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10-10-2006, 06:29 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Surgery is finally scheduled
Hello Survivor Sisters and their caregivers -
Got the call this afternoon that my insurance has agreed and my surgery is the day after tomorrow - Thursday. I will appreciate any and all forms of prayers/positive energy. (My radar will be on HIGH!)
This surgery is necessary as a result of my brain surgery last Feb. that was checking for tumor regrowth. Good news was that there was NO tumor regrowth, only radiation necrosis lighting up on the scans. Bad news was that a pinhole leak developed allowing my cerebral/spinal fluid to leak forming a fluid pocked under my scalp at the back on my head. (Medical name for it is Pseudomenengocele.) This is essentially like having a water balloon under your scalp that is slowly filling drop by drop. It is quite full now, but still hidden under my hair.
After meeting with brain/neuro specialists, I have settled on one who uses some newer methods and materials for a better success rate. He also does several of these repairs every month.
So, here I go again, with another 4-day hospital stay as I will also have to have the Lumbar Drain to keep the fluid level in check while the initial healing takes place. Also increases the chances of successful outcome.
My new med onc says she has never seen something like this in her patients. Seems that this problem is seen more in patients with brain tumor primaries. It is mainly a result of the location of the "tumor" (which had been killed by Gamma Knife) they wanted to get out.
__________________
"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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10-10-2006, 06:39 PM
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#2
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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Hi Steph,
I hope your surgery goes well. It sounds like have done your homework and are getting the best care available. You are already in my thoughts and prayers and I will be especially thinking of you on your day of surgery. Best wishes for a speedy recovery.
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10-10-2006, 06:51 PM
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#3
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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sending thoughts and prayers your way and I hope all goes as expected. I wish you a speedy recovery and looks like you found the right specialist to do this. sounds like you are in good hands. I wish you the best.
__________________
~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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10-10-2006, 06:55 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Steph,
Sounds like your did your research and that you'll be in good hands. I'll keep you in my prayers.
__________________
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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10-10-2006, 07:11 PM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Steph, just try to see this 4 day sojurn as a little "bed-and-breakfast" vacation  You'll soon be home toasting your successful recovery with a nice little Merlot(as soon as it's ok'ed by the doc of course).
I'll be sending healing prayers your way.
<3 Lolly |
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10-10-2006, 07:22 PM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Steph
You always take things with such grace and courage, I admire your strength....hope the 4 days will fly by and you will be better than ever when its over...you have my prayers and a big hug.
__________________
"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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10-10-2006, 06:53 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Dear Steph
I know you will soar through this with your positive attitude and winning spirit. I will be thinking of you and praying for you.
Big hugs
Becky
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10-10-2006, 06:54 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: Payson, Arizona
Posts: 96
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Surgery Scheduled
Steph:
You will be in my thoughts and prayers. You have been a leader on this board and someone who has my respect and admiration. I wish you only the best.
Barbara
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10-10-2006, 08:26 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Steph, I will definitely be sending good healing prayers for you on Thursday. Not that anyone ever looks forward to surgery, but you seem relieved to be moving towards resolution of this issue. I pray things go well and you are back to full strength soon.
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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10-10-2006, 08:34 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Dear Stephanie,
I send you positive energy and wishing the best for you. I don't have any doubt that you will be back to normal in no time and we go again for diner and drink one of the best french wine to your "sante".
Much love,
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10-10-2006, 08:40 PM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 290
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Prayers on their way to our Creator for your surgical success and rapid healing. Tom
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10-10-2006, 08:52 PM
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#12
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Hi from San Diego
Hi Stephn: I'm so sorry to hear you're having anothr surgery. I will be praying for you...Please be strong, have faith that everything is going to be ok. You have tons of people behind you, wishing you the best. Please let us know everything about the surgery as soon as you are able. I love to hear from you, anything even one line email. I'd like to know you are ok. Thank you..God Bless.
__________________
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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10-11-2006, 02:58 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Positive thoughts from Australia.
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10-11-2006, 05:38 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Sending sunny vibes and warm thoughts from Florida! I look forward to hearing from you soon!
Maria (MTS)
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10-11-2006, 10:32 AM
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#15
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Senior Member
Join Date: Aug 2006
Location: PA
Posts: 188
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Best of Luck to you on Thursday...Stay Strong
__________________
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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10-11-2006, 11:58 AM
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#16
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Hi Steph: I know you sound so positive on your posting however, knowing you personally I know you will be stressing as time gets closer to surgery. You will be in my prayers and I will be checking this board to see an update as I know you will give us one asap. You have done your homework here and now it is time to lay back and let the doctors do their job. Wishing you well through another hurdle! Its good to get it done and then you can enjoy the Holidays! Sending you a hug. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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10-16-2006, 05:41 PM
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#17
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Senior Member
Join Date: Apr 2006
Location: MS Delta in Clarksdale="Home of the Blues" (near Memphis,TN)by Misssissippi River/levee's highest pt.
Posts: 224
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kat in the delta
I will be thinking and praying for a full recovery and that everything will go smoothly. kat in the delta
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10-16-2006, 08:20 PM
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#18
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Hope they fix you up. Praying all works out. BB
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