Marie, sorry to hear you lost your dancing shoes. I have no advice for you, but I can offer you a big cyber (((HUG)))! I hope you and Ed find the help you need. Will keep you in my prayers.

Marie-
I am here for you in LA w/extra bedrooms. My brain surgeon is out of Dr Black's office - I had the gamma at Cedars-Sinai. Cedars is 5 minutes away and UCLA about 15. USC is 20 and CITY OF HOPE 45.

Let me know how I can help. I am already praying.

Dear Marie,

Sending big hugs to you and Ed. It sounds like there are some great surgeons who will be able to treat the mets. I can't believe the b@#$$%$# had the nerve to come back either! Gamma is gonna get them!

Hugs and Prayers,
Lexi

Dear Marie & Ed,

Sending hugs, thoughts and extra prayers your way. You will get through this.

Sincerely,

Liz J.

Marie

My thoughts are with you and Ed. Stay strong. We are always here for you.

Marie & Ed I am so very sorry to hear this new's. Please know that many prayers are coming your way.

So. so sorry but there are things to do as so well
explained in the post by Brenda, Joe, etc.. Please
know we care and you and Ed are in our heart of
hearts and prayers are headed your way. Take
care and know we are here for you.
patb

Hi Marie and Ed,

I just popped in to see if anything is new and I came upon your post Marie. Ohhhhh, Marie and Ed.....what can I say that hasn't already been said. I'm sorry seems so trite and empty BUT I really am. However, reading the posts from those who know something about brain mets I feel encouraged for you both.

Sending prayers for peace and wisdom.

Love to you both,

Mary Jo

Marie, There are survivors here dealing with brain mets and they're very knowledgable about how to control them. You and Ed are in my prayers, and you will get to the right person who will treat Ed effectively. Joan

Marie , in Charlotte NC in carolina medical center they used the latest cutting edge technology NOVALIS ...if you need it dont worried about house,trnspostation , food ...and support ...you all have in my house ...

Believe,

I wish I were closer to you so I could hug your neck. No words that I could say would lessen the pressure. Thinking of you and Ed...

your sister,
Terri

With Tears Flowing I Write:
 

How blessed I am to have you in our lives. The support has kept me strong and steady. ......Opening your homes to me, how beautiful; not to mention the sweetest most unselfish form of love you all provided us with when we needed it most. This news was as hard to take as the initial diagnosis.

I do feel better about things today and much has to do with you. Imagine that this recent Brain MRI was not suppossed to be done until 6 months per the Radiologist Oncologist???

I made Ed have an "Imaginary Headache" (hehehe) at 3 months and we discovered this EARLY enough. Ed's Oncologist was pleased to order this knowing I was being my demanding self AND because he too was not comfortable waiting that long. I will start a special post letting you all know the "War Against Brain Mets"

Thanks to all for this unconditional love and support.

And here is to being a demanding patient/caregiver, I just saved my husband's life by following in the footsteps of the best!!

PS: His doctor's reply to my "Sorry for being a demanding caregiver" was: ....."But in a good way"...hehehe!

Love you two so much! You and Ed are always in my prayers.
Hugs

Marie,

The best part of the report was: no edema or mass effect. That's a good thing, as you've probably heard from the doc by now.

My current 6-(8?) brain mets include one on my posterior brain stem, too. Most others are in cerrebellum. They are from 5mm up. Including three that are over 1cm.

I concur with what Joe and Brenda have said.

Mainly, you want Ed to be treated by a person/facility with MUCH experience when it comes to choosing the type of focalized rads.

When I had my 2nd occurance, those numbered 14. One on brain stem then, too.

Two headframe type SRS procedures were done...... leaving 6 mets to deal with. Those 6 were treated with CyberKnife in two sessions two days apart. (no headframe)

My current, (3rd occurrance), of 6-8 have been treated with mixed results with Xeloda/Temodar. Tykerb was added last fall, but I had some small progression after that.

My onc created my dosing schedule for me, from information I brought him. We have tweaked both dosage and schedule over the past THREE YEARS. My last scans, end of last month were read: No change. That is what I like to hear ;)

After the first four months on my X/T combo, scans came back at 50% shrinkage, twice! That was the best, ofcourse. Smaller shrinkages have been the more common. And slight progressions. And 'stable', no change.

WBR would not be in anyones thoughts at this point. Too soon since Ed's. If EVER again.

So, if Ed is not symptomatic at this point? You DO have some time to look around and see what is available in your own area.

That's my story and I'm sticking to it... 6 yrs with brain mets, refusing WBR all the way.

I know you will do all you can for Ed, finding and getting the best tx under all known circumstances.

xoxopatty

Hello Dear Friend
 

Yep! Patty rescued me as well. Her info was very interesting to my doc... and her path helped us plan out my path. Helped us see that there were lots of creative, individualized options beyond the standard of treatment, WBR... She is one of my heros, too!

Please know that I care about you both, Marie and Ed....one step at a time dear friends. You have received good advice here. love, Ceesun

Marie

I am sorry to hear of this development for Ed - but I know you and he will fight the beast with all you have.

Sending prayers and hugs to you both.

all the best
caya

Marie, I'm sorry to hear the news about Ed. I've had trouble getting to the site lately. You and Ed have been through the wringer before. You are both very strong and tough and will get through this just like you've overcome many other obstacles. My prayers are with you, sweetheart.

Count me in on the prayers and best wishes. Ceesun