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01-19-2011, 09:35 AM
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#1
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Senior Member
Join Date: Aug 2006
Posts: 79
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Re: Calling all stage iv sisters
Stage IV for 8 years--doing well.
Kathy T
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01-19-2011, 09:42 AM
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#2
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Calling all stage iv sisters
Diagnosed stage IV Feb 2009. Currently on Tykerb/Herceptin and NED.
Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well. |
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01-19-2011, 02:47 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Calling all stage iv sisters
I was orignally dx stage IIIA...but I now know I was stage IV from the get go. I had bone mets to rt femur they missed. So have been stage IV for a bit over 5 yrs now and still going.
Pam,
My onc does the CA27.29 and we know that they work well for me. If my CA27.29 starts climbing we scan...and go from there. Trt decisions are never made from markers alone...only scans. As to the range...mine have always been pretty low...the highest they got once was in the 60's. Mine will normally range from 12 to 18...but mine are on the move as we speak. My bone mets are acting up.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-05-2013, 04:48 AM
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#4
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Senior Member
Join Date: Dec 2012
Location: Attica, IN
Posts: 371
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Re: Calling all stage iv sisters
I am soooo glad to be Done with herceptin.!!!! My feet ankles hurt so much, I had it on August 20th and they just aches! Any idea on things to try. 
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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09-05-2013, 11:51 AM
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#5
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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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Re: Calling all stage iv sisters
CONGRATULATIONS!
Works for me, and many -- Co Enzyme Q10 -- 150 mg
AM + PM w/food
Alpha Lipoic Acid -- 300 mg
AM + PM w/food
L- Carnitine -- 500 -- 500 mg
AM + PM on empty stomach
Let me know if this combo works for you, please!
With love,
ANDI
__________________
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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09-05-2013, 05:43 PM
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#6
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Junior Member
Join Date: Nov 2011
Posts: 3
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Re: Calling all stage iv sisters
Andrea,
My wive, Marsha, diagnosed 7 + years ago with stage 4, multiple liver mets, has been NED 6 years. She has beeen off Herceptin since March 2011. All her PET scans since 2006 have shown her to be NED.
I'm so happy for you. It's good to know that you can beat HER2.
Rick
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