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03-17-2011, 03:10 AM
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#41
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Senior Member
Join Date: May 2010
Posts: 415
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Re: Calling all stage iv sisters
Hi All Sisters
I coaxed Hema to read all the posts in this thread and her outllo hjas turned +ve
Thanks and God Bless
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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03-19-2011, 09:09 AM
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#42
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Senior Member
Join Date: May 2006
Location: California
Posts: 490
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Re: Calling all stage iv sisters
Hi Jean,
I just saw the posting.
I guess so far am the oldest stage IV on the site.
July 2003. Only God know how long I had the tumor, just not dx'ed.
Stage I -- June 1994. Found a lump on my way to Hawaii--my honeymoon!
Waited until November to see a doc. Oficially dx in December 94.
Currently doing well on the TDM1 Trial.
Love,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to Herceptin
Xeloda- did not work
2007-May - Back on Navelbine+Herceptin
2008-Feb-Mar -15 Ses Rad to Rt. Lung
Cont Herceptin.
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discont trmt due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue.CA2729 Normal.
2013 April Herceptin-Perjeta-Taxotere
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03-19-2011, 05:02 PM
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#43
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Senior Member
Join Date: Nov 2004
Posts: 184
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Re: Calling all stage iv sisters
Where do I begin? My thread is pretty accurate. People are shocked when I tell them I have cancer. I still am having a persistent booger in my sternum. Hope to get if fried with radiation in two weeks. Just like Mamacze said "Blessings Abound"
KIM
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27 Start omitarg, herceptin, taxotere trial
3/17 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Rads to the sternum
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03-19-2011, 07:05 PM
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#44
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 539
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Re: Calling all stage iv sisters
I was diagnosed stage IV in February of 2007. There is some doubt as to whether I was stage IV or not but so far I'm still here!
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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03-23-2011, 12:56 PM
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#45
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Member
Join Date: Mar 2011
Posts: 5
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Re: Calling all stage iv sisters
I have been stage 4 since June 2010 and am currently NED. I was looking for information on staying on herceptin forever. I see many of you have been on it for a long time and are NED. I'm so encouraged. Its been a scary year.
-------------------------------------------------------
Diagnosed 12/06 - Stage 1 - IDC - Her 2 +++
Lumpectomy; A/C; Rads; Herceptin for 1 year
6/10 - Stage 4 - skin and lung mets
7/10 - lung wedge resection
6 - TCH cycles continuing on 3 week herceptin
12/10 Mastectomy
3/17/11 - NED
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03-23-2011, 04:43 PM
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#46
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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
DianaMK,
For us that are stage IV the standard of care is to stay on Herceptin for the rest of our life. And yes...you should be encouraged by that as we have so many ladies on this board that have done their chemo and maintained and stayed NED on Herceptin alone. 
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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03-23-2011, 05:13 PM
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#47
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,197
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Re: Calling all stage iv sisters
I'm not great at math, but it seems that (33) of us have lived over 145 years with stage 4.
Just sayin'...
__________________
1996 cancer?! 1.3 cm lumpectomy(20nodes NEGATIVE) CMF + rads.
’02 recurrence. bilats.w/recon. ACx2. skin lymphatic rash. taxotere w/Herceptin x4. Herceptin/zeloda.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. continue herceptin only thru 4/04 NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out.
1/06 RE-radiation to scar line. NED.
3/07 mets! lungs.sternum. Tykerb/Xeloda boo. Tykerb/Carbo/Gemzar boo.
12/07 Herceptin.Tykerb.GOD.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE. Sternum boo.
4/09 attack sternum: rads for the third time…
(10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Doctor is perplexed at such improvement without treatment. Cautiously Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal
MAR 2011 stop Herceptin - weird allergy. Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 – drop everything and join a sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA, ALMOST 6 YEARS STAGE 4 AND 17 YEARS FROM ORIGINAL DIAGNOSIS! continue Herceptin, Avastin, Zometa, Perjeta
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 years stage 4.
"FAILED" PETscan on 4/2 (WTF) so have no idea how I'm doing and am not sure how soon to safely repeat...feeling very close to the edge.
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03-23-2011, 05:55 PM
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#48
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Member
Join Date: Feb 2007
Location: n.c.
Posts: 8
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Re: Calling all stage iv sisters
Stage 4 Since Aug 2006. Mets to the liver. I have been on four different combinations with herceptin and tykerb. Started Halaven Dec 2010, and now adding tykerb back in to the routine. Still working and making the most of life. God is faithful.
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03-24-2011, 04:26 PM
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#49
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Member
Join Date: Jul 2007
Location: Surrey (UK)
Posts: 9
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Re: Calling all stage iv sisters
I haven't got round to setting out my journey - it seems to have been so much part of my life. It all started out in 1990 with first recurrence in 1996 and from then on seemed every couple of years till I moved to stage IV in 2002 with extensive spread to my bones. Have been through so many chemos and by 2002 I was on xeloda and had to come off that after 2 cycles because of too many se's. Went on to Navelbine which seemed to work (this could be seen by the reduction of the lymph node swellings all around my neck. But at end of chemo they were back  . It was then that they checked out my her2 status and found it to be her2+++ and I went on herceptin. The effect was instant - those lymph nodes all went down - even to the point that I got full movement in my neck back again - I had probs turning side to side. Since 2004 I have been on just herceptin & pamidronate and latterly zometa every 3 weeks. Generally keeping ok but last 3 years problems with a tumour next to my lumbar spine causing nerve pain problems. But given I have clocked up 21 years with bc I am not doing too badly living with it.
asahizuru
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03-28-2011, 10:24 PM
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#50
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Junior Member
Join Date: Mar 2011
Posts: 1
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Re: Calling all stage iv sisters
Dear all ladies,
I am here for my mom , she is 63 years old and newly diagnosed as BC , stage4 and liver mets ( multiple), the biggist one is 7cm .
But she is also a Hepatitis B Virus(HBV) carrier , she is asian .
My question is : the diagnosed date is on March 17 and hosipital will start the chemo therapy on April 16 , will this time too late ?due to we want to join a clinical trail.
I feel much better when i know there are so many stage 4 women hanging over there , because my mom gets so upset and depressed once the dr. said she only got 2-3 months to live.
Thank you all .
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03-29-2011, 07:52 AM
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#51
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Senior Member
Join Date: Aug 2010
Posts: 997
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Re: Calling all stage iv sisters
Hi, Vivienne,
I'm so sorry to hear about your mother's diagnosis. But tell her to hang in there! Through you, she can get a lot of inspiration from our stories and successes. It's such a blow to get a diagnosis such as this. Where are you located? I think treatment is starting within a reasonable amount of time, that's about how long it took me to get started. Is mom HER2+? I'd be depressed if my doctor put a timeline on me, too...I'd tell your mom to tell the doctor, "Watch me!"
Hugs and welcome,
Karen
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04-02-2011, 08:49 PM
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#52
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Senior Member
Join Date: Oct 2008
Posts: 88
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Re: Calling all stage iv sisters
Hi Ladies:
I was dx Stage 3C in beginning, 2005. I'm triple +. Surgeon said my bc was missed for 4-6 years on mammo's due to dense tissue. Devastating for sure. I went to mets (liver and soft tissue) in 2010.
End of 2010, major progression in liver and onc wanted ALOT of tx to stop it. Per signature below, I did and it's working. I was in a tight, tight spot last Christmas, but now feel there's hope - especially w/all the new her2+ drugs coming out.
Onc wants me to stay on this tx for 4 more rounds - as it's going well. Ixempra/Avastin first tx to touch my medistanil mets (by the heart) in 2 years - reduced it 40% in 4 rounds, and reduced liver mets by 50% as well.
It's not easy, but there's hope.
- Kim
__________________
------------------------------
Dx Stage 3C 2005, triple +, tons of lymph nodes as well. FEC, surgery, TCH, rads, herceptin 1 year. And, Aromasin.
2007 - recurrence to medistinal lymph node, Abraxene and Herceptin - took it down 50%
2008 - on Arimidex/Herceptin - stable lymph node.
2009 - stable on Arimidex/Herceptin
2010 - lymph node progression and liver mets.
2010 - went on Gemzar, Navelbine, Herceptin - Navelbine and Herceptin took liver mets down. lymph node slightly progressed.
2010 - did Xeloda & Tykerb - MAJOR progression in liver in only 6 weeks.
Dec 2010 - present - Ixempra/Avastin/Herceptin/Fasoldex - regressing
June 2012 - chemo break
Sept 19, 2012 - start t-dm1. Chose this over going back on Ixempra.
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04-03-2011, 02:08 PM
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#53
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Junior Member
Join Date: Feb 2011
Posts: 3
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Re: Calling all stage iv sisters
Diagnosed stage 4 IBC 5-28-10. Received 5 chemos treatments, mastcetomy, then three more chemo treatments. Went for radiation after and will be on Herceptin the rest of my life and zometa for 2 years. Recent pet scan 4-01-11 shows no sign of cancer at this time. I missed one day of work. Enjoy life.
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04-03-2011, 03:12 PM
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#54
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Calling all stage iv sisters
Vivienne
I was diagnosed with multiple liver mets (largest 9cm) in 2006. I'm still enjoying life but have had lots of treatment since then. There is plenty of reason to hope. All the best,
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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04-03-2011, 06:40 PM
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#55
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Senior Member
Join Date: Oct 2008
Posts: 88
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Re: Calling all stage iv sisters
Wow Trish - thanks for posting your update. Congrats!
__________________
------------------------------
Dx Stage 3C 2005, triple +, tons of lymph nodes as well. FEC, surgery, TCH, rads, herceptin 1 year. And, Aromasin.
2007 - recurrence to medistinal lymph node, Abraxene and Herceptin - took it down 50%
2008 - on Arimidex/Herceptin - stable lymph node.
2009 - stable on Arimidex/Herceptin
2010 - lymph node progression and liver mets.
2010 - went on Gemzar, Navelbine, Herceptin - Navelbine and Herceptin took liver mets down. lymph node slightly progressed.
2010 - did Xeloda & Tykerb - MAJOR progression in liver in only 6 weeks.
Dec 2010 - present - Ixempra/Avastin/Herceptin/Fasoldex - regressing
June 2012 - chemo break
Sept 19, 2012 - start t-dm1. Chose this over going back on Ixempra.
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04-04-2011, 08:41 PM
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#56
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Senior Member
Join Date: Feb 2006
Posts: 1,007
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Re: Calling all stage iv sisters
I was diagnosed stage IV in December 05. I have been NED now for 5 years and continue on with Herceptin indefinately. My oncologist doesn't do tumor markers, I have PET scans every 6 months. Glad to see all the stage IV survivors coming out. ..sherryg
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
6 years NED now
Scans every 6 months
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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04-20-2011, 01:16 AM
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#57
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Senior Member
Join Date: May 2006
Posts: 157
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Re: Calling all stage iv sisters
Diagnosed in April 2005 with stage 3C, then stage IV in November 2005, with mets to lung and liver. Have been on different treatments all these years. Liver mets are gone, but lung mets are still here. Now on Halaven and Herceptin.
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05-07-2011, 09:39 PM
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#58
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Junior Member
Join Date: Jun 2009
Posts: 2
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Re: Calling all stage iv sisters
I also have been observing since dx 5/09 stage 3a-now as of 2/26 stage IV to mediastinal lymph nodes and left lung. Having hard time, children are 3 and 5, and I love them with all my breaking heart. Thank-you for your positive story and support. Sometines it's those people we never meet that we touch the most. (DQ1)
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05-08-2011, 02:56 AM
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#59
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Calling all stage iv sisters
So encouraging to read these thoughts from all of you amazing women! Thank you for sharing!
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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05-08-2011, 03:07 AM
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#60
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Guest
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Re: Calling all stage iv sisters
Diagnosed with Stage IV in January 2007. In remission since finishing initial round of chemo. Herceptin infusion every 3 weeks for rest of my life (or until something better is invented), scans every 4 months. Work full time, exercise, completely normal quality of life. I feel incredibly blessed and am thankful every single day.
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