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Old 06-13-2021, 10:47 PM   #1
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SoCalGal's Avatar
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
Smile Hello from Flori

Dropping by to say hello - it's now 14 years that I'm living with her2+MBC. This was my tweet from Friday, and I thought I'd share here, back to my her2 roots!!

In ‘96 was diagnosed w Her2+ BrCa, NO Herceptin. Recurrence in 2002, still no Herceptin. In 2007 MBC & finally Herceptin. In 2019 cns & lepto, dr said 3-6mos.
At 2:00AM today my grandson was born. I am so grateful. Never ever thought I’d live to see this! My heart is bursting<3

Treatment UPDATE: I've been on tucatinib/herceptin/xeloda since October & have been mostly stable. Sending Love & Wishing you all well! xoxo flori

web: www.beingflori.com
twitter: @CANsurvive
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.
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
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
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
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
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 06-14-2021, 12:45 AM   #2
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Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
Re: Hello from Flori

So glad to hear from you, Flori! And congratulations on your grandson - after reading your history, who would have thought you would be here celebrating? An inspiration to us all.
Warm wishes from Oz.... Pam
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 06-14-2021, 02:00 AM   #3
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Join Date: Oct 2013
Posts: 474
Re: Hello from Flori


Great to hear from you. I was wondering what was going on as its beenawhile. Congrats on your grandchild. Mine have disappeared ie they have grown up. One is 20 and the other almost 15. Wow time goes by fast

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Old 06-14-2021, 07:41 AM   #4
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Posts: 46
Re: Hello from Flori

CONGRATULATIONS FLORI!! What wonderful news! And so happy to hear from you! I follow your beingflori website. I love your stories, so meaningful and inspiring. - love laura
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Old 06-14-2021, 08:38 AM   #5
Donna H
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Posts: 307
Re: Hello from Flori

So great to hear from you. Congrats and may you have many more celebrations to come!
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Old 06-16-2021, 08:27 AM   #6
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Posts: 646
Re: Hello from Flori

Flori, I’ve been thinking about you quite a lot lately and am sooo glad you’re doing remarkably well!

Congrats on the grandson and keep on keeping on!
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 06-16-2021, 02:11 PM   #7
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Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
Re: Hello from Flori

Hi Flori,

So wonderful to hear from you! Stable is an amazing, thing, isn't it? Especially when grandchildren come into the picture. Congratulations! May stable be with you for a long, long time.
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 06-17-2021, 05:45 PM   #8
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Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: Hello from Flori

Hey there, Grammy!

Congratulations! I am envious! I do have 4 "Grand-dogs" now, tho. Will have to visit your website, Flori. Glad you are surviving and thriving! You are a Timex Energizer Bunny! You take a lickin' and keep on tickin'. Don't be a stranger.

Smile On!

Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 06-18-2021, 06:20 PM   #9
Margaret Eleanor
Join Date: Apr 2011
Location: Phoenix, AZ
Posts: 18
Re: Hello from Flori


My heart is filled with joy to read that you’ve met your grandbaby!!

May you remain stable until a cure is available…or at least until the next drug to keep you stable is available.

Margaret Eleanor

Since I so rarely post, I also wanted you to know that I’m so grateful for your knowledge and wisdom and your generosity to share it with all of us.
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Old 06-19-2021, 06:46 PM   #10
Join Date: Apr 2021
Posts: 5
Re: Hello from Flori

Thank you for coming back to update .those of us newly diagnosed really appreciate it
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Old 06-21-2021, 09:07 AM   #11
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Join Date: Sep 2005
Posts: 182
Re: Hello from Flori


First, congratulations on the birth of your grandson! Second, thank you so much for posting today it is just the hope I need. After 10 years in remission and 18 years living with MBC I fell off the NED wagon 15 months ago, and can't seem to hop back on.

I blew thru several new therapy lines in the last 8 months and will start ENHERTU in two weeks. Your post gives me hope that it may work for me too. I would be grateful for any words of advise on ENHERTU.

April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets
weekly taxotere,herceptin, xeloda
Sept 2004 NED-3 herceptin, zoladex,aromasin
Dec 2006 recurrence in liver
Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex
NED 16 months added zometa
May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin
July 2008 stable...yeah!
Sept 2008 NED again !!!
Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause.
Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin.
March 2009- oophrectomy added Femara and bi-annual Zometa
May 2009- scans clear but suspect lung nodule
June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew
Aug 2009- NED
Nov 2009-scans again clear YAHOO!
March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo
Nov 2009-Nov 2019 scans clear done every 6 months

Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU.
March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable.
June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin.
Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla
June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake.

July 2021- start ENHERTU
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Old 06-22-2021, 02:58 PM   #12
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Join Date: Oct 2013
Posts: 474
Re: Hello from Flori

The main side effects that have to be watched for with Enhertu are pneumonitis. decreases in left ventricular ejection fraction and neutropenia. anemia and thrombocytopenia. Fatigue is also common and decreased appetite. Report any breathing problems or upper respiratory symptoms to the oncologist. Your blood counts and heart function very probably will be carefully monitored. There can be hair loss but I believe it is not severe as with Taxol and Adriamycin. Diahrrhea is also a possibility as Enhertu contains a topoisomerase inhibitor.

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Old 07-06-2021, 11:28 PM   #13
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Join Date: Dec 2006
Location: Oregon
Posts: 715
Re: Hello from Flori

Flori, Flori, Morning Glory had a grandson and could read a story......
May you be reading nursery rhymes to your little guy soon!
Send good wishes your way,

Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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