , and all they say is everyone is different ,, hard to tell how one will respond to similar treatments ,,

Keep hope , stay positive as can ,, and get through this hard time .. Good luck

Ken

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