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04-21-2007, 10:47 AM
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#1
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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I Am A Srvivor!
"95 dx w/4th stage invasive/infiltrating lobular carcinoma w/2 out of 18 lymph nodes involved. '98 multiple mets in the liver. Her2+ -- 80%. Taxotere Sept '98 thru May '99. Herceptin Nov '98 to present. Wkly '98-'02. Triple dosage every 3 wks '02-present. NED. Just extremely fatigued most days, except when I receive Procrit (and now Aranesp) to boost my flagging red blood cell count -- which has become an issue with Medicare and most insurance cos who don't want to pay for the $7,000 injection for NON CHEMO patients. Herceptin patients receive a monoclonal antibody and have been left in the lurch on this issue, in the last month! I remain positive it will be resolved, but worry that if my dipping red blood counts go unchecked, my health will obviously reflect that. Do I have to become hospitalized before I get help? Who will speak for this small group who have what my doc calls "chemo-induced anemia". Haven't been on "chemo" since '99. All blood tests show no reason for this red blood slippage. 1 shot last 3 mnth usually. But NO shot, leaves me...ANDREA PS PUT "YOUR" NAME ON THE SURVIVOR'S LIST YOU ARE ACCRUING! THINK OF YOURSELF AS A PART OF THAT GROUP. INSIST UPON IT! DAILY! AND DON'T FORGET TO SAY THANK YOU FOR YOUR GOOD FORTUNE WITH EACH NEW DAY... EACH DAY IS A GIFT.
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04-21-2007, 12:34 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Could set up a poll ...
A survivor poll that would ask how many years in remission and their stage.
Would work on it, but no time today. I think it is a worthwhile idea.
You will see by my story at the end of my post that I am over six years since dx and more than 5 years NED on Herceptin, being stage IV. Had extensive liver mets and poor prognosis, but fought really hard with some tough drugs in the mix to achieve a complete response. Like the amazing TriciaK I have used guided imagery in my healing.
Hope these answers help your husband to have a little faith, even though this is a sneaky, pernicious disease.
My best advice - cut out the sugar as cancer feeds on simple sugars.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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04-21-2007, 01:31 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Cancer Loves Sugar
So did I. Chocoholic. But since I heard this pearl of wisdom from several different sources, and found sugar to be a trigger food for the IBS (IRRITABLE BOWEL DISORDER) that came with the Taxotere in '98 and never went away -- I have decided to stay off of sugar. Been sugar-free since '04! Not a single bite even of birthday cake. I consider it poison. So, I' m w/Stephen on this. Amazing story of heroics and determination. Expectation and Intention = End Result, I always say. I was adamant about not giving in to my poor prognosis. SOMEONE has to fall in the Survivors's group. They're the most passionate, positive focused of the lot. THE BRAVEST ARE THOSE WHO HAVE THE CLEAREST VISION OF WHAT IS BEFORE THEM, AND YET, GO OUT TO MEET IT. YOU MUST DO THE THING YOU THINK YOU CANNOT DO AND BELIEVE IN YOUR POWER TO ACHIEVE IT! We are each just this side of becoming a miracle! God bless... Please keep us all updated on your findings and ponderings. Networking is a grand way of supporting one another. ANDREA
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04-21-2007, 01:38 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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My story is my signature - except to add - eat right and exercise at least 5 hours per week.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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04-21-2007, 02:57 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Ohio
Posts: 212
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My story is in my signature as well--looking forward to 6 years of survivorship after a poor prognosis in 2001.
__________________
Audrey
diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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