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Old 05-11-2018, 12:04 PM   #1
karen z
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!3 years NED yesterday

This note probably does not seem very long after posting my 12 year anniversary as I was super busy during that time and posted late (retirement, downsizing and selling my home and renting an apartment for a couple of years during my daughter's two gap years working in the legal field).

Towards the end of my last thread I mentioned that my older brother had bought a second home in Italy (it is 300 years old and beautiful but there are several renovation and restoration projects to be done). In any case, my sister-in-law and my brother invited me to Italy in April to see my ancestral village and their new home and for interesting side trips in our region (Puglia) as well as some days in Milan at the end. I was gone from April 4-24. I must admit, I fell in love with the village of my maternal grandparents and coming home was a bit surreal. I am hoping (hoping as I need to save up this time) to go back with them for meetings about the house and more interesting side trips this Fall. I hope I can swing this as I felt so so happy in Italy and learned so much. As always, I am praying that i remain NED and am focused on getting more traveling in during this time of my life. My daughter is applying to law schools this Fall. Do not ask me how, as she was just born yesterday. Best, karen z
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Old 05-12-2018, 04:58 PM   #2
Laurel
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Re: !3 years NED yesterday

Karen,

Gosh, your life sounds exciting! I didn't even know you are Italian! Enjoy your health and this season of your life. You have earned some leisure time!
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Smile On!
Laurel


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

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

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Old 05-13-2018, 06:24 AM   #3
karen z
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Re: !3 years NED yesterday

Thanks for your kind words Laurel. I assure you, my life has not been very exciting ! As a university professor for decades, I mostly worked non-stop- up until the "end" of my career (still doing some writing and reviewing, etc.). I do not expect to pick up any teaching down the road. My life did pick up tremendously when I had my wonderful daughter when I was 43 (and turned 44 the next month). She will be 23 this August (OMG) and she graduated from college last May. She is working in the legal field and studying for the LSAT and will be applying to law schools this Fall. But (you are right) my life was very exciting when I got to visit Italy (I love it) and decided yesterday to definitely try and go back this Fall. I am half Italian (on my mom's side- much of the time we were "housed" in the city where my maternal grandparents were born and where my brother bought his second home). We had some very interesting short side visits to beautiful cities in our region (Puglia) and did spend our last few days in Milan (related to both finding a great place to help with house renovations as well as visiting the design fair going on that week). But, so far my heart is in the village of my ancestors. This Fall (I think it is a go) we will go back to our village for a major religious festival held every September and our "main" side trip (a three hour train or bus ride) will be to Rome (and many meetings with architects and others on the house). So, I would love to stay healthy (I can live with my arthritis) to continue to see my Isabella get older and to finally (finally) get to travel a bit. Take good care and thanks for writing.
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Old 05-14-2018, 10:22 AM   #4
jra40
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Re: !3 years NED yesterday

What a great story on your journey and finding your happy place in Italy! I think the positivity that Italy has brought you will work to help you stay healthy. Congrats and enjoy life to the fullest!

Jessica
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11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 05-14-2018, 10:42 AM   #5
karen z
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Re: !3 years NED yesterday

Many thanks, Jessica, for your lovely note. I am going to try hard to allow myself to enjoy life to the fullest (not easy for me). And Italy is my happy place. I am amazed to look around our city and imagine my grandma and grandpa there at one time. I feel such a strong connection to our town/region. Take good care.
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Old 05-14-2018, 02:06 PM   #6
tricia keegan
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Re: !3 years NED yesterday

Congratulations Karen and I'm so happy for you!
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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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Old 05-14-2018, 04:24 PM   #7
SoCalGal
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Re: !3 years NED yesterday

Wow Karen! There is no better feeling than seeing our children realize their dreams!! She is fortunate to see what it's like as she sees you realizing one of yours, too. Amazing to feel that connection to your grandparents, sometimes when using a pot or pan that belonged to my mom, or grandma, I'll look at my hand on the handle and think, my grandma's hand was here at one time. Our connection to our ancestors can be powerful. Italy is fabulous under just about any circumstance, so ENJOY enjoy ENJOY!!!
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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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4.
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
July 2016 - continue HAP plus Xgeva. Not NED not DEaD.
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 most 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 plus nivolumab. hope they take me.
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Old 05-15-2018, 06:19 AM   #8
karen z
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Re: !3 years NED yesterday

Thank you for you well wishes and very kind note, Tricia.

All the best, Karen
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Old 05-15-2018, 06:29 AM   #9
karen z
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Re: !3 years NED yesterday

Hi SoCalGal,

You are so right. I feel very blessed as my daughter is currently working in a very nice law field job and studying for the LSAT. I will likely explode with amazement as she starts to apply to law schools this fall. Although I know that it is a bit scary to her, she is excited and I feel that with all of her hard work, she will get into a good school (my fingers are crossed). And she was so happy that I could finally visit my grandparents' village and, when we made video calls she commented that I looked so so happy. I think she was very proud (I am not the most adventuresome people in the world and a bit anxious about new things) that I actually went to Italy (I really did it). I know exactly what you mean by your feelings when seeing your hand on a pot or pan that your mom or grandmother also used. It is an incredible feeling and ancestral connections are very strong and go straight to one's heart. And, even after one trip, I also feel the wonder that is Italy. I can not wait (literally) to go back this Fall. Take good care. Karen
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Old 05-18-2018, 04:25 PM   #10
Cathya
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Re: !3 years NED yesterday

Karen;

Oh my what a wonderful adventure to start now at this point in your life. I am so looking forward to hearing all about your future adventures.... and your daughters as well. My very best wishes for a long, happy journey.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 05-19-2018, 08:42 AM   #11
karen z
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Re: !3 years NED yesterday

Cathy,
Thank you for such a lovely note.
It looks like you are going though a lot of known and unknown events (and have). Stay strong and tough and please keep us informed of your results as you get them and how you are tolerating new drugs. Know that I am thinking of you. Karen
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Old 05-31-2018, 03:07 PM   #12
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Re: !3 years NED yesterday

Yea Karen! So good to hear that life is good and happy and exciting!

Much love,

Rhonda
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
13 YEARS NED!
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Old 05-31-2018, 09:36 PM   #13
karen z
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Re: !3 years NED yesterday

Hi Rhonda,
Many thanks for the shout out. I think of you often and our adventures and fun at the River Walk (not to mention Macy's) in San Antonio). I hope you are good and it is wonderful to hear from you. I love your picture!
Love, K
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Old 06-01-2018, 10:02 AM   #14
Laurel
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Re: !3 years NED yesterday

Karen and Sassy (sorry Karen to hijack your thread),


Rhonda! Wow! You look marvelous, Darling! Nice to see your smiling face!
__________________

Smile On!
Laurel


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

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

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Old 06-02-2018, 07:44 AM   #15
karen z
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Re: !3 years NED yesterday

Hi Laurel,

You can ALWAYS "hijack" any of my threads to say how marvelous Sassy looks (she does). And it IS SO GOOD to see her smiling face (although I also wish I could hear some of her funny funny comments on anything and everything). I miss the San Antonio days. Sometimes I think of just trying to go on my own and begging others to ..........just do it !!!
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Old 06-03-2018, 08:39 PM   #16
Melissa
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Re: !3 years NED yesterday

Karen,
Here's to many more adventures in Italy.
So happy for you!
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2018 - 12 years!
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Old 06-04-2018, 09:00 AM   #17
karen z
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Re: !3 years NED yesterday

Thanks so much Melissa. And for you too (wherever you want to go and whatever you want to do). Best, K
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Old 06-06-2018, 02:06 PM   #18
lkc Gumby
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Re: !3 years NED yesterday

Congratulations on your blessed good health all the wonderful happenings in your life! I am right there with you at 13 years and living in love and gratitude.
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 06-07-2018, 06:24 AM   #19
karen z
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Re: !3 years NED yesterday

Thank you so much lkc. Congratulations on your 13 year anniversary and you are SO RIGHT about living in love and gratitude (the only way to live). Take good care. K
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