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11-07-2012, 07:16 PM
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#21
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: 12 years from lumpectomy and good news
Glad you are doing better.
The nurse who gave us the flu shots a couple of days ago also mentioned the shingle vaccine. We are also supposed to get the 10-year booster shots for whooping cough... (One of hubby's nieces is expecting later of the month, and she had told us (everyone) that we would not be allowed to see the baby unless we have had the shots... 
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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11-09-2012, 12:50 PM
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#22
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: 12 years from lumpectomy and good news
Steph Congratulations on your good news!
I'm so glad NED has a crush on you!
Now just need to get those leg issues resolved.
Sending hugs to our "pioneer woman",
Kim
PS: I posted a reply to you earlier, but who knows where in cyber space it ended up.
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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11-10-2012, 08:13 AM
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#23
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: 12 years from lumpectomy and good news
HOW DID I MISS THIS POST?!?!?! 12 YEARS .... NED..... NO HERCEPTIN FOR 4 YEARS?!?!?
This is kick up your heels news!!! You are nothing short of amazing Steph - and you hang in there with us serving up snippets of hope every single day! I am uncorking a bottle of wine - right now - to celebrate your good health!!
XOXO Kim (from CT)
glug glug!!
__________________
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
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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11-10-2012, 01:51 PM
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#24
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: 12 years from lumpectomy and good news
Congratulations on the great news Steph !!
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11-12-2012, 09:08 AM
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#25
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: 12 years from lumpectomy and good news
A HUGE CONGRATULATIONS AND HOORAY FOR YOUR WONDERFUL NED NEWS.
Wow, that is interesting about the leg. I will be very happy for you when you are running (yes running) around Seattle again.
Love,
K
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11-12-2012, 10:02 AM
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#26
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: 12 years from lumpectomy and good news
Hi Stephanie,
Re the shingles, is it too late to get the treatment for it? I seem to remember there's a short window to get treatment for it. Also people on this site have suggested we all get the Zoster vaccine to protect against shingles if we've had chicken pox. Unfortunately so far in France they don't consider it effective, not sure why - perhaps because it wasn't invented here!
Shingles is very painful, hope it's clearing up
hugs and love sarah
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11-12-2012, 10:09 AM
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#27
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: 12 years from lumpectomy and good news
Hi Stephanie,
I am glad that you are beginning to feel better. My oncologist will not allow me to have the shingles shot.
Best,
Barbara H.
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11-14-2012, 10:08 PM
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#28
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: 12 years from lumpectomy and good news
Hi Stephanie,
Glad to hear the great news.
Sending you a big cyber hug and prayers for a speedy
leg recovery. Ouch!!
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 hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment 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- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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11-15-2012, 12:31 AM
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#29
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 12 years from lumpectomy and good news
Thanks, dear friends.
I did have the Zoster shot a couple of years back, which is said to be about 85% effective against the actual shingles virus.
Since what I am getting over (YES! that pain is receding) is not exactly caused by that virus, I was told that I needed to wait out the nerve settling down. "Wait out" is RIGHT! I have never been so disabled for so long in my life.
My massage therapist is now able to work on my knee area and help with stretching out the stiff muscles and fasia. She comes again tomorrow. We have been working on some exercises which I am able to see some improvement with.
Not yet cleared to drive, but that should come when I see my neurosurgeon this coming Monday.
__________________
"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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11-16-2012, 04:27 AM
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#30
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: 12 years from lumpectomy and good news
Im sorry I missed this. Congratulations, Steph. That's really beautiful news. You give us all hope.
__________________
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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