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Re: NEDenise vs NEDecadron Smackdown!
Denise,
You have such a way with words. Goo indeed. I have a friend whose brain mets responded well to Avastin. And my onc says she's never had a situation where she wanted a particular treatment for a patient and could not get it. Often the drug manufacturer will make it available even if insurance will not pay. I'm envisioning myself walking along with you, holding your hand. I'm sorry for your tough week. Love, |
Re: NEDenise vs NEDecadron Smackdown!
Good morning, Denise. Yes, your news is "mixed", but you are in the process of getting the Avastin rolling, and if it works as it should, you may have a clearer pic of residual disease.....and maybe the avastin will take care of that too! Having it "sit there" for nine months is a good thing, I'm thinking! You are in my prayers daily. Thank God for your not freaking out, for whatever reason. I need to remind myself regularly not to lose today to fear, depression, anxiety. Love ya!
Barb A. |
Re: NEDenise vs NEDecadron Smackdown!
Denise -
Cascade is going to slow to a trickle real soon! In my case the docs also wanted to jump into surgery to get out what ever was lighting up. No particular danger in that, so I went ahead, even with no symptoms. If I had it to do over I would wait. You have stumbled on my philosophy and modus operandi: Or maybe...and I think this might be the right one...I just know in my heart, and in my gut, that this too shall pass. It's not my time yet...and I still have a lot of work to do before I move on. "Not my time" has been my mantra since 2001. The Good Lord will give me a hint when he wants me, but I did not feel what was happening could not be overcome in this life. Inner work is very important in this disease process. Check deep into your gut and heart and there can be many revelations. |
Re: NEDenise vs NEDecadron Smackdown!
Steph said it: "inner work"!! You've got it going on. Keep the faith!
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Re: NEDenise vs NEDecadron Smackdown!
You've got it NeDenise! Keep listening to your Inner Voice. That's your Spirit talking to you. It is full of eons of wisdom and it wants what you want. It loves you more than you love yourself. So trust it. Stay in touch with it. Connect with it. Align yourself with that Knowing. It is the True You.
Just as you said, or suspected. Just as the ever amazing Steph says. With Love and Light, Healing energy shooting right at you from all directions... Close your eyes and feel the healing white Light beaming down on you from the top of your head, and smile. We were given the power of choice as our birthright. Consciously choose to decline what you "feel" is not in your best interests. Decidedly choose to live in joy, filled to overflowing with Universal Love. You're so much more beautiful than you think you are, Denise. You're a gift to all of us! ANDI |
Re: NEDenise vs NEDecadron Smackdown!
Denise thinking so much about you. I found this quote on a card that I thought was nice:
Relax. Breath in deep. Hold it. Let it out. Loosen your shoulders. Smile. Close your eyes. You'll be surprised at how many voices you'll hear, whispering sweet encouragement into your ear. xo |
Re: NEDenise vs NEDecadron Smackdown!
Oh man. We are going through pretty much the same thing eh? WOW!
Well, you still managed to make me laugh with the gooey talk. You funny Denise! I'm back up to 4mg dex. Plus I'm now taking this Boswellia Serrata herb thing. I'll take whatever I can get. So now I guess we wait. Argh. Waiting sucks. However, this could still be necrosis. We have to think it. Yes, necrosis. I was doing the necrosis dance the other day. Like a rain dance. Lets dance! Jill xo |
Re: NEDenise vs NEDecadron Smackdown!
HOW BOUT DANCE WALKING?????
Dance Walking Fitness Ben Aaron. Time to Dance Walk Baby - YouTube I do this at home all the time. Didn't imagine it was a thing! Never thought of taking it to the streets. Mingling. Still not sure I can handle that... Maybe Baby works for me. How about you???? Andi |
Re: NEDenise vs NEDecadron Smackdown!
Im sorry that you didn't get the news you were hoping for, but really happy to hear that there is no progression. Also happy to see how positive and upbeat you are, and that your sense of humor is intact. If you just KNOW that you are going to get better, you are. Listen to that gut feeling that this isn't any big deal, and this too shall pass. Im sending you lots of white light and positive energy.
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Re: NEDenise vs NEDecadron Smackdown!
Well Ks (is that Kansas?) said 2 of THE most important things in her last post, and actually pretty often.
If you KNOW a thing (deep down at your core) -- it will be. IOW, if you KNOW you're going to fail -- you are sealing for destiny. Whereas, if you KNOW you can and will prevail -- you are calling your desired goal to you!!!! And -- your gut (as we all commonly see it) is your Inner Voice. It's your SOUL! It guards and protects you. It nurtures and sustains you. LISTEN TO YOUR INNER VOICE. It is an eternal sacred entity that is always with you! You are never alone. Never. (I talk to mine all the time!! Yes, I talk to my body, and I talk to my Spirit -- at the very Essence of my beingness.) Sending Love, Light, Positive Energy. Live in the Land of Yes! Andi |
Re: NEDenise vs NEDecadron Smackdown!
Andi, I love you! :)
Thanks for that. |
Re: NEDenise vs NEDecadron Smackdown!
Denise - you know this "goo" is gonna be alright! Time and space and an inner knowing - you know you will be fine.
Keep being you (puffy face and all!) A xx |
Re: NEDenise vs NEDecadron Smackdown!
Morning Denise.
Thinking about you. xo Jill |
Re: NEDenise vs NEDecadron Smackdown!
Jilly mentioned this and I googled... anti-inflammatory effects to this herb?/?supplement...
Boswellia Serrata - In-Depth Scientific Supplement Information | Examine.com study in effect size. Remarkably, Boswellia appears to be quite anti-cancer that appears to be more anti-proliferative rather than apoptotic (the latter meaning to induce regulated cell death) since it is a potent inhibitor of angiogenesis and cell invasiveness. The suggestion that Boswellia can potently suppress tumor growth (Pancreatic, Colorectal) and in some cases actually outright prevent tumor growth (Prostatic, Glioma) is there. Boswellia appears to be a very promising anti-cancer herb due to the potency it exhibits in animals, with one study noting this after oral administration (100mg/kg of the main boswellic acid in animals). The potency has been replicated in other cancer cell lines in vitro (including breast, cervical, myeloma and leukemia) but these cancers do not yet have animal interventions yet. Boswellia appears to be fairly nontoxic, has a history of usage as a phytopharmaceutical for brain edema associated with radiotherapy (a cancer treatment), and the general anti-inflammatory and anti-cancer effects make it a fairly interesting herb relative to others that have subpar evidence. How'd you come upon this Jilly? Smart lady. Sounds more than promising. Andi |
Re: NEDenise vs NEDecadron Smackdown!
Hi Friends!
Sorry I haven't checked in here for a bit... Botswellia Herb thing...check! I'm on it...well not on it, on it, like Jill... more on it, like I'm off to find some!! Like... on a mission. Thanks Jill and Andi! My docs are on a mission to get Avastin approved. We all know the dance they have to do. They request. Insurance denies. Docs appeal. Insurance bargains. Docs "threaten". Finally, hopefully, everyone agrees to do the right thing for the patient. My doc expects the process to take about 2 weeks this time...so that means Avastin won't start till late next week...at the earliest. In the meantime, I've weaned to 8mg of dex...for no other reason than I'm hoping my face will shrink a little. Vanity! Thy name is Denise! So far...nuthin! All I'm getting for my trouble is sleepiness...I fall asleep, and don't even realize it till I wake up... but only when I'm sitting down, so no falls so far :)... but I probably sleep 12-14 hours a day right now, and I'm a little off balance when I walk around...mostly when I turn corners. I guess, sort of hand-in-hand with the sleepiness...I'm also feeling weak, and physically tired most of the time. Hoping the decreased steroid load will let my energy and muscles rebound. I wake up with big plans for the day! Then, I get up and use all my energy to get dressed, and get the family off to work and school. Who'd think making a coupla sammies would leave me huffing and puffing? So, I sit down for a rest, and some coffee...and usually wake up an hour or two later. I guess it's not so bad, really...but I won't miss it. I much prefer my former "fly through things with my hair on fire" pace of living...and I can't wait to get some of that energy back. Till then, I'm hangin tough...trying to keep my chin up...actually it's chins up right now! Looking for the silver linings in all this junk...and relying on my HER2 sisters to help keep hope floating! Love to all of you! Denise |
Re: NEDenise vs NEDecadron Smackdown!
I think Rich posted quite a bit about Boswellia. Glad to hear you are hanging tough, Denise!
I was in Lowes the other day and came upon a product called Googone! Felt like packaging up a can and sending it to you, but then thought it might not be appreciated even with your amazing sense of humor. Sure wish there was a GOOgone for you. Maybe Avastin is just the thing. Hoping so! |
Re: NEDenise vs NEDecadron Smackdown!
HA ha ha!
Like Chrisy's willingness to try 'ammonium'...if I thought googone would do the trick... I'd be on it like white on rice!! Thanks for the giggle! Denise |
Re: NEDenise vs NEDecadron Smackdown!
Hi Denise, I'm just catching up on your news - oh my GOOdness! You keep the channel open listening to your inner voice, and all the voices here who believe in you and what you can do.
I hope the doctors are "dancing like no one is watching" in getting Avastin for you. Thinking of you and keeping you always in my prayers. Love Marie x |
Re: NEDenise vs NEDecadron Smackdown!
Thank you Thank you Thank you Thank you Thank you Thank you Thank you Thank you ! Please post no matter how happy, scared or sad u worry we might be. We love you so very much. You are so deeply associated with helping me as we started on our "cancer journeys" so close together in chronology. You are my shining star!!!!!!!!!!!!!!!!
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Re: NEDenise vs NEDecadron Smackdown!
just read your update. prayers coming up from inside and out over the way to Pennsylvania. I am hoping when I get the brain lesions (not if, but when) I will have the same braveness and "F/U" attitude. You go, girl!!
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Re: NEDenise vs NEDecadron Smackdown!
I'LL NEVER LOOK AT MY BOTTLE OF GOOGONE THE SAME WAY AGAIN. (It is fab for removing pesky stickers from freshly bought items that refuse to budge. But it does have this awful smell gotta say.)
GOOGONE can be a mantra though, Denise. GO GOOGONE GO AWAY N O W ... EDEMA BE GOOGONE. THIS IS A SISTER SHERO SMACKDOWN... SWELLING YOU'RE NOT SO SWELL. BEGONE...! Chipmunks may be cute but I don't want to be one. Would B-12 -- 3,000 sublingual help the deep valley fatigue for you? I can't live without it. (Didn't have anyone to tell me about it back in the late '90s when I felt just like you. Sleeping 12+ hrs. Get-up-and-go got up and went...) Thinking out loud. Andi |
Re: NEDenise vs NEDecadron Smackdown!
Nora!
So good to see that smiling face!! Andi!?!! Were you a cheerleader in your youth? If not...what a wasted talent! You make me smile!! Sooo... Drumroll please... No, really... Seriously...somebody has to pretend to do a drumroll, or I'm not delivering my news... Just got the call! Avastin is approved!! I start on Monday!!! :) :) :) :) Woo Hoo! My Med onc was like a terrier on a bone...she just hounded those insurance types till they couldn't take it anymore! I am so lucky to have her!! And...yes...I told her so...repeatedly!! One more hurdle cleared...now let's just hope Avastin is the new "Goo-gone" especially made for me!! I'm soooooooo ready to feel a little more normal again. Not to mention...if Avastin does it's job...I might see the real me in the mirror one of these days!! And that would not suck! Have a great weekend friends!! Don't forget those prayers, good juju, and healing energy! I'll keep you posted! Denise |
Re: NEDenise vs NEDecadron Smackdown!
Denise - WONDERFUL news!!. My drum is still rolling. You've been through so much and still bring such joy to the rest of us. I know the steroids are making you feel a little like the Pillsbury doughboy (or Michelin man) - that's how my sister described her "look" when she had a similar reaction while on steroids for a lung condition. She was miserable (as I'm sure you understand) for several months but now laughs about how long it took for her to "deflate" She's back to normal now (whatever the heck that is) but still has fears about ever having to do the steroids again. Just so happy about the Avastin - your onc rocks.
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Re: NEDenise vs NEDecadron Smackdown!
Across this great nation, drums are rolling!!!
Keep the faith |
Re: NEDenise vs NEDecadron Smackdown!
Horray for avastin! May it do the trick!
Barb A. |
Re: NEDenise vs NEDecadron Smackdown!
http://cdn-cf.aol.com/se/clip_art/gs...celeb-confetti http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/fists http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/hug
AND THE CROWD ROARED... YOU GO DENISE! When you say, SMACKDOWN, you ain't kiddin! Yeah rock star onc!!!!! Gratitude balloons... Andi http://cdn-cf.aol.com/se/smi/2b00001c91/06 |
Re: NEDenise vs NEDecadron Smackdown!
Denise, this is no laughing matter, but you have me giggling. Hair on fire, making sammies, huffing and puffing. Isn't that what the big bad wolf said to the little pigs? I'll huff and I'll puff til I blow the insurance company's door down. Sounds like your doctors are fighting for you. Sending my love and support your way as you keep fighting like the champ you are. Hoping this all gets better soon and you can light your hair on fire to celebrate!
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Re: NEDenise vs NEDecadron Smackdown!
Denise I love you! So glad you are able to put on your new boxing gloves on Monday
Cyber Hugs Leah |
Re: NEDenise vs NEDecadron Smackdown!
Puleeze check out GARLIC, WINE AND CHOCOLATE thread.
About inflammation. About ENERGY MEDICINE. Cell death (apoptosis). And supplements. ANDI |
Re: NEDenise vs NEDecadron Smackdown!
Woo hoo! Thats the best news. Now you can commence to kicking butt. Im glad you have an oncologist who is so proactive and a real go getter. We are officially on the road to get back normal looking Denise! Big hugs to you...Proud of you and your positive attitude.
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Re: NEDenise vs NEDecadron Smackdown!
please see ways to naturally fight inflammation above and in supplements.
As I said, love your bulldog onc. Kudoss... To her and to you, Denise. You're on a winning streak... |
Re: NEDenise vs NEDecadron Smackdown!
Andi, I'm glad you looked in to it. I'm happy that I'm taking it, I just hope it's helping!? Not sure as of yet. I'm still on dex, so we'll see when I go off.
Denise, soooo happy to hear that you got the avastin. Let us know how it goes. Think of you all the time, Jill |
Re: NEDenise vs NEDecadron Smackdown!
Congrats Denise! I hope it works!!!
kG |
Re: NEDenise vs NEDecadron Smackdown!
Hey Friends!
Thanks to all you drum-rollers! You're good sports to humor me and my goo-ey brain!! Did the Avastin thing yesterday! No side effects...fingers crossed...so far so good! Still tired, blown up like a tick on a hound-dog's neck, but feeling hopeful and like there's a light at the end of this loooooong tunnel again. ( I know...I know...don't go toward the light!!!) But, in the spirit of full disclosure...I was starting to feel a little discouraged by my lack of 'progress'. According to my wonderful med onc.. Dr. Amy Clarke... she deserves a shout out!!... if we're going to see results, we should start to see them in the next 4 weeks. By then, I will have had 2 Avastin infusions. And, if I'm feeling "better" then, and only then, can we start to get me off thes d*%# steroids...once and for all...I hope!! Then, the plan is scans, 2 more Avastin infusions... and this is where my plan, and the FAAAAAAR less important plan of the tumor board digress... I'm planning to... feel like my old self... start shrinking my face and body to a more manageable size... go on my merry way... perhaps not NED... but stable... back to just Herceptin and Tykerb... not dead...planning to live quite a while in fact! (My 2 favorite docs agree with me...perhaps that's why they're the favorites! Certainly why they're the smartest...IMHO!) I suspect that the dreaded tumor board still expects... Avastin is a waste of precious time... there is cancer still growing in my brain... a craniotomy in needed post haste! (So sad that they are confused and mistaken! Will they have the sense to be embarrassed by how wrong they were?) So...in layman's terms...if this is going to 'shrink the dead brain goop'... so the tumor board doesn't start clamoring to 'scoop the goop'... it better start workin' quick! Not that I plan to do anything I think is a bad idea mind you... Now... as to chocolate as a medical treatment...I believe my views on that are quite clear. And, I can tell you, without a word of exaggeration that every single meal we eat at Denise's Divine Diner begins with onions and garlic. I can't think of a single meal that doesn't include those two essential ingredients! But, like green tea...I just don't like red wine. So I just double up on the other three!! And Andi...did you really think I would see a thread with that title...and your name attached to it...and not jump on it immediately!?! I'll keep you posted! Keep praying...she asked boldly...and shamelessly! Love to all! Denise |
Re: NEDenise vs NEDecadron Smackdown!
Good news! So glad it went well. Thinking of you
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Re: NEDenise vs NEDecadron Smackdown!
Hey Denise!
So happy to hear this Avastin update! There is nothin' like a bucket full of HOPE. Avastin (with NO side effects!) sounds great! Sending truck loads of love to your Onc; Dr AMY CLARK which is (coincidentally) the same name as a good friend of mine who is also just terrific. LOVE chocolate (it IS a tad bit better than garlic); it really works miracles.... Praying that you can kick the can of steroids down the road chop chop...that you will be sleeping like a baby through the night soon... that Avastin will zap your brain mets.....and above all else, I am praying that you will feel healthy again. How good that first day of feelin' like your old self will be... Love and Hugs and shouting from the rafters, Kim (from CT) |
Re: NEDenise vs NEDecadron Smackdown!
Im so happy you are not having any side effects. I swear, you just seem to power through about anything. Dr. Amy Clark, thank you, thank you, for being such a wonderful oncologist!!! Four weeks will pass before we know it, and you will be picking up the good news. Just keep picturing yourself in your mind looking like yourself, feeling like yourself, and doing all the things you love to do. That nasty dex, I swear, it is just almost unbearable. Big hugs and lotsa prayers to you!
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Re: NEDenise vs NEDecadron Smackdown!
Denise, Been thinking about you. So appreciated your update. Thank you. Wanted to say -- you are doing everything -- and I mean everything -- right. http://cdn-cf.aol.com/se/snd/soundClick to play sound: Drumroll and Hit Glad you're on Avastin and KNOW you will get results. I say that cause "you" KNOW you're going to be fine. You're talking to good, smart oncs (forget the doubters/hardline purists), you're talking to your body, and to your goop -- rejecting it with all you've got. http://cdn-cf.aol.com/se/clip_art/pe...er11-biff-clip I definitely have been shouting out to Dr. Amy, since I heard what a cheerleader she is for you. I discussed her with the Universe and asked for more like her!! You've stated your INTENTION clearly. You plan on living a long while. You plan on feeling like your old Self, though the Self we all get to talk to is pretty darn fantastic and awesome, puffy though she may be. We still love 'ya. Tis sad the dumber docs live in a grey world. Onions and garlic are sooo good. And chocolate (dark) too. I will continue to post and pray. Love your boldness and shameless greed for Life! I applaud it in fact. Have you ever tried Petite Sirah red wine? Spellbound from California. Or -- take some resveratrol. Good for you... Love your magnificent radiant Spirit, even in the face of feeling so cruddy awful. I recall such days way back and (minus your incredible humor, I did laugh a lot, and crack jokes), I did tell myself to LET IT PLAY OUT. I consciously chose to EMBRACE INNER NONRESISTANCE, aligning myself with the Present Moment (such as it was) KNOWING I was in the process of healing, and that I would get there. I decidedly allowed the suchness of the moment to simply be, not wasting time and energy (the latter being in pathetically low supply) to fret about what was. I kept moving forward. And you, Denise, clearly get all that! Keep smiling my friend. Big hugs, Andi |
Re: NEDenise vs NEDecadron Smackdown!
Denise,
I'm so happy you got approved for Avastin and have gotten one treatment with no side effects. Hang in there, my friend. We're all pulling for you. |
Re: NEDenise vs NEDecadron Smackdown!
Hi Denise ! Just checking in on you Lil Sis! Gods blessings to you
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