A vastin stopped working:( CCNU

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

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

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.

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

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

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

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!

 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

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.