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Old 05-03-2013, 08:12 AM   #61
Andrea Barnett Budin
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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
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-03-2013, 02:25 PM   #62
NEDenise
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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
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 05-03-2013, 03:00 PM   #63
NanaJoni
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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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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 05-03-2013, 03:48 PM   #64
BonnieR
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Re: NEDenise vs NEDecadron Smackdown!

Across this great nation, drums are rolling!!!
Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 05-03-2013, 05:31 PM   #65
ammebarb
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Re: NEDenise vs NEDecadron Smackdown!

Horray for avastin! May it do the trick!

Barb A.
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Old 05-03-2013, 05:33 PM   #66
Andrea Barnett Budin
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Re: NEDenise vs NEDecadron Smackdown!




AND THE CROWD ROARED... YOU GO DENISE!

When you say, SMACKDOWN, you ain't kiddin!

Yeah rock star onc!!!!! Gratitude balloons...


Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-03-2013, 09:24 PM   #67
Catherine
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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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Catherine


Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
13 years and no recurrence as of April 2019
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Old 05-04-2013, 02:53 AM   #68
LeahM
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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
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39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 05-05-2013, 04:35 PM   #69
Andrea Barnett Budin
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Re: NEDenise vs NEDecadron Smackdown!

Puleeze check out GARLIC, WINE AND CHOCOLATE thread.

About inflammation. About ENERGY MEDICINE. Cell death (apoptosis). And supplements.

ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-05-2013, 08:39 PM   #70
KsGal
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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.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 05-05-2013, 09:10 PM   #71
Andrea Barnett Budin
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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...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-06-2013, 10:51 AM   #72
dearjilly
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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
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[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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Old 05-06-2013, 07:33 PM   #73
KG1993
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Re: NEDenise vs NEDecadron Smackdown!

Congrats Denise! I hope it works!!!
kG
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Old 05-07-2013, 12:27 PM   #74
NEDenise
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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
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 05-07-2013, 01:18 PM   #75
Midwest Alice
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Re: NEDenise vs NEDecadron Smackdown!

Good news! So glad it went well. Thinking of you
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 05-07-2013, 07:04 PM   #76
mamacze
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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)
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only, waiting for re-enroll in U of W vaccine clinical trial for "booster".
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Old 05-08-2013, 08:39 PM   #77
KsGal
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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!
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 05-12-2013, 11:01 AM   #78
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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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.

Click 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.

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
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 05-12-2013, 11:50 AM   #79
Mtngrl
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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.
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 05-14-2013, 06:30 AM   #80
Pray
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Re: NEDenise vs NEDecadron Smackdown!

Hi Denise ! Just checking in on you Lil Sis! Gods blessings to you
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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