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08-12-2007, 10:28 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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That's My Excuse (and I'm stickin to it!)
Just wanted you all to know that as I near my sixth anniversary of being on Herceptin that I am still kickin and doing well.
As many of you know, I am rather obcessed with horses and riding and this is the time of year that I am out there riding the trails. I just can't seem to get enough. My poor family knows that when the weather is good Mom is more than likely out on her horse!
I am attaching a photo from an endurance ride I did last weekend in the Santa Cruz mountains. Talk about beautiful, I was pinching myself the whole time! I am so proud of my precious little horse. He just turned 6 and is such a good boy. And knock wood, he has never offered to buck me off!
So, just know that even though I don't post as often as I should, there is not a day goes by that I'm not thinking of my Her2 sisters.
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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08-12-2007, 06:17 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Kim, you always inspire me! What a wonderful picture! I am too old to ride a horse anymore, but they are still beautiful, wonderful animals, and your joy is so contagious! Keep it up and send us photos again. Who knows what wonders riding is doing for you. We all need something joyous and inspiring in our lives to keep us going! Hugs, Tricia
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08-12-2007, 06:20 PM
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#3
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Kim,
What a BEAUTIFUL picture of you and your horse. Absolutely awesome.
YOU GO GIRL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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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08-14-2007, 09:38 AM
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#4
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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You're beautiful, of course, but I must say that horse has a beautiful head.
__________________
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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08-14-2007, 11:10 AM
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#5
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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I Dream Of Horses
I have always adored horses. They are so magnificent, strong and elegant, gentle and rhythmic. I used to dream of riding them on the streets of my neighborhood. I rode in camp as a youngster and it was THE BEST experience ever. I'd tarry at the stables to help feed and care for them. I love rubbing their velvet noses. I'd go around and talk to my horse (of the day), to introduce myself and let him get to know who was climbing on his back. Cantoring and galloping -- there's no grander feeling!
But tell me ?Kim -- about you and Herceptin. You can read my story in my signature. I ache to meet others who are on longterm Herceptin and hear all they have to say about it. PLEASE TELL ALL. I feel alone out here, nearing the end of my 9th year! What a godsend that drug has been for me! I have personally met Dennis Slamon and Mark Pegram -- hugged them tightly and had the opportunity to say to their face -- THANK YOU FOR SAVING MY LIFE. Uttering those words was awesome. We each felt elated, me meeting the discoverer of the Her2 gene and a part of the team that developed Herceptin. They are my saviors. And I am a vision of the fruits of their labors. It was a hugfest to be sure! I feel like a poster child for Herceptin. HOW ABOUT YOU? Please, take a minute to tell all!
Sending loving, happy energy to all my Soul Sisters. Wishing you all STABLE (without the horses  ) / NED!!!!!!! ANDI
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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08-14-2007, 04:02 PM
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#6
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Thank you girls for your sweet words! I do believe with all my heart that the healing energy I receive from my horses , has been instrumental in my recovery. I told my riding instructor one time, that I never felt more alive than when I was on a horse. She agreed that I definitely had a glow when I was riding and that it must be his energy flowing right into me!
I could go on and on...
And Dearest Andi, I don't know what to tell you about Herceptin and me, only that it has saved my life too. I would love to meet Drs. Slamon and Pegram, and someday I will, and I'll give them a big hug too! I am so thankful for each day and I have to say once again how much I appreciate this incredible website that Christine and Joe envisioned.
I have learned to be much more proactive from all the information I have gathered here, and all the timely advice regarding brain MRIs, I am sure, has helped me avoid more problems. I have been NED for 2 years now, but I don't feel confident enough to ever stop taking my Herceptin.
I will probably be on it forever or at least until that wonderful day they find our cure!
I think the hardest thing I struggle with now, and I hope I am not hurting anyone's feelings, but I guess you'd call it Survivor's guilt. We have lost too many precious ladies on this board. I don't know why Herceptin works so well for some and not for all, but I struggle with this alot. It's really hard for me to talk about with anyone so I just thought I'd bring it up because it is just another aspect of my being on Herceptin, something that's always on my mind.
Sending prayers and hugs to each and everyone of you! 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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08-14-2007, 04:38 PM
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#7
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Hello Kim in CA,
Your post was very inspirational for me to read. I loved reading about the healing energy you receive from your beautiful horse. Fantastic!
Harrie (Maryanne)
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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08-14-2007, 08:30 PM
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#8
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Member
Join Date: Sep 2005
Location: Marcus Beach
Sunshine Coast
Queensland
Australia
Posts: 19
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6 years on Herceptin this November!!!
Kym, your story gives me strength and it was great to hear from Andi.
I've been feeling a little alone as well - not knowing any long term Herceptin users! I was originally diagnosed with BC in left breast and 7 nodes in November 1998. Had surgery, 6 months chemo (every side effect known to woman), radiation. Lost a lot of confidence in myself, my usually sharp mind deteriorated and I had the "who would want to employ me blues". I remember, even during chemo, struggling down the hill to the soccer field to kick with my 9 year old son. I soon learned to conserve energy by standing in the goals - he was a pretty good kick but the nets still saved me many a long walk! And then the even bigger struggle up the hill to go home.
I ended up in a soulless job and just a few months after I found the courage to leave it, I had mets to T9, ribs and about 30 spots on my lungs (November 2001). HER+++ER-PR-. I had a few weeks on Herceptin alone and then added taxol. After the 8th week there were no clinical signs of the disease so I stopped the taxol and continued with weekly Herceptin (and 3 weekly Aredia) till August 2005.
Since then I have had both Herceptin and Aredia 3 weekly with only an occasional holiday. Continual low grade mucositis and very cranky for 1-3 days after the infusion but my life is now wonderful. I am fit and healthy - pilates, gym, long beach walks, international folk dancing, lots of laughs!
I love my life but am starting to wonder if I can start to "fiddle" with Herceptin eg what would happen if I had it every 4 weeks instead of 3 or a lower dose or.... are there answers out there? I had 4 weeks between the last 2 doses so I could take some holidays and that 4 th week was sooooo good. I felt even more alive but I wonder if it was all it my mind rather the affect of a drugless week!!
Andi, I hope my reflections help - thanks for leading the way.
Annlyn
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08-14-2007, 10:18 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Thank you for checking in
Dear Kim
You sound good and you look great. How nice of you to check in with us. Herceptin ... and the U of W vaccines... have agreed with you. Finding a place for soulful peace is so important; and you clearly have found it with your beautiful horses. Thank you for reminding and sharing.
Love from your bookend on the other coast,
Kim from CT
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08-15-2007, 02:55 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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More HERs than "2"
Glad to see you doing SO well, Kim!! You plus the horse, of course. There is synergy between the two of you.
Lani has posted articles on drugs that will target the "other HERs."
Remember that there are HER1, HER2, HER3, and HER4. Perhaps more that have not been discovered. The best we can do is take the drug that targets our KNOWN cancer activator. At least it is a drug that many of us can take long term without too much "back talk" from it.
It seems we had an article about a new version of Herceptin that will also target HER1. Or did I dream that one up? As they find out more about the pathologies that Herceptin does not work with (for long term, or at all), researchers are trying to improve it or develop another drug that will have a wider target.
For the reasons that the cancer has other pathways to find and travel, I feel extermely blessed that Herceptin is still the punch I need. I never know when my cancer could get smart and find one of the other pathways to proliferation. Heaven forbid!
__________________
"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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08-15-2007, 03:29 PM
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#11
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Senior Member
Join Date: Oct 2005
Location: southern california
Posts: 287
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Hi there,
I'm so jelous that you are riding! Before my diagnosis I trained endurance horses. I was just getting ready to try my first ride and tie. I don't seem to be able to get up enough stamina to get back out there and ride. Maybe after seeing your picture I can kick myself in the can and get out there. What an inspiration. If you have any tips please let me know!
Alice
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08-15-2007, 03:37 PM
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#12
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Kim you look great and so happy! I truely believe the comfort and sense of well being we get from our animals ahs a positive effect on us,both in mind and body!
Keep livin!!!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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