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11-17-2006, 01:58 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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Just Catching Up
Howdy All,
I haven't posted in awhile, but just wanted to say hi and let everyone know I just celebrated 5 years on Herceptin last month (and 5 years stage IV ). I have to pinch myself to realize how far I've come sometimes and I just felt like sharing my excitement!
I had the most incredible summer doing lots of riding that culminated with my first 50 mile endurance ride in Oct. It was a huge accomplishment for me on many levels. Of course being Breast Cancer Awareness month and my 5yr. anniversary of being stage IV was huge, but it was also important for other reasons as well.
Almost 2 years ago I attended a clinic on natural hoof trimming because I wanted to learn to take care of my horses feet myself. I wanted my horses to be able be barefoot as nature intended, but still wanted to do endurance. Although all of my friends were skeptical in the beginning, after 2 seasons and many, many miles, they are truly impressed. Even the vets are impressed with how good my horses feet look!
And the most challenging aspect of competing this year was my horse Aladdin himself. Aladdin is what you would call a difficult horse, and that's putting it nicely! He is a very insecure, Type A , high strung individual, but is also the sweetest, hardest trying horse I have ever known. Working with him has been one of the biggest challenges of all, but at the same time it has been more rewarding than I can even describe.
So I'm tooting my own horn here, but that is what I've been up to all summer and I still can't even believe it myself!
So, my next big anniversary coming up will be this Feb, as I celebrate being a 10 year survivor.....Whoooo Hoooooooo! Life is Good!
Love 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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11-17-2006, 04:50 AM
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#2
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Senior Member
Join Date: Oct 2006
Location: Chicago
Posts: 36
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Kim,
Congratulations and thanks for sharing your GREAT news with us all! Hearing your story gives us stage IV survivors much hope.
__________________
Michelle
Stage 2 '99, triple negative, 5 nodes involved
mastectomy, AC + T, rads, '01 TRAM flap
Stage 4 '06, lung mets, ER/PR-, HER2++
07/06 - 11/06: Taxol + Herceptin to 'strong partial remission'
11/06: Herceptin every 3 weeks indefinitely
01/07: brain mets, finished WBR, NED in head!
04/07: Xeloda and Tykerb for lung met progression
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11-17-2006, 08:08 AM
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#3
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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This is a wonderful and inspiring story. It sounds like you have made a wonderful life for yourself and your horses. It always amazes me that a 100 pound human can control a 1500 pound animal. I have a question for you. You are doing very athletic things and obviously have a lot of energy while you are taking Herceptin. Did you have an easy time with Herceptin from the start? I will only take Herceptin for a year, but after 8 months of every three week infusions, I feel pretty sick the first week and by the time I feel better it's time to fill me up again. DId your tolerance of Herceptin and your energy level improve gradually or did you find it easy to tolerate from the beginning.
MJO
stage 1
ER/PR+
Her2++
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11-17-2006, 09:06 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Toot that horn loud and clear! I can hear it all the way here in Washington. I loved your horse story! You have sure not let B.C. stand in your way! Inspiration for us all!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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11-17-2006, 09:24 AM
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#5
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Senior Member
Join Date: Mar 2006
Posts: 306
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Kim!
Fantabulous !!!
Thanks for sharing this. Such a huge accomplishment, even for someone in perfectly great health!
Love your ideas on giving Aladdin's feet their freedom! So wonderful to be 'proven right' with these terrific results.
Your prep work all year just goes hand in hand with my congratulations for the event. Amazing!
Do they have 'ritalin' for horses? lol! He is one lucky guy to have you for his mom.
with admiration,
(and some serious envy!)
pattyz
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11-17-2006, 10:16 AM
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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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Dear MJO,
My energy level is someting that I continue to struggle with, but I think it is due more to all the chemo I have had over the years and the effect on my bone marrow. My red counts are always on the low side and occasionally I still need a shot of Aranesp, even though it has been 3 years since I have had any chemo. My doctor and I have discussed stopping Herceptin if my tumor markers were ever to drop to the single digit range and stay there for a long time, but they never do. They are always boucing up and down sometimes going out of the normal range, so we are afraid to mess with a good thing. I would love to be able to stop Herceptin and see if my counts came up, and of course stop the worry of possibly damaging my heart. But things are what they are, so I just stay the course and keep watching for the next great treatment discovery, as we all do.
I'm really sorry that you are struggling with the Herceptin and will be so happy for you when your year is up. Just hang in there, and try to always focus on the things that make you feel good.
Love 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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11-17-2006, 05:48 PM
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#7
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Senior Member
Join Date: Sep 2005
Posts: 312
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Kim love your story about you and your horse. I envy you working with your horse. You have lots of nerve ot take on that challange!
Have you thought of using the Bayer Serum Test to monitor your need for Herceptin? It seems many Stage IVers are?
Hugs,
Janet
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11-17-2006, 09:09 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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Kim,
Great news! When I read stories like yours it gives me inspiration. I am on Herceptin every 3 weeks and having a terrible time with it. The worst thing is the severe bone pain I'm having. It seems that with each infusion my bone pain increases even though all markers are fine and my last PET/CT in October was good. Keep up whatever it is you're doing becasue it sure is working!!
__________________
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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11-17-2006, 10:29 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
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Kim,
i have a horsey question. I have 2 horses now. I got my love of horses back! I have a paint. Her name is Rain. I'm having trouble getting her to go where i want. She is testing me. What do you do when they pull that stuff? Do i be forceful and wipe her, not hard, in the rear? I know you have to show them your boss, but how far do you go? she nevers buck, but she's jumpy. One day she turned and took off like she was out of the gates?! Luckily i was hanging on. When she is with other horses she is perfect. but by herself she's not wanting to go or listen.
__________________
Michele Ulmer
dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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11-22-2006, 03:42 PM
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#10
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Senior Member
Join Date: Jan 2006
Location: Victoria, Australia
Posts: 95
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Congratulations Kim! It is fantastic to hear good news, and someone who is 5 years down the track. It inspires all of us.
__________________
Take care and good luck
Love Lisa
8/03 Age 39 DX 2.5 cm tumor
Invasive Ductal - Grade 3
Stage 2A
er+ Her2neu
No nodal involvement
Lumpectomy, 4 A/C - Radiation
Tamoxifen
7/04 Mets to liver - Her2+
Stop Tamoxifen
Zoladex monthly
Herceptin/Taxol 6 months
Continue Herceptin
2/06 Active again Taxol/Herceptin/Carbo - 6 months
Still active, Heart Problems - NO Herceptin
10/06 Navelbine
4/07 Liver tumours increasing
4/07 Gemzar/Herceptin
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11-23-2006, 06:13 AM
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#11
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Senior Member
Join Date: Oct 2006
Location: Fredericksburg, VA
Posts: 93
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Dear Kim,
Congrats on your 5 year anniversary, and upcoming 10 year, too! It's always great to hear happy news about this! Happy Thanksgiving to everyone!
__________________
Liz
3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
7/10 - start taxotere/carboplatin/herceptin
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11-23-2006, 11:41 AM
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#12
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Member
Join Date: Oct 2006
Posts: 13
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Happy Thanksgiving everyone,
Kim, your post is a great encouragement to all of us. I am Stage IIIB with 7 of 13 positive nodes. Diagnosed in March. Will be done with everything except Herceptin next Tues. YIPEE!! I get so scared about the future sometimes, but hearing from you gives me great hope. And you are right, that we aren't in control and it does no good to worry. Just curious, I have been really achy lately with back pain. I'm having an MRI next Wed. to make sure nothings up. Does anyone think this could be from the Herceptin?? I felt better during chemo than I do now!!... Today, I am thankful for the strength to get through my treatments and for this website full of beautiful people who offer so much encouragement and hope. May God Bless us all.
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11-24-2006, 09:41 AM
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#13
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: Rain
Dear Michelle,
I'm so sorry that Rain is giving you problems, but your husband is probably right. There are too many quiet, what folks call "bombproof" horses out there for you to be struggling with one that could hurt you. Maybe you could have a trainer work with you and Rain together a few times to see what is going on, and determine if she really is the right horse for you. Please keep us posted on the MRI.
Take Care, 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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11-24-2006, 01:24 PM
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#14
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Horse Whisperer?
Dear Kim -
I was really glad to see your posts and learn that you have been staying healthy and following your passion.
Getting outside of ourselves is a big part of healing and getting our minds into territory other than cancer.
Your disease path has run fairly parallel to mine, so that is another reason I am glad to have a good word from you. Some of the other "old timers" at this board do not come back and let us know how they are doing.
Hope the winter weather will permit you to stay outside riding.
__________________
"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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