Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

I've beenon avastin and cpt 11 since june 2011.  My last mri showed no more tumor nor any more tumor growth.  We have been onig to Duke university for cosnultation.  THey recomended the avastin with cpt 11.  Side effects arent tarrible.  Mostly just tired.  DUke does alot with GBM brin tumors.  I've heard alot of good things about MD Anderson and would have gone there if not for DUke University.  I did hae a surgery in March of 2011.  I feel good about the treatments and th results of them.  Just hoping nothing grows back.  They are keeping me on same treatments unitl June.  In june they plan on new MRI and depending on results plan to reduce the Chemo at that time.  Best of luck and prayers are with you.  Keep your faith strong.  Seems to work better than anything else.

my son has beene having MRIs every six weeks since the beginning, last Jan.  Has had two surgerys, it came back double the size, right after radiatiion and chemo, and has been on cytoxin, avastin, temodor and thalidimide, since after he had his radiation and chemo.  He is 42.  Just tired all the time and sleeps alot, nauseated.  Blood count now down to .5.  Has been taken off eveything except avastin.  Seemed to feel better when I went down at Christmas than a few weeks ago, when he was hospitalized for possible pneumonia.  Just praying he can get blood count back up and stay strong enough to continue treatment. No treament means stronger chance of the tumor coming back.  I don't think he is strong enough at this point to go through another surgery.  Good luck to you also, and yes we are keeping the faith and have lots of prayers

Haven't had any come back yet but Doc said if it does we would do re-section and re-start of Chemo.  Keeping my finges crossed and pray it dosen't come back.

Best of luck, I will be sending prayers your way.

Dennis

Went to Duke last month with MRI scans in hand.  Doc at Duke looked aat the scans, couldn't find the old tumor nor any new tumors.  Very positive visit.  He said lets look at doing another MRI in March then dependig on wha it shows we will do pet scan and MRI in June.  If things show good a the March or June visit we will look at eliminating one of the Chemos, On Avastin and CPT 11 now. Keep the Faith.  Duke Folks are great.  I would take of send thm ahead of tiem, a much treatment an diagnosis inormaiton as you can.  I'm sure your current Doc's will help with that.

MY prayers go with you, Kep your faith strong,tough and frightening road ahead.

Dennis

On Jul 09, 2011 12:05 PM sandrafiske wrote:

My name is sandy my husband has just been diagnose with glioblastoma multiforme does anyone know anything about clinical trials has there been anything that has helped they want to put him on avastin. please anyone that can help our family thru this horable time he has had 3 tumors but the last being the worst if any of the survivors out there can tell us what was ur treatment

 

This is a update on my husband Dan He had the surgery in July 2011  the tumor came back in august then they shrank it a couple of months with avastin it started growing again in nov so they stopped the avastin for a month then took the tumor out on dec 30th this is a really bad tumor dan had multiple siezures grand malls and constantly the silent ones they now have the tumor out and we have been dealing with siezures untill a couple of days ago they have admitted him again into the hospitol for high fevers and alot of head pain he has a infection  so they put in a drain tube today he is doing very well  compared to the last month

Sorry about your husband.  How old is he??  My son is 42.  We started this journey Jan. 2011.  He had the first surgery Jan. 6, 2011, radiation and temmador.  It came back double to triple the size and we had the second surgery April 9th, 2011.  Medicines have kept it away so far.  Has been on avastin since  last surgery.  Hasn't caused any bad effects that i'm aware of.  The thalidmide did burn him and had to go off it.  He is on avastin, temmador, cytoxin and a new one that I can't remember the name of.  The new one made the blood count go to .5, so they took him off everything.  Now it is back up and he is back on them.  He was in the hospital the last of Nov. for possible pneumonia.  It wasn't.  Has been really nauseated and sleeing alot.  They had taken him off of the steroids.  Every time they do there is an episode.  He was back on it one day and could tell an amazing difference.  Right now he is feeling better and able to be up and around.  A 100% difference from the first of Dec.  Hope your husband does better

Can you suggest what all treatment you have taken.

Regards

Sanjeev

you may consider using homeopathy

what is that