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03-30-2012, 08:19 AM
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#21
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: courtney is starting hospice
Dear Courtney and Jay,
Sending you words of love, wishes and admirations of your fortitude and care in these trialling moments. I am comforted by the bound you have and the wonderful moments you are living despite the difficulties. May the reminiscing continue for long and what seems to me to be the tapestry of colors that so illustrate how brave and kind Courtney has been through her ordeal.
With Love
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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03-30-2012, 08:40 AM
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#22
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Senior Member
Join Date: Jan 2010
Posts: 170
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Re: courtney is starting hospice
I am so sorry that yet another young woman is taken from us so soon. May Courtney and her family find peace.
she will not be forgotten.
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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03-30-2012, 11:16 AM
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#23
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: courtney is starting hospice
Courtney and Jay,
Both of you are in my prayers. May peace be with both of you.
Amelia
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03-30-2012, 01:55 PM
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#24
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: courtney is starting hospice
Courtney and Jay,
Peace be with you in your last days and hours together. I believe that nothing can separate you from God's love, and I believe that your love, also, will never die.
Cherish every breath. Go toward the light.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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03-30-2012, 02:47 PM
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#25
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: courtney is starting hospice
Jay,
I'm praying for Courtney, you, and your families. I was very happy to have met Courtney and her mom at SABCS last year and glad that she was able to attend. You have a beautiful wife.
Joan
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03-30-2012, 08:15 PM
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#26
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: courtney is starting hospice
My thoughts are with this brave, beautiful young woman Courtney and all of the courage and fortitude that are so evident in your posts. Ceesun
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03-30-2012, 08:40 PM
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#27
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Senior Member
Join Date: Sep 2011
Location: Lovington, New Mexico
Posts: 100
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Re: courtney is starting hospice
What an incredible journey you've been on. I am so new to this, and it breaks my heart to read about you Courtney and Jay. The kinship I have with you includes UCDavis, and this support group. Thank you for sharing your story. Prayers and blessings and thoughts headed your way.
__________________
7/25/2011 Diagnosed DCIS and IDC on left from biopsy.
8/9/2011 Bilateral mastectomy
7mm clear margins Stage 1b, grade 3, 0/4 SLN ER- PR+ Her-2/neu +
9/19/2011 Started TCH every 3 weeks, TC for six cycles, Herceptin for 1 year
May all of your dreams bloom like daisies in the sun....
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03-31-2012, 04:19 PM
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#28
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: courtney is starting hospice
Beautifully written but heartbreaking to read. This disease sucks.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (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 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 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 continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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03-31-2012, 08:53 PM
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#29
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: courtney is starting hospice
I second what SoCalGal said. There are no words to express the emotions. And my admiration and respect for Jay know no bounds.
Keep the faith.
ETA: Is there a link to the Caring Bridge site???
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
Last edited by BonnieR; 03-31-2012 at 08:57 PM..
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04-01-2012, 07:11 AM
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#30
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Senior Member
Join Date: May 2011
Posts: 137
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Re: courtney is starting hospice
Here is a link to Courtney's site: Courtney's caring bridge site
Jay and Courtney,
even as this next chapter unfolds I find such courage and strength in your words. My heart is broken, and yet for Courtney to have such clarity and hopefully peace in these days ahead is such a testimony to that indomitable spirit that knows no bounds.
Peace and love to you both, and many prayers...
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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04-01-2012, 07:36 AM
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#31
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: courtney is starting hospice
I am so sorry and sad to hear this. My love and prayers go out to her and her family. May she be without pain and in peace.
hugs and love
sarah
__________________
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04-01-2012, 06:02 PM
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#32
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: courtney is starting hospice
No words .. They seem inadequate.
Sending strength and love for the days to come.
Marcia
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04-01-2012, 09:54 PM
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#33
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Senior Member
Join Date: Jul 2008
Posts: 96
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Re: courtney is starting hospice
I love you Courtney!!! Praying for you and your family.
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04-02-2012, 07:10 AM
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#34
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Senior Member
Join Date: Jan 2010
Location: Wisconsin
Posts: 80
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Re: courtney is starting hospice
I also received the update on her Caring Bridge site. I was sad to hear this. My thoughts and prayers go out to her and her family. So sad, (&@*&(@ Cancer!
__________________
Sandra from WI
Stage 1, Tumor 1.4 cm, Grade 3, ER-/PR-/HER2+++
Poorly Differentiated IDC with comedo type necrosis with DCIS/ALH :(
Mammogram: 11/12/09
Call Back Mammo: 11/17/09
Biopsy: 11/25/09
Diagnosis Call: 12/2/09
Partial MX: 12/16/09. 3 LN clean.
6 Cycles Chemo (TCH) Jan-April/10; Herceptin all of 2010; 33 Rads complete 7/10. Herceptin done 12/10.
FOLLOW UPS:
Bil mammo, and Breast MRI 12/10 - CLEAN! (after a second lump was biopsied and BENIGN - showed giant cell reaction?).
Bil mammo 6/11 - CLEAN!
Left mammo 12/11 - CLEAN!
PET/CT scan 4/6/12 - CLEAN!
Bil mammo 8/12 - CLEAN!
November 2012 - Gallbladder Removed.
Bil MRI 2/13 - CLEAN!
http://www.caringbridge.org/visit/sandragreen
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