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Old 01-18-2011, 05:35 PM   #1
Jean
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Location: New Jersey
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Calling all stage iv sisters

Please report in and let us know how long you are stage IV ...recent stat reports have shaken up some of our newer members and they need to hear from some of you ladies who are defeating the odds.

God Bless,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-19-2011, 04:53 AM   #2
Trish
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Re: Calling all stage iv sisters

Four years to date since liver met diagnosis. I'm enjoying life and am hopeful of much more of it.
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 01-19-2011, 05:18 AM   #3
Pam P
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Re: Calling all stage iv sisters

diagnosed 111c in 6/2001; declared stage iv with bone mets 9/02.

I'm still here!

I have a question for stage iv folks:

Who gets regular ca2729 tumor markers done? Does you onc. use them or not at all?
If you get them, what do they range for you? Do treatment decisions ever get made from the markers or only scans? Thanks. Pam
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 01-19-2011, 06:37 AM   #4
Colleen007
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Re: Calling all stage iv sisters

Passed my 5 year Stage IV mark in October (originally diagnosed at Stage IV with mets to bone and liver). And am thankful that I am HER2+ as I think that has given me many more treatment options (many of which I haven't tried...yet). According to my oncologist, there are still many things in the pipeline to try and I plan to be here for many more years!

Pam - My oncologist used to run the 27-29 and the 15-3 which I'm told are pretty similar. They now only run the 15-3 so I'm not even sure what the range is anymore for the 27-29. She wouldn't change treatment just based on tumor markers...when mine have been elevated, I get sent for a scan and any changes would be based on the scan results. Hope this helps.
__________________
Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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Old 01-19-2011, 07:16 AM   #5
Missyw
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Re: Calling all stage iv sisters

Hi Jean,

I was diagnosed Stage IV (liver mets) in August of 2006; NED after chemo for three years; single met back in liver 2009; (Navelbine, resection) back to NED since then. I work full time, Mom full time (two teenagers!!) wife full time, volunteer, vacation and in general lead a completely "normal" life. I get my Herceptin every three weeks and try to remain hopeful. Yes, it can be difficult, but there really is so much hope. To my Stage IV sisters: please stay strong.
__________________
Missy W.

Diagnosed 1/06; Her-2, er/pr+
lumpectomy
4 Rounds A/C
tiny area of interest in liver - watching
12 rounds of Taxol w/ Herceptin
tiny area cleared - Stage IV (because area responded to chemo)
Herceptin weekly
27 rounds radiation
NED 8/06
10/06 oopherectomy
Arimidex
1/07-7/07 Vaccine Trial - UW Seattle
3/09 liver met back
3/09 Navelbine, Herceptin Aromasin
6/09 Liver Resection
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Old 01-19-2011, 08:46 AM   #6
Joan M
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Re: Calling all stage iv sisters

Diagnosed stage 4 in January 2007.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Living with MBC for 11 years. Praying for NED forever!!
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Old 01-19-2011, 09:35 AM   #7
Kathy T
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Re: Calling all stage iv sisters

Stage IV for 8 years--doing well.
Kathy T
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Old 01-19-2011, 09:42 AM   #8
Nancy L
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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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Old 01-19-2011, 02:47 PM   #9
Chelee
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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
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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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Old 01-19-2011, 03:10 PM   #10
Lori R
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Re: Calling all stage iv sisters

40 months and still loving life.

My lengthy treatment history might lead someone to believe these last 3 1/2 years have been miserable. Not true!!!! I've been very busy and active. Definately a life worth living.

Hang in there!!! Never count yourself out.
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 01-19-2011, 03:25 PM   #11
DeenaH
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Re: Calling all stage iv sisters

Thank you so much for this post, ladies!! I needed this today. My diagnosis went from Stage IIIC to IV last week, and it's very scary. Hearing success stories definitely helps alot.
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 01-19-2011, 05:36 PM   #12
Barbara H.
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Re: Calling all stage iv sisters

I have been stage 4 since May 2004. I will reach the 7 year mark this year. I am currently on Herceptin and Tykerb and doing well. I also work full time.
Barbara H.
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Old 01-19-2011, 06:24 PM   #13
chrisy
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Re: Calling all stage iv sisters

Stage 4 since Sept 2004
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 01-19-2011, 07:41 PM   #14
Sheila
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Re: Calling all stage iv sisters

Stage IV since 9/2003
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 01-20-2011, 12:35 AM   #15
harrie
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Re: Calling all stage iv sisters

Great thread Jean! Cheers!!!
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 01-20-2011, 01:26 PM   #16
suzan w
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Re: Calling all stage iv sisters

This is a great post, Jean...thanks...and cheers to all the stage iv sisters!!! XO
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
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Old 01-20-2011, 03:34 PM   #17
Trish
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Re: Calling all stage iv sisters

Pam, I only have CA15-3 done and always have a scan for the purpose of treatment planning. I'm told under 30 is within normal range. Lowest I have been since mets is 68, highest 2000 or so. Have just had a big drop and am 621.Hope both our numbers keep dropping, Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 01-22-2011, 07:41 PM   #18
nsebesta
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Re: Calling all stage iv sisters

I have been snooping in this forum for 7 years w/o signing in. I've received so much encouragement from so many of you. I thought this may be the time to 'help' other new comers feel hope. I became stage IV in May 2004 with 2 liver mets. After 8 mos. of chemo had surgery at MDAnderson on February 2, 2005 and have been NED since. I have been on Herceptin since Arpil of 2004 and have lived a very good quality of life. Never give up. We never know what God has in store for us.
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Old 01-22-2011, 09:33 PM   #19
mamacze
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Re: Calling all stage iv sisters

Blessings abound! I am 7 years NED; after a diagnosis in 2004 with mets to the liver and all 4 lobes of my lungs. How grateful I am for all the sisters on this site. I have been on Herceptin for 7 years. Sisters with mets; please weigh in...see my thread...are all of you on Herceptin for the long haul? Have any of you with NED taken a Herceptin holiday?
Love Kim from CT
__________________
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 01-23-2011, 10:55 AM   #20
Ceesun
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Re: Calling all stage iv sisters

Stage IV for over 4 years...Ceesun
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