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04-17-2007, 09:28 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Not the news I was hoping for...
Hi friends,
HEY, My liver's back!
I got the results of last week's PET/CT scan, which was done to clarify and get more information on the new recurrence in my liver.
The good news (I guess!) is that the left lobe of my liver, which the original scan reported appeared absent, is back! The not so good news is, there is a 3.5x2.3cm lesion there, in addition to the 1.5cm one in the right lobe. That actually makes sense, as with my previous recurrence the left lobe was pretty much "completely involved"
So, although I enjoyed my little boat trip on "de-nile" , I guess it's time to add some bigger, or at least different, guns. I've got a couple of more hoops to jump through first, but I expect to start on a clinical trial of Tykerb + Avastin next week. I will be under the care of Dr. Hope Rugo, so I know I am in good hands. In her words yesterday, I lose nothing by trying this combination which could work for some time...and then I STILL have all the chemo options. Yippee!
So, although I'm a little discouraged (My heart really sank when I got that news), I'm not ready to quit yet!
Thanks for all your support.
__________________
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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04-17-2007, 09:36 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Chrissy
I am so sorry to hear that both sides of your liver have decided to be a pain...you have such an upbeat attitude....I know you will show them who is boss! Heres to the Tykerb Avastin cocktail....may it remove the invaders and send them packing!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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04-17-2007, 10:11 AM
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#3
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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Sorry to hear the news. Hold your chin up high, you and your smiling picture are an inspiration to a lot of us here. Thank you for sharing,we are all here to support you.
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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04-17-2007, 10:24 AM
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#4
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Ah, Chrisy, the "Trip down De-Nile" is one I'm quite familiar with~ Sorry it's back to the old grind, but like you say, it's good to have options. As long as we have options, we have hope! Hang in there, and KUDOS for entering this trial, it's so important to find which agents are going to work best with Tykerb! We will all benefit from your experience, so keep us posted, and best best wishes.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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04-17-2007, 11:23 AM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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You are 'whole' again ...
Dear Chrisy -
Glad they "found" the rest of your liver! What a hoot ...
Just not the part about it containing tumor. You could have done without that I am sure.
Having one of the "Superstar" oncs is a great comfort and takes you into this new round of treatment with a good measure of confidence. That is the only kind of med onc I will have and they have done right by me so far.
Remember that the liver is one of the easier places to treat, and the proposed regimen sounds like something I would consider wholeheartedly if my cancer kicked up again.
__________________
"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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04-17-2007, 11:42 AM
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#6
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Chrisy - I'm sorry to hear your liver is acting up. With your positive attitude and good medical guidance from your oncologist, I'm betting on you and that you will get this under control. You are in my prayers!
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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04-17-2007, 12:00 PM
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#7
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Senior Member
Join Date: Aug 2006
Posts: 492
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Chrisy,
I hope the news about your liver isn't going to keep that smile of yours down. I am hoping the very best results from your new treatment. Can they really take that pesky lobe out surgically so that it really disappears?
As a side note, my ENT's office called today to schedule a scan of the thyroid I had removed in December. I told them to check with the pathology department.
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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04-17-2007, 12:06 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Chrisy,
I'm so sorry to hear your news. I'm praying that the Tykerb/Avistan will do the trick. And, as you said there are plenty more chemo cocktails out there.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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04-17-2007, 12:30 PM
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#9
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Chrisy,
I am so sorry for your news. You will be in my thoughts. Best of luck to you.
Hopeful
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04-17-2007, 12:40 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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"escaping" tumor on the loose
One of the things I love about my onc is the way she expresses things. She said of this new activity in my liver "Well, it looks like it's escaping the Herceptin". Well, let's hope we can recapture it, punish it, put it down and get back under control!
__________________
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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04-17-2007, 12:44 PM
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#11
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Senior Member
Join Date: Nov 2006
Location: London, England
Posts: 96
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Chrisy
I haven't been on this site very long, but I've enjoyed your postings and your sparkly smile makes me feel cheered whenever I see it.
Best of luck with the road ahead...I'll be thinking of you, and sending good thoughts all the way across the ocean from here in sunny London
Caroline
__________________
Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years
Considering reconstruction, maybe soon...
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04-17-2007, 01:05 PM
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#12
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Chrisy,
You are always so courageous and always have such a beautiful positive attitude. I am sorry that you have to deal with your liver. But I am
pulling for you and praying that Tyikerb/Avistan will kick it right out.
Sending you prayers and hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-17-2007, 01:05 PM
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#13
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Sorry to hear about your recurrence Chrisy - but it sounds like you and your onc. will fight it with everything out there.
Good luck with your new treatment plan.
Caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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04-17-2007, 02:21 PM
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#14
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Chrisy,
Shoot! Not the news we were hoping for exactly. Your terrific attitude will get you through this bump in the road. I hope NED finds you very soon. Kill the beast!
Hugs and Prayers,
Lexi
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04-17-2007, 03:04 PM
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#15
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Senior Member
Join Date: May 2006
Posts: 143
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Chrisy:
Good luck with this new treatment. It sounds like it won't be too hard to tolerate -- much easier than standard chemos. Lots of positive liver thoughts from up north of you.
Linda
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04-17-2007, 05:11 PM
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#16
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Chrissy! I see no quitter in that wonderful face of yours! Discouraged for a bit, but nothing but fighter in you! I so hope that this is just the right mix for you to reclaim your good health and NED. Wishing you sweet dreams and a powerful battle won! 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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04-17-2007, 06:57 PM
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#17
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Member
Join Date: Jan 2006
Location: Baldwin, Maryland
Posts: 15
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Chrissy,
I am sorry to hear of your recent recurrence. I wanted to share some very encouraging news. I am currently on the Tykerb/Xeloda trial and a women in our group who has liver mets just had her first scans at 6 weeks. In just 6 weeks her liver mets reduced by 50%.
Hang in there! Here's to the tykerb/avastin cocktail and another NED.
Lori
__________________
Aug '03 - diagnosed Stage III, Her 2 +++, ER - , PR-
Oct - Jan '04 - dose dense Taxotere (3 cycles) followed by A/C (5 cycles)
Feb '04 - L. Mastectomy, 15 nodes removed - 8 contained micrometastatic disease
Mar '04 - 4 1/2 weeks radiation
Apr '04 - started herceptin 52 weeks completed May '05
Dec '05 - Stage IV extensive lung mets to right & left lungs
Jan '06 - Xeloda 4 months til progression
Jun '06 - Jan '07 - Herceptin & Pertuzubmab every 3 weeks til progression
Feb '07 - Tykerb/Xeloda
June '07 - Taken off Tykerb/Xeloda protocol as lung mets had progressed and now had brain mets as well. Treated upfront with Gamma Knife Radiosugery for brain mets and started Doxil on 6/26/07.
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04-17-2007, 06:59 PM
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#18
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Chrisy,
Oh, you doll! Your smile and your positive spirit absolutely lift my spirit and put a smile on my face.
Yes, this beast is tough and it sure can knock us on our A _ _!!!! BUT we can kick back and knock it flat on it's A _ _ too and I know you will do just that.
I said a prayer for you as I was typing this and ask the Lord to bless you with His strength and Peace as you go along your journey.
Hugs to you Chrisy,
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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04-17-2007, 07:32 PM
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#19
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Senior Member
Join Date: Jun 2006
Location: Grand Terrace, Southern California
Posts: 114
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I am so sorry that the monster came back. I just want to wish you well and a speedy recovery. ((((Hugs)))
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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04-17-2007, 08:03 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Keeping you in my thoughts and prayers. You have the strenght and courage to move on!
________
ZOLOFT LAWSUIT INFO
Last edited by sassy; 08-22-2011 at 09:14 AM..
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