A vastin stopped working:( CCNU

Hi Ellen,

I'm rooting for you.  You're young, and it sounds like there are other options out there.  Getting things in order gives you peace of mind to focus on fighting this monster.  I'm glad you had a chance to go to Disney and spent precious time with your little ones.  That's so wondeful!

Hang in there.  Celeste

Ellen … persistent PRAYERS … YOU have mine, in line! May many moments of pause steal sweet comfort with those tiny hands and igniting smiles of your little ones.  We all live far in distance … but please know and feel how close you are in heart to me and many. HOPE, dear one, HOPE! De

Ellen I agree with Sarah (heart and soul), the combination of Avastin and CCNU might be the way to combat this new finding.  Ask your N.O. what they think is the best way by their research of how each medicine works and how the body responds when taken off of each medicine.    The fear is so much to have to accept it can make our panic button stick.  I am praying for strength and a long survival for you with your family.  In His sincerity, Jan

Ellen,

I hate to pop in here (I am on the kidney cancer message board) but I saw the title.....is it possible that your Avastin stopped working because you got some of the "fake" Avastin that was talked about on the news last night?  Here's a link to an article about it, telling how to distinguish if you got the real thing or not. http://www.reuters.com/article/2012/02/16/avastin-idUSL2E8DG

Best of luck to you!!!!!

My mother has a grade IV GBM. 1st removed 8/2010, chemo pills, radiation etc....reoccurrence 11/2011, 2nd removal 12/2011, went right into an Intra-Arterial (IA) Avastin clinical trial procedure Jan 6th (which infuses it right into the brain via a catheter so its 50% more dosage then IV) and then one Intravenous (IV) treatment of the same drug on Feb 8th. MRI on Feb 14th showed that the tumor was back and the size of an orange already, so the Avastin did not work on her tumor. Her surgeon Dr John Boockvar at Weill Cornell was surprised by this. The good news was, that the doctor had sent her 2nd tumor to a special lab (Caris Life Sciences) and tested the tissues against different drugs. She has a highly targeted protein EGFR (epidermal growth factor receptor) which is located on the surface of certain cells that responded to a particular "inhibitor", the drug Erlotinib (generic), brand name is Tarceva. Today mom started the Tarceva clinical trial with a 28 day cycle of 1 pill a day (150 mg ). The drug is commonly used for lung cancer and pancreatic cancer so it’s not covered for GBM….the trial provides the meds for free however.

Here is a summary of the Tarceva trialhttp://clinicaltrialsfeeds.org/clinical-trials/show/NCT

Here is the actual trial on the .gov website http://clinicaltrials.gov/ct2/show/NCT00301418?term=tarceva+for+GBM&rank=3

Good luck!

I am saying a prayer for you now; strength and hope. You know how this stuff is, its crazy, hopefully this ride will go back up, and the cancer will just STOP. I pray in the name of Jesus , that it just STOPS. You just keep in touch so everyone here can support you , especially in prayer

God bless you, you are a fighter

Cathy

Ellen... you are so strong... you use that next tool and then the next if need be.  I am so proud of you and your strength.  I am holding you close in prayer.

Betsy