could use some positive news

The more research I do online regarding Stage IV Glioblastoma, the more discouraged I get. I am looking for some positive stories of survival perhaps from someone like me, a 27 yr old male.

Hi. My son Andy is 27 and is doing ok... he had surgery last January. It's god awful, for sure, but there is hope... he is now on Avastin and Carboplatin and it seems to be working.

And have you looked at www.yasg.com ? there are lots of survivor stories. And Lorre who posts here works at a clinic in CO and says every year they have a survivors party and every year there are more people there, many over 10 years out.

The thing to remember is that while the lousy average is whatever, 14 months? even though it is meaningless for any one person, HALF THE PEOPLE LIVE LONGER! And if you picture a graph, some of the half who live longer can live MUCH longer... the curve or tail of the graph line goes way out. You could be out there! Especially if you're young.

Also, I have heard that the 14 month average really needs to be updated... that was pre-Temodar. Has anyone else heard this?

How are you doing? Do you feel like you are getting what you need in terms of information and care?

And how are your parents doing? I would like to know what another 27 year old thinks of parents at a time like this, LOL! My son is living with me for the first time in 10 years because he kind of has no alternatives. I have to take him to his chemo days etc... but try to give him lots of personal space and power over his own life... We get along really well but I know he just wishes he could be back in CA living his life. Hit the rewind button.

Hope you'll get many years of good scans and get to feel like a 'normal' person again. Sure will appreciate it!

Best, Sarah

mother of Andy 27 dx gbm/pnet 1/09

hiya....online research is grimm as is most of the outlooks the docs give at diagnosis...my advice dont listen or look , yes be realistic a gbm is not good , but it is also different for every body and yes Sarah is right the average of 14months was pre temodor...my daughters oncologist said it is now 4 years and that is only the most recent data,for young people such as yourself because it is so rare they do not really know....the hospital docs gave my daughter 18months as her gbm was inoperable...but 18months on and she is here and fighting fit...yes she still has her tumor but it is a lot smaller , and she has been off all medication since dec08, and has enjoyed this year to the full travelling to greece , ireland and eygpt to see the pyramids and ran a half marathon for charity!! dont get me wrong she is not the person she was before this nightmare , she has had to move back home and give up her dream to be a lawyer , she was about to sit her finals when the seizures began...but she is adapting and is still here , most days happy ,most days hopeful(she is 24 by the way ) and i am sure will find a new path in life to follow...never give up hope , each and every day is a blessing and soon they will find a cure for this so just you hang in there , a battle at times yes, but one worth fighting ...much love and strength to you xxxxx

Hey, listen to these wise people. Every single one of us is different. I have children your age and have survived over two years, very few deficits, and 3 surgeries. Not to mention the radiation and 18 months of chemo. My motto is stay as active as your body allows you to be. Don't be afraid of research--if you do enough you'll be able to see the useful over the faulty. I am not a Pollyanna, I know there is not a happy ending to this, but I'm here today, and really what more does anyone have? Youth is on your side--and remember that there are many long time survivors of gbm. The yasg dite is excellent for young people. They won't let me join LOL, so the new generation can laugh and talk among themselves, in language you understand. Try it out. And keep on fighting the good fight.

I actually live with my wife about an hour and a half away from my parents so they're not really involved in this process. I feel bad for them because I know they want to do more but because we don't live close to them but sometimes I feel like perhaps this is better because they don't have to see what I go through every day so they don't experience as much of the stress and hurt. I know that it would be very hard on them to see me this way.

My wife has been an amazing care taker for me. So I've been in good hands.

Hey there,

How 'bout some good news from someone twice your age?  Check out our caring bridge site and say hi:

http://www.caringbridge.org/visit/stevecalloway

You have the advantage of youth and strength, but a deep faith, good meds, and a positive attitude can't be beat.

Take care,

janni (wife of Steve gbm 11/07 - fulltime paramedic)

This link really lifted me up. thank you so much.