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05-29-2008, 10:17 AM
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#1
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Brain MRI and MUGA Good
Hi Gang,
Happy to report that there is still nothing in my brain 3 years after my Gamma Knife, no surprise to those who know me (wait, where did I put my coffee!) All kidding aside, I'm one happy camper to be able to say those words seven years after being stage IV!
Muga seems to be holding steady in the mid to high 50's, never varies much. CA 15-3 is always on the high side, but still in the normal range. It has been hanging in the high 20's forever it seems, so maybe that is normal for me. Her2 Serum was the lowest it's ever been, at 9.1, so I have to have faith in that. Everyday is a gift for sure and I'm not wasting a one of them!
I'm off to go do the mucking out in the barn, and learn more life lessons from my ponies, who only live in the moment and keep me very centered, in a world that seems so out of control at times.
Hugs to all my Her2 family, 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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05-29-2008, 10:42 AM
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#2
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Thanks for sharing...
this GOOD NEWS, Kim. So positive to hear, all these years NED ... amazing.
all the best
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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05-29-2008, 10:58 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Kim
That's really good news. I like your focus on things not necessarily being perfect or normal, but normal for you. And you are so right, being "other" centered does bring out the best in us and helps us find perspective.
You're awesome!
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05-29-2008, 12:17 PM
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#4
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Kim,
You are an inspiration to me.
Amelia
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05-29-2008, 01:17 PM
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#5
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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This is wonderful news. I trust they knocked out all nasty cells in your skull and you won't be troubled any more.
I just had a head scan ordered by my internist due to cognitive problems. I called oncologist and told nurse they'd be getting a copy of my head scan and "I trust there will be nothing in there." Then I gulped and said "except for my brain, of course."
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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05-29-2008, 02:59 PM
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#6
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Oh Kim,
so deeply happy to hear your updated news.
You certainly are a Wonder Women.....admire your
energy and love your good news.
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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05-29-2008, 03:34 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Great news! I always smile when I see you on your horse crossing that stream! I love that you are in the middle of life each and every day! You are an inspiration and a source of hope for us all. Keep that great news coming! 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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05-29-2008, 04:14 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Kim, thank you for sharing your fabulous news! I'm so pleased to year you continue to be empty headed! 
Keep it up, girl!
__________________
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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05-29-2008, 04:20 PM
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#9
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Kim, that is such great news! You keep on trottin'. You are a great source of inspiration to us all. I was thinking about you just last week. I went into a tractor supply place where they sell clothing and trailers and everything you need to be a red-neck, and as Jenny guided me through the store, showing me various trailer hitches and such, I noticed some very nice pink baseball caps with a horseshoe on the front. I thought, "wow, those are nice, I should pick one up for Kim and send it to her", then I flipped it over and found that it was $32.00. "Aaaahh, she's probably already got one" Love ya, Bill
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05-29-2008, 11:06 PM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Kim, That is fantastic news. You truly are an inspiration to me. I am so glad you shared your good news with us. It's posts like yours that bring so much hope to me & I'm sure so many others.
With all the chaos we sometimes have in our lives...I think your secret seems to be your horses & ponies. I wonder what my hubby would say if I got a few and put them out around the pool in the back yard? Hummmmmmmm? I have some work to do.  Way to go Kim....here's to endless years of clean scans ahead of you.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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06-01-2008, 10:46 AM
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#11
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Thanks for all the great replys gang. I'm sorry that I don't post as much as I used to, but when the weather is nice I have to get out there and ride. I'm giving Bailador a little rest today because we went out to Pt. Reyes and had a very long ride yesterday. And a very interesting ride it was (saw our first nude hiker, OMG takes all kinds I guess) I took my camera with me, to get some pictures to post for you, but then I forgot my saddle bags and had nowhere to put the camera! I hate when I do that....
We have an endurance ride coming up in 2 weeks, so we have been doing lots of conditioning. Unfortunately, with the price of diesel over $5 a gallon here, I will only be going to a few rides this summer and they won't be far away.
Wow Bill, I wish we had a Tractor Supply Store in our area. I love schlepping around in those kind of stores, they always have such neat stuff.
And Chelee, you get some horses to put around your pool, I'm sure the neighbors won't mind at all!
I've become so enthused about riding that I talked the nurse practioner in my oncologist's office to come on a trailride with me. (She used to be a 3-day eventer, but hasn't ridden in 18 years) Anyway, she came over to our house to test ride Bailador before our intended trailride and had a wonderful time. We had our trail ride all planned, and then she called a week later and said she was going to have to cancel because she was in extreme pain and still couldn't cross her legs. All I wanted to do was share the joy, but she's in so much pain, I just hope she will still talk to me!
Anyway, call me crazy, but I like the pain. It's a good kind of pain and let's me know I'm still alive ....So if any of you are ever in the area I'd love to share the joy, or pain or whatever!
Kim
__________________
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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