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Praying and praying that everything goes well today with the docs and the scan results. As far as poor little Mickey getting squeezed up in there...Off with his head!!! Lighting a candle and waiting to hear the good news when you get back.
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Prayers sent from down south -- heavenward!
Waiting with all for words from you Denise. Poor Mickey, but I agree, off with his head. Less dense. Hmmm... With glasses, I saw denise... Are you in your head? No. You are One with your Spirit. Listening to your Inner Voice. Just realized. Mice can squoosh down to flat to fit into the tiniest spaces. Mickey will be fine. AND SO WILL DENISE!!! LOVE YOU, ANDI |
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Denise,
I haven't been on in a while, as it's really hard to read anything....so that equals frustrating. Anyway, I wanted to let you know that I've been reading up on what's happening in your world, and like my world....similar. I've been on the MRI "watch". I am just writing you to say hi and I am thinking of you, and I hope that you aren't too drained with this coaster. I am drained. SO.....hi and much love and strength to you. xoxo Jill |
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Missed you jilly. Glad to hear from you.
Denise -- waiting patiently-ish to hear from you. No pressure. When you can. Love, andi |
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Hi Denny
I'm with andi, waiting patiently-ish! Hope the news is good. Hugs to you my friend Dawn. Xx |
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((hugs)) Thinking of you...lit a candle for you this morning.
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Thinking of you and praying for you always!
Barb |
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Andi, I think of you often. Especially when I take half of a zinc tablet! lol
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Hi Jilly. 30 mg of zinc is good. I don't go over. Don't need belly trouble, over and above my IBS. Oh dear. HOW ARE "YOU" FEELING, Jill????
Hellllloooooo Denise, Denny, Nisey ------- tap, tap, tap... Anxiously awaiting word... Did I miss something? LOVE, LOVE, LOVE, ANDI |
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Empress! Your Majesty! Your Royal Highness!
Getting worried over here in the central part of the state, Kiddo! Last I saw you were headed off to visit your medical gurus to see what they were concocting and then no update from Denise. The entire world is on the Great Kate Wait Watch, but we here on Her2Support are on the Queen of Denial Land Checking in With Us Watch, which is infinitely more important! Really hoping you are just busy lounging by the pool in this heat. |
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Laurel! You are sooo right on. Your analysis of the rest of the world and us is spot on...
Our Empress, Queen of Denial Land Waiting Watch is so much harder on us, than the reporters outside that hospital. We are all on the NEED TO KNOW list! Didn't consider you lounging at the pool... Hmmm... I will hold that thought... Where is our Sprakle Lady of Laughter??? With Mickey Mouse hat in her head... |
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Still praying, Denise. Looking for good news.
- Penny |
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OH, my FRIENDS!!
What would I do without you?! Let's not ever find out! Thank you so much for caring about me, and sending love and prayers! The short version is... I'm fine! Yay! It was a very long and trying week! When I got home from my appointment with the neurologist on Tuesday, I typed out all the options offered to me ... and then the post vanished! I was sooo pissed, and tired... I just couldn't type it all out again. Besides, two of the three options that were offered were not things I was going to submit to anyway so... it was just a matter of letting the much heralded, but often wrong, brain tumor board come around to my way of thinking. (They didn't meet till Thursday afternoon) Option 1 - which I have already declined several times - craniotomy. But, either the tumor board has finally realized the fool-hardiness of that option in my case. Or the nim-null who keeps suggesting craniotomy was absent.... because no one brought that up this time. Option 2 - the neurosurgeon told me there had been some clinical evidence that Avastin and WBR had a synergistic effect on HER2 brain mets. But, as I pointed out to him... I don't believe there is any disease lurking in my brain. We're just trying to get rid of radiation necrosis. In which case I asked, "Isn't treating radiation necrosis with MORE radiation sort of like saying - gee I'm so hot with this sweatshirt on... maybe I should put my coat on too! Fortunately, when the beloved tumor board met, both the neuro-oncologist and the radiation oncologist in attendance nixed that option. (Not with the sweatshirt analogy exactly... but something along those lines.) Option 3 - continue Avastin - because IT WAS WORKING!! I'm sure you guessed... I prefer option #3. Now it's just a matter of convincing the insurance company that Avastin, though very expensive, is nowhere near as expensive as surgery, recovery, etc... So... I've been able to function on 1 mg of Decadron/day. I am no longer deflating however. But... I'm hoping to have 20 or 30 years to lose those extra pounds... so I have time. :) Thanks again for checking in on me. I only found out the tumor board results myself, yesterday... but I'm sorry I caused any worry in the HER2 world. Loads of love to all of you! Denise Queen of Denial Chemo Ninja |
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All is forgiven with that seemingly upbeat report. I guess it is now letter writing and begging your insurance company to grace you with the med. that will resolve the problem. Keep us posted!
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Oh, I'm so glad you are aiming for the option that was working. Now, hope the insurance company gets on board sooner rather than later. You are always in my prayers!
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Oh Denise, what a relief! We were all getting nervous out here.......
The Avastin sounds like such a lovely option, compared to the rest! Dawn xx (you had me worried there!) |
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Denise never been happier to see your bright smiling face and colourful prose! I hope the insurance company take the sensible option and keep you happy!
Love xx |
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Denise if I remember right you are a teacher, right? I know here Indiana the teachers are always talking about how bad the insurance is and if it is like yours I can see why. That's terrible you are fighting to get healthy and you have to fight insurance to do it. That's plain wrong! Also, I have done just what you did typed a bunch and It vanished and then said I was logged off....oh I was ticked. I feel ya on that one.������
I will have to google Avastin because I don't know what it is, but I sure hope you get it! |
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Yay indeed! Glad to hear your news, and that you have such fighting spirit to tell that board what's best for you! Now, how about you give us the name of your insurance company and we'll start some sort of action on your behalf. They will see that you are so worth the cost of Avastin and so much more!!
Big cheers and hugs, Marie |
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Oh, Denise, what a relief! To hear from you, to see your options set out. I love "I am fine!"
Let's hope the insurance company comes through upon mere request... Love Karen |
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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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My Dear, Dear Friends and HER2 Sisters!
I am touched, flattered, and overwhelmed by your love and support. I am so sorry I caused you to worry... and I did/do not for one second feel harassed by your attention. In fact, if I had realized you were worried, I'd have posted sooner. I promise not to go "MIA" again soon. Patiently-ish is now one of my new favorite words! I can't believe that HER2 royalty is more closely followed around here than real royalty. We really are an elite group! Jenny - "colorful" prose - hahahaha! I get it! Jilly - I missed you too! I was waiting patiently-ish to see how you were doing too! Is there a plan in place to "fix" the vision issue? That must be maddening! Jody - Thank you for the candle! So sweet, and greatly appreciated! Kristin - You are so right! God does have a plan... and I am so grateful that it includes both Zoloft and Ativan! I also hope it includes playing with my grandchildren someday!! I have to come clean though... I don't like wine much, and it doesn't mix well with steroids... but chocolate takes me to my happy place! :) Flori - Thanks for the heads-up on the Genentech Patient Assistance thing!! You know I'll be all over that! It's so nice to have the "voice of experience" whispering in my ear. Marie - If I don't get my Avastin... boy will that insurance company be shell shocked when my sisters from all over the world bombard them with letters! I hope it doesn't come to that... I know if it did, I know you could pull it off... and I'm grateful just for the offer! Andi- I do have dimples lurking in there somewhere! And thanks, as always, for all your confidence in my decisions and support for what I believe to be true. It means a great deal to me. Now... as for "Nim-Null", I did not make it up. It's from the 70s show "Mork and Mindy". Mork (Robin Williams) was from another planet (Ork) and that was his word for doofus, nitwit...etc... So, again, my dear friends... I'm so sorry I caused you to worry... and... thanks for loving me enough to worry! Denise |
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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 |
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