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Old 09-14-2007, 05:40 PM   #1
caya
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Shana Tova - Happy New Year!

Happy New Year to all Jewish BC Sisters. May it be a sweet New Year filled with good health and happiness bestowed upon all the Her2 support group sisters and brothers, of all faiths.

Shana Tova
Caya
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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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Old 09-14-2007, 08:19 PM   #2
SoCalGal
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Shanah Tovah U'm 'Too-kah

A good and sweet year for us all - may we all be inscribed for blessing in the book of life.
Love,
Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 09-14-2007, 11:24 PM   #3
Linda
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Happy New Year to you all. Wishing you all a year of joy and health.
Linda
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Old 09-15-2007, 06:47 AM   #4
Joan S.
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Happy New Year!

L'Shanah Tov,
May this be a year of renewed strength and GOOD HEALTH for all of us! May good hear our prayers and keep our loved ones happy and in good health.
Joan
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Old 09-15-2007, 05:10 PM   #5
Andrea Barnett Budin
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Wink Happy New Year To All!!!!!

Each new day is utterly unique unto itself. Different from yesterday, it will also never return. And *you* will not be exactly as you now are. So let's indulge in the day and reach out to each present moment, so that we may feel more alive than ever before.

With my canser came the awareness that Life is so very much more beautiful than I ever fully realized. Each day is more sacred than I'd imagined. I have so many more blessings than I'd thought. I now embrace my new insight and those I love with all my heart. I have learned to dare to live open to unfathomed possibilities. I call upon God to bring such wondrous miracles to all my Sisters and Brothers on this site who face each new day with extraordinary courage and strength, faith and determination. Their friendship has enriched my life immeasurably. I treasure each one. May we all have a divine new year filled with WOW *Now* moments... and WELLNESS!
Andi
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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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Old 09-15-2007, 05:21 PM   #6
gin-tx
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A very happy and healthy New Year to you and your family with good health and a cure for BC.

ginkott1@aol.com
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Old 09-20-2007, 12:19 PM   #7
rinaina
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L'Shana Tova...may it be inscribed in the book for the new year that we all have good health and much happiness.
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~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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Old 09-20-2007, 03:30 PM   #8
gin-tx
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Dear Caya,

A very healthy and happy New Year to you and your family. This is my second time having BC, first was in 1995, I never expected it to raise it's ugly head but it did in spring of 2006. Am still taking chemo, have had 5 surgeries as port quit functioning, surgeon attempted to install another and was unsuccessful, so had more surgery by a radiation intervention specialist 2 weeks ago, will get chemo tomorrow for first time, am very nervous as I'm not totally healed. But these kind of disappointments are what goes along with the good of trying to recover. Keep in touch.

ginkott1@aol.com
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Old 09-22-2007, 05:43 PM   #9
Soccermom
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Dear Caya,
Thank you for posting this!
To all my Her2 friends 'LShana Tova ! May we all e written in the Book of Life!~

Marcia
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Old 09-22-2007, 08:07 PM   #10
Sandy in Silicon Valley
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count me in! Shana Tova & G'mar Hatima Tova!

Caya -

thanks for starting this thread - it's nice to be counted.

I'll add wishes for Shalom Rav (a great Peace) for the year ahead, and happy Sukkah-building tomorrow, for any of you who observe Sukkot at home. It's my very favorite holiday of the whole year!!! Maybe I'll even change my post photo to one taken of me in my Sukkah a couple of years ago... just for a seasonal change.

(((hibookim)))
Sandy in Silicon Valley
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1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...


"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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Old 09-23-2007, 06:34 AM   #11
Joy
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What a happy and hopeful thread! Wishing all of us a very happy new year (and maybe a few scientific discoveries for us all).
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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