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04-17-2007, 08:31 PM
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#21
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Senior Member
Join Date: Oct 2005
Location: San Francisco, CA
Posts: 96
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Hope
Hi Crissy,
I am sorry to hear about your latest adventure. You will be in my thoughts and prayers. I know you are in very capable and experienced hands. I met with Dr. Rugo when I was first diagnosed and she gave me the impression of being a true warrior type woman. I chose to go with another onc at CPMC for personal reasons (nothing to do with her at all) and am still happy with that decision, but I know that she is one of the best there is and hopefully help you capture and punish that sucker!
Hugs,
Patricia
__________________
age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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04-17-2007, 09:41 PM
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#22
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am so sorry about your setback, but I am hopeful that you will win this battle with your new regimen. Best wishes and I will keep you in my prayers.
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04-18-2007, 08:17 AM
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#23
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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well...no...
it doesn't sound like news one would hope for. i'd like to know where your liver went for that time. if it takes another vacation maybe you can go with it! I'm sorry this thing reared it's ugly head again. And I know how you feel and, ick!
I'm excited about the plan you have and that you are in great hands with Dr. Rugo. I hope you will continue to share the process with us. WE need to know how you are doing and what you need.
I'm thinkin' that now that you and NED know each other better that maybe he won't be so shy next time and you two can ROCK OUT!
love to you!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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04-18-2007, 08:19 AM
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#24
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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forgot
I was wondering if you had thought or discussed any radiological type options with Dr. Rugo. Like RFA or SI spheres and the like. It seems that you might be a great candidate for those deals. just thinkin'
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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04-18-2007, 09:32 AM
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#25
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Dear Chrisy,
Well my heart just aches for you. I know how dissapointing it is when that fickle NED just dissapears. Here's hoping your treatment gets rid of those spots asap. Sounds like it will be a do-able regimine and I will be sending positive thoughts and prayers your way. As Joy said, What about RFA, as well?
When it comes to this beast, "Show No Mercy!"
Love Kim in CA
__________________
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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04-18-2007, 10:02 AM
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#26
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Chrissy, you are a fighter and will fight through this also. I am sorry you are having to go through this. You are in my prayers ..sherryg683
__________________
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
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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04-18-2007, 01:36 PM
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#27
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Stay positive!
Dear Chrisy. I hear you sister, am on the some boat...my tumor on the rt lung is growing back and i may have to start some type of chemo -again- but hey!! as long as there are drugs available to us, we just have to keep on fighting!!!!
I'm praying for you, Chrisy. Hang in there.
__________________
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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05-01-2007, 04:48 PM
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#28
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Member
Join Date: Feb 2007
Posts: 23
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interested in how your trial goes
Chrisy: I'm very interested in how your avastin/tykerb trial goes. I'm about out of options (tykerb/xeloda only worked for a few weeks before I got necrotic bowel and had to stop), and I just stopped an experimental phase-II trial of HKI-272, a tyrosine kinase inhibitor from Wyeth because my lung mets exploded while I was on it for a month.
i'm considering avastin/gemcitabine/cisplatin as my last-ditch effort. I've heard great things about hope rugo too. the lapatinib was the only thing that I ever responded to, so here's hoping it works well for you,
Theresa
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05-01-2007, 05:22 PM
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#29
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Senior Member
Join Date: Jul 2006
Posts: 869
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Go get em Chrissy, just a blip in the road as a nurse said to me. Good Luck in the trial. xo Ceesun
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05-02-2007, 02:32 PM
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#30
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Senior Member
Join Date: Feb 2007
Location: Live in New York Monday through Thursday.Friday,Saturday,&Sunday Live in Cape May,New Jersey.
Posts: 36
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Chrissy
Sorry to hear of your news,I to belive in you .Keep the faith and the spirit.You will be in my prayers.
__________________
DX October 18,2006
Changed doctor for second opion
Dx November 2,2006
three tumors left breast,lymph nodes involed don't
know how many.Kidney failure postponed my surgery
which gave the doctors the opportunity to run test.
FishTest showed that I have her2 positive, mets to liver and bones.
Dx December 14,2006
one dose carboplatin
now once a week herceptin,taxol
once a month zometa
February 5,2007 pet scan showed everything good except bones
5-16-07 muga scan
5-17-07 pet scan
Everythig was clear taken off of zometa,chemo
herceptin every three weeks
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05-02-2007, 04:07 PM
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#31
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Sorry to hear , all my encouragement from London, it sounds like the type of drug cocktail I would consider myself too if my liver mets came back, I like the way your oncologist thinks!
StephN is right there are many options for the liver,
Best wishes
Kxx
__________________
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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05-02-2007, 04:36 PM
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#32
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Senior Member
Join Date: Nov 2005
Posts: 943
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Chrisy, I have faith in Tykerb as a miracle drug that indeed can knock down the her2pathway. I think your oncologist has made a great choice in Avastin and Laptinib combo. Many thoughts and prayers sent to you; keep the faith. I think positive fibrations and thoughts help your body fight the fight. Visualize and know that you are winning the battle.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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