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07-17-2009, 09:14 AM
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#1
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Heartfelt Thank You
I really just wanted to say thank you to all of you for your support, encouragement and prayers. I can't tell you how much your posts mean to me. I have a wonderful husband, family and friends, but none of them truly understand what its like to have that cancer cloud hanging around day in and day out. My mom passed away from lung cancer just two months after I was diagnosed and I miss her terribly. She would have been holding my hand through this journey ...
so thank you for holding my hand ...
Lisa
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07-17-2009, 10:13 AM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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What a sweet post Lisa. I'm sure you echo the feelings of all of us at her2support. I, too, am blessed with a wonderful supportive husband, family and friends ALTHOUGH as you stated, no one understands unless if you have walked the road yourself.
We appreciate you too dear sister and thank you for your "hand holding" and support as well.
God's Blessings to you,
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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07-17-2009, 11:05 AM
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#3
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Dearest Lisa,
Thank you for holding our hands at the same time. I, too, agree with you that most people cannot understand what this feels like, though they may try. I know your sweet Mother is here holding your hands everyday as you miss her presence. I also lost my mother-in-law, who I was so close to, last year to lung cancer. I still struggle with that as I try to breath deeply and live in the moment.
I appreciate your honesty and hope you never forget that we are here for you 24/7. You are never alone. We love you.
Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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07-17-2009, 08:50 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Hi Lisa, I'm glad you find the support you need here as do I. This is one big Her2 family and as you said noone truly understands...but everyone here "gets it".
Like you I lost my Mother to advance lung cancer just as I was finishing up my treatment. I had her through part of it but I am lost without her now. She was really my only true support other then this board. We will always be here to support you... because you are a big part of this family now.
Hugs,
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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07-17-2009, 09:27 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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i am so glad i've been able to hold your hand on this journey through cancer. you help all of us in return with your presence here. thank you!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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07-18-2009, 12:13 AM
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#6
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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I've been thinking a lot about healing hands...
Over the past 13 years, there have been many pairs of HEALING HANDS in my life; many gifted and loving hands. HANDS THAT HELD MINE, stroked my hair, or wiped my tears.
Healing hands that worked diligently on my body. Removing cells that wouldn’t remove themselves. Taking some body parts and putting them in place of others. HANDS THAT DARED to rearrange what God created.
Some HANDS CLASPED together in prayer with mine. Asking God and the Universe to heal me. HANDS THAT PRAYED for strength, wisdom and courage.
Other hands clapped loudly together. Applauding my small wins. The good news of a scan. Markers finally coming down. HANDS THAT WAVED IN JOY.
HANDS OF SHEER STRENGTH appeared to push me further, to hold me higher and they kept me standing upright and strong.
HANDS THAT REACHED back and pulled me up ahead. Hands of those no longer here on Earth. Whispering hands, gently cushioning my every fall.
LINKED HANDS in a chain of love, hope and support surrounded me. Sometimes the healing hands were as brief as a handshake. A touch on my shoulder or a rub on my back.
HEALING HANDS, clasp one! They surround us all.
__________________
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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07-18-2009, 08:04 AM
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#7
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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you guys are just trying to make me cry now!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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07-18-2009, 05:41 PM
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#8
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Lisa,
Our hands are here to support one another and our hearts always open to love.
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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07-18-2009, 06:24 PM
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#9
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Lisa, my mom passed away from cancer just months before I ever was diagnosed with cancer. So while living, she never knew that 1. any of her daughters would get cancer and 2. that I have her bc gene.
But the funny thing is, intuitively, I have always felt that she has been there right by me, thru thick and thin, making sure that I travelled the course of this disease in the "right" direction, making the best choices.
__________________
*** 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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07-18-2009, 07:28 PM
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#10
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Your Mom is still with you, Lisa, holding your hand, and as you lay down to sleep at night, she slips in and strokes your furrowed brow and watches over you. She is one of your Angels.
__________________
For Nicola
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