Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,64501,0.htm Wed, 19 Jun 2013 00:00:00 GMT Wed, 19 Jun 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 bskovborg Mon, 20 Feb 2012 00:00:00 GMT 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 cathy68 Sat, 18 Feb 2012 00:00:00 GMT 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! Chris1210 Fri, 17 Feb 2012 00:00:00 GMT 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!!!!! Midmomom Thu, 16 Feb 2012 00:00:00 GMT 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 vwxyz Thu, 16 Feb 2012 00:00:00 GMT 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 number9 Thu, 16 Feb 2012 00:00:00 GMT 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 CelPB Thu, 16 Feb 2012 00:00:00 GMT This is interesting, my husband went from 8 months of  Temodal, then to to CCNU alone without anything else and now, 4 infusions of Avastin alone. He has never had any other meds in combo with chemo or Avastin, other than anti seizure meds. It's nice to know there may be another option after Avastin, as we were told this is his 'final option', he is not a candidate for further surgery. It's been 4 years of this rollercoaster and Scott is just getting sooo tired. He is only 53, but says he feels like 83. We will get MRI results on FRiday, hoping for good news. Libra57 Wed, 15 Feb 2012 00:00:00 GMT  Hi, Sorry for your news.  We recevied the same news on 20.1.12.  My husband had been on Avastin and Campto since August 2011.  After 3 mths the 2 new tumours had stayed the same in size.  In January 2012, they had tripled in size.  Avastin and campto stopped.  The only other option was Stereotactic Radio Surgery.  Normal full brain radiation was not an option as he had had his lifetime dose with the initial tumour.  these two are too near the brainstem so inoperable.  They had joined together before the Stereotactic on 9/2/12.  It was meant to be one session but OC decided as there had been growth from 23 Jan MASK making, MRI and CT scans, he would prefer to deframent the treatment into 3 session. 1st 8/2/12, 2nd 10/2/12 and last one on 13/2/12.  Just a bit of discomfort, but no other side effects have been felt.  MRI in 1 months time.  Not sure is this may be something you may or already have discussed ith your OC.  We were so relieved that there was still something out there available to us.  Leslie has been placed on steroids for inflammation and swelling. loving wife Michelle       mccleave Wed, 15 Feb 2012 00:00:00 GMT Hi Ellen - My husband's NO told us, "we have a big tool box that we will use to fight this".  Look at CCNU as just another tool.  He also said that they can do radiation again.  I think it is ok and natural to be scared, but you have way too much spunk in you to let fear take over.    Good luck!   tromda Mon, 13 Feb 2012 00:00:00 GMT Ellen, there's always hope with the next option. I do love that they keep giving treatment plans. Your messages are so high energy, you still have much much life in you! You are living an amazing story! Keep on, sweetie. And those blessings are all around you. Patti forhim1122 Mon, 13 Feb 2012 00:00:00 GMT Oh Ellen, I'm so sorry!  I'm so glad you all had a wonderful trip to Disney!  We are actually going in mid March - wish I would have known about that organization, we were lucky to get it as a gift from my parents for Christmas.  I'd LOVE to see your pics!  Always praying and thinking of you are your little ones! Hugs! Sheri sluss910 Mon, 13 Feb 2012 00:00:00 GMT Dear Ellen, See if you can combine the Avastin with the CCNU, just to get any benefits of both together. I know it's confusing to be bombarded with advice, but we're all in this together, and care sooo much about each other. We have all become family and we want you to survive this! There are some who do... I hope with all my heart that you will!  "Getting things in order" (final wishes and what happens to our stuff and our kids) is much more fun (less freakout?) when it's academic, the sky is blue, and no one has cancer. I know it's a whole different ball game when you are seriously terrified that you will not be here. So I honor you for doing that hard work, and hope it will indeed just be academic, abstract, and theoretical, and that you'll be around to see your kids for a long, long time.  Big hugs,Sarah   heart_and_soul Sun, 12 Feb 2012 00:00:00 GMT I am praying for you.  Avastin is a great drug.  But it only works for so long and then time to move on.  So that is what you are going to do.  Move on.  Radiation can come again if you haven't had the massive protocol off the top and I see that you haven't.  Live and love each day.  It is all we have.  I am so proud of your spirit and your babies need you today.  Today is what we have.  Give us this day our daily bread.  It means a lot of things.  You are going to have an exceptional day.  So much love to you. xoxo Roxy MsRoxy Sun, 12 Feb 2012 00:00:00 GMT Hello Ellen, I'm sorry to hear about your avastin issue.  I don't recall if, or how, you handled Temodar but I note that a quick search of the Internet shows CCNU is often combined with Temodar so I wonder if your doctor is prescribing just CCNU or both.  Have you considered vaccine therapy or talked to your NO about it? Don't panic.  I know it's hard, but one day at a time.  Let us know how we can help.   jon4156 Sun, 12 Feb 2012 00:00:00 GMT Hi Ellen, This roller coaster just never stops!  It can drive you crazy! I am so glad you were able to go on a fabulous trip with you family.  I am happy for you. I don't have any words of wisdom on what to do next.  I will say that I am glad that your NO thinks out of the box.  I too always heard that radiation was a one time deal.  I am glad that your NO wants to keep trying and looking at all the options.  That is fabulous.  NO ONE IS GIVING UP, ESPECIALLY NOT YOU!  It sounds like your family is holding on tight to a long term solution to your problems.  Maybe it is their way of coping and they don't think in the same terms as you and just see you going on forever.  I do think it is a good plan to have things in place for your little ones.  That is only thinking realistically, anything can happen at any time.  You could have a car accident and be injured.  You never know what tomorrow will bring.  It may bring rain or sunshine.  Sounds like you are a caring mom, (learned from your mom), means trying to be prepared for all things. I do beleive that God has a hand in all things we do.  When I look back at my husband's illness and where our family was 5 years ago when his CNS Lymphoma of the brain started and where we are now.  We are in such a different place.  Our children are older and settled.  John and I are settled, God is good and will get you through all the good and all the bad times!  He has given us 5 years!  Where we go next is still in God's hands. Take care Ellen and stay strong!  Stay postive, even though it gets hard soemtimes - that has a lot to do with fighting the battle.  I will be praying for you! Love, Sheila Sheila5 Sun, 12 Feb 2012 00:00:00 GMT is next. But after searching this board I'm scared really scared. MY NO says if this doesn't work then then we can do radiation again. WTH? I thought you could only do it once. My NO said that it has a 30% change of working but a little higher since I have the missing DNA, I don't think my family understands that I could be dead in a year. I'm trying to stay positive but I want things in line I have a 3 and 6 yr old and a 62 yr old husband. Just got back form Disney through Inheritance of Hope-It was a wonderful experiance and I encourage any family with a family member that's fighting a terminal disease to go to their site and apply. My Mom is so sweet she keeps reading books and now its cottage cheese with flaxseed oil. Praying for you all! Ellen EllenFisch Sun, 12 Feb 2012 00:00:00 GMT