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Dearest Denise,
Hang in there and be patient while God works out a solution. I know it is hard to wait and be positive but you've been so positive all along and such a "rock" to all those around you, now try to let it sink in that help is on its way. Prayers are coming your way and remember God works in mysterious ways. If being on steroids is a temporary solution to get you to the next big drug or opportunity.... then be patient and put up with it. If getting off steroids is in "His" plan, it will happen without a fight, so embrace his plan and just let go of fear and glide.
It doesn't hurt to have a good dose of anit-depressants, anti-anxiety and sleeping pills to help you along too. Don't forget to enjoy a good glass of wine every once in awhile too. Life is good.
Kristin

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Dearest Denise...so great to hear this news, you just can't go "MIA" (Missing In Action) too long...you will be caught as you are so loved!!!

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Great news, Denise - now you just need to face down that insurance company.
Best wishes.... pam

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I am sure you are greatly relieved.
Now, get ready to deal with insurance but your docs should be doing quite a bit for you on that.

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Hey babe, sorry to be so absent...glad you're okay but let me cut to the chase: Genentech has a patient assistance program for Avastin, especially for patients who've been on it in the past. Your onc's office should be able to get you started on Avastin using the patient assistance program while fighting with the insurance IDIOTS. You can even call Genentech yourself to get their balls rolling!
Xoxo xoxo

SMACKDOWN Victory!
 

Losing one's hard work, to have it dissolve in front of you and seep into there stratosphere where only the FBI can relocate it -- is so emotionally depleting! Outrage and exasperation take over my personality... I understand your frustration, on so many levels...

I am glad you are sticking to your guns re treatment options. So proud. The tumor board apparently moves like it's stuck in molasses, but they seem to be coming around to the patient's point of view. You are the ultimate Decider. It's your life, your body, your brain they are all talking about.

I must google nim-null. I love the term, even if you just made it up. In fact, especially if you invented it/coined it. Kind of a numbskull. Dimwit.

I believe in your belief -- that there is no disease there! You're just trying to get rid of radiation necrosis. Your analogy is spot on.

Guess they had to go through all the other possibilities before they became ready to see that Avastin is doing it's job -- and now they must convince the insurance company of its need. And, yes, it is less expensive than surgery, recovery, etc.

If 1 mg of D/day is keeping you balanced, which is key, stick with it till the Avastin finishes its work. You have the rest of your longggggg life to loss the xtra lbs and find some dimples...

We were all just gathering around to get updated. WE are sorry to harass you. But we do love you, Cancer Assasin/chemo Ninja! Oh, and Soul Sister. (And Kate
s t i l l hasn't had that baby...)

The insurance company will come around! I/we have had to fight for lots over the course of the yrs, and in the end, we get what we should have been given to begin with. Tenacity is key. They count on you giving up and going away. So not happening here!

I do remember Flori, Flori, Morning Glory having an altercation with getting Avastin. And she won. Don't you love calling Genentech and "getting their balls rolling"?!!

Always love you, Flori. Always thinking of you. Always impressed with your wisdom, your wit and your tenacity! How you doing out there in La La Land? Your advice is precious. As are you, my old friend.

Denise -- get their balls rolling...

Love to you, and all, as always,

Andi

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Denise -- I loved Mork & Mindy. Robin Williams was/is so very funny. Of course, I believe there is life on other planets. How could there not be? Did you notice the pea size of Earth? Teeny, tiny planet, so many galaxies. My favorite Martian was also a fav. I'd forgotten nim-null. So apt.

Third Rock (from the sun) w/John Lithgow and Jane Curtain cracked me up too.

SHAZBAT, FREM AND KREL were so Mork too. Remember them? When I get pissed off next time, instead of saying SUGAR, as my southern Mother did (along with shoot) -- I will try to use Mork's vocab.

So glad you felt the love. You were in our heads, as you often are...

Love Y'ALL... :-)),
ANDI

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I liked your post! Sounds like Avastin, behind door number 3, was the best option. That's great!
Much love, Jill

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whoops, just saw your post now.....
They just say....sorry, there is nothing we can do, but you can always have hope. I guess perhaps the tumour has cut off the blood supply/nerve. What I have realize about the brain though.....nobody knows. I will still have hope, but yes I am MAJOR frustrated by it. Can't drive, can't focus, yada yada yada....
I have been depressed (poo, I know) so I'm thinking of taking some anti depressants. I guess, since my vision has gotten worse, so have my thoughts. If I get headaches, I worry...if I get dizze, I worry.....you know the routine. I just don't know how to get out of this funk.
I wish I could just be the old Jill again, I don't think that's too much to ask!?!?! Oh, but without the amount of booze that I used to drink!! ;)
Missed you! Jill xo

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Denise, just to let you know you are not the only unlucky one. Having beat down cancer (so far) I have since been diagnosed with a mast cell disorder and now, advanced end stage glaucoma. I really think about you often and your wonderful sense of humor. I hate that you have had this terrible disease but you have been a blessing to this community.

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Denise - I am a pray-er and I will be praying for you. You sound like somebody that is just not afraid - that you look it straight in the eye and just keep on going - doesn't look like denial to me.
Stay strong - you have a whole bunch of tough women with you.

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Im glad to hear the upbeat reports, and Im glad that they are going to let you continue on the Avastin for a while because..like you said...its working! As always, prayers and positive energy headed your way. Big hugs..and a high five!

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Denise! I have been following these posts to you and am in awe of your massive Ninja spirit! All prayers and love ,
Nora

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Just wanted to say a word to Jill. Don't just think about antidepressants, take some!! Or at least some Ativan for high stress moments. Have a talk with your doctor. I went through the early stages of treatment "cold turkey" and wish I had been taking the edge off sooner
You have a lot to cope with and should use anything available to ease the way
Keep the faith

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Bonnie, You are always so wise. I was thinking exactly the same thing re Jilly's comment!

We need all the help we can get. If those drugs aren't made for people like us, who are they made for?

Also, Jilly, I have an older friend who was having loss of vision. She went to another doc, as the first said, Let's wait and see. They gave her Avastin injections in her eyes, over a period of months, and her vision improved. She is not a bc-er.

Trying to help.

Love to y'all,
ANDI

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Oh thanks Andi! That would work for me with avastin injections in the brain! :) The tumour is right on the optic nerve. The messages are not being sent. My eye is good, just not where the tumour is. I did ask about avastin, but I guess I'll have to ask about it again. It's pricey, and I'd be buying it out of pocket. Now if I can find those pockets! :)
Much love to you Andi. Thank you so much for that. You are very caring.
Denise...I'm coming to you now....xo

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Dear jilly,
Talk to the Roche Herceptin patient support people. They might let you get the drug for free for this application.
Paul