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04-03-2008, 12:57 PM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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back from doctors
Well, the PET confirmed that there is progression in the liver. She is referrring me to a radiologist for RFA, which I hope will be feasible. Size wise it is, she was just unclear about position. She is also going to call Dr. Geyer in Pittsburgh who pulled together the tykerb/xeloda trials and consult with him regarding what to do when patients progress on this combination. Do we keep the tykerb and add other chemos, do we dump the tykerb and look at completely different regimens? She felt like he would be a good resource. She also is thinking aobut avastin added to t/x or with herceptin and she is looking into the herceptin DM or whatever it is called. She feels that since I am tolerating tykerb and xeloda so well and it has maintained control everywhere else that we should try targeting this breakthrough tumor activity. And then see how it is going after that.
I am also going to see my specialist in Denver again as he is so positive and experienced. He always gives me a boost of confidence. She said we are no where near the crisis point we were a year ago and that this is not life threatening. I asked her how many more bullets I could dodge and she said, "Oh, 100!" She said that I'm stronger than I give myself credit for and there is no doubt that I can get through this. I'm still trying to believe that. Again liver function is good, brain MRI was clear, last mammo was clear, lungs and bone are stable.
Thoughts, comments, success story reminders...I'm open to all of it. Thank you guys so much for your concern and help and support and love and know I share all of that with you-every one of you!
P.S. I know a few people have posted on this, but I'm curious about anyone else. My hair is falling out a little bit on t/x and it really bums me out. Can that stop or does it just continue? Any hints on how to stop it?
__________________
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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04-03-2008, 01:49 PM
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#2
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Senior Member
Join Date: Apr 2007
Posts: 292
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Joy...I am sorry that I don't have any "words of wisdom" for you, but I can send out positive thoughts and prayers for you! I will be reading to keep up with your treatments. I am so glad that you have such great doctors--they sound like keepers!
Take care,
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA
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04-03-2008, 02:29 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Joy ...I'm sorry to hear that ...progre,...but your are optimist like I'm ......and with a lot of hope and with a Doctor's like you have I think that you are in the right path ...my best wishes ...and what you have in mind about tretment is excatly what I want for me ,about radiation etc ......................let's wait what our sister opinions are ...and I love your doctor in Denver ....I strongly thinking that we (all the Her2 group ) will go togethers to the Dr's appoiment ....that is a great idea .......tha be a (BIG PLUS)
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Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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04-03-2008, 02:45 PM
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#4
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Senior Member
Join Date: Nov 2007
Posts: 210
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joy.. its trastuzumab.. dm1... so far to date i think we have had about 6-7 girls on this board on this drug..barb and marcia.mpb. have been been on the longest 4-6 months.. a few others,, chrisy kyhome.. caryn.. all recently started...
lily was on it for about 4 - 5 months before progression restarted.. i know a few others on it... the docs running the weekly study love the drug.. apparently everyone on it at dana-farber and sloan-kett are doing very well..
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04-03-2008, 02:45 PM
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#5
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Senior Member
Join Date: Nov 2007
Posts: 210
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lily .. are u still on trastuz-dm1 or was that stopped..
run to live
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04-03-2008, 02:53 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Joy, it appears that you have great care. And I'd just bet that you can tackle 101 more battles! You are strong, wise, and positive. I'm sending up prayer flares for you! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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04-03-2008, 02:55 PM
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#7
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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I did stop , I'm now on tykerb and Xeloda ...and I'm waiting for 2 more weeks ...depends how the results are ...I like to do this radiosurgery using the NovalisĀ® Shaped Beam Surgery<SUP>TM</SUP> accelerator. but my Doc dosent aproved yet he said that is "no date yet" and they doing on Rochester and anothers states ,and the trial that he put me on DM1 "is not data yet" also ...and work for couples months with really no much side effects .....and that is the reason why I want to see another doct ...because I'm er+pr+ and I dont have any anti-estrogene blockers .....I'm nervous ...about the waiting time ... and so far he is not telling me what else is next .....thanks for asking
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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04-03-2008, 02:59 PM
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#8
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Joy, I have no words of wisdom, just sending lots of prayers your way!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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04-03-2008, 03:02 PM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Joy,
Just wanting to bring you special love and encouragement today. Yes, you ARE a strong, tough cookie and I don't doubt for one minute that you will come through this trial with flying colors.
God Bless Joy with continued strength.................
Love to you....
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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04-03-2008, 03:18 PM
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#10
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Joy -
It seems to be mixed news, but NOT bad. Your doctor feels good about it. They see so many patients unable to hang in like most of us can, and know what they are talking about when they say we are strong!
I pray that the RFA will be doable and will get you closer to that dance with NED.
I think you need some healing energy that a visit from Tiptoe and Tex can provide! They are great fun and there is a sense of power that they bring with them.
__________________
"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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04-03-2008, 04:05 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Wow Joy, you really have some great doctors! I love that she is really going to bat for you and looking into RFA, questioning the experts for "next steps" after T/X, and especially the strength she (and we) sees in you.
I particularly want you to pay attention to her comments regarding how "you are nowhere near the crisis point you were at a year ago" and that this progression is not life threatening. You are in fantastic health and apparently still quite agile as she feels you can dodge 100 more bullets. As Steph says, I think the good ones really can see what the patient brings to the equation, as well as what the medical community does. And you bring more stength, humor, and joy for life than almost anyone I know.
As for success stories, how about yourself for starters? How many times have you felt like you were at the brink and then stepped way back from the cliff and gone the other direction? I know you don't want to have to change your battle plan again, but I also know you WILL.
As for success stories with liver mets, don't forget Stephanie and Esther, and Irene has slapped down liver mets with RFA more than once.
Hang in there, dear Joy.
Chris
__________________
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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04-03-2008, 04:24 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Joy,
I just want you to know that you ARE one of the success stories and will continue to be with your strength and fantastic team of docs! My prayers are with you.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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04-03-2008, 05:43 PM
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#13
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Joy, you have so much positive energy pouring out of you, you can dodge this one, too. You're in my thoughts and prayers, Love, Bill
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04-03-2008, 05:54 PM
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#14
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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I am sending prayers your way. You are going to win this battle to.
Lisa
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04-03-2008, 06:07 PM
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#15
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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So sorry that you have to find yourself having to be brave again..
Also I wanted to say that for direct treatment to the liver I learned/was told that RFA or equivalent (i did laser) should be done on stable tumours only i.e. if they are growing they did not recomend it. So you may have to tame these first. I felt I needed to tell you about what I was told (i.e. this is why I had chemoembolisation first). However perhaps your liver mets are small and a large safety margin may be possible..so perhaps it is ok.
lots of loving and kind thoughts your way.
__________________
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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04-03-2008, 06:19 PM
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#16
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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All I can do is send my prayers your way along with all of the others! I'll be watching for updates.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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04-04-2008, 12:47 PM
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#17
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Senior Member
Join Date: Aug 2006
Location: PA
Posts: 188
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Joy,
Just wanted to add, I see that your Dr. is doing a phone consult with a Dr. from Pittsburgh. If You ever need to come to Pittsburgh for any reason, You are welcome to stay at my house.....
Thinking positive thoughts, and sending them all your way
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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04-05-2008, 08:18 PM
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#18
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Joy, if anyone can beat this it is you. You have everyone's support, prayers and positive thoughts. Just another log in the stream, fly in the ointment, nothing that you can't handle. Stay tough and positive.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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04-06-2008, 04:18 AM
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#19
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Senior Member
Join Date: Sep 2005
Posts: 589
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Joy,
Sorry you have to go through this now. Your doc sounds great and we all know that you are. My thoughts are with you as you prepare for this next phase in your fight with 100 bullets still in your gun.
Eric
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04-06-2008, 07:57 AM
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#20
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Just have to say again
YOU GUYS ARE THE BEST!!!! Thank you for all of your encouragement. I like to read and reread it when I'm down and doubtful and it helps so much. And Susan thank you for your beautiful offer of hospitality and I will keep that in mind definitely. Which reminds me that if anyone here ever needed a place to stay in Colorado for any reason I open my crazy home and would even reign in some of the crazy. We are not in the most beautiful part of colorado, but we have easy access to some lovely places around here. May is my favorite month in Ft. Collins. It is green after our 9 month brown season and flowers bloom so spectactularly here. It is usually warm and sunny. Just more to look forward to, right?
Thank you again!
__________________
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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