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Old 06-13-2015, 09:11 PM   #1
suzan w
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Talking A decade

Ten years NED. Ten years of living, loving, laughing, crying, traveling, hiking, biking, birdwatching, rock collecting, reading, writing, swimming, skiing, fishing, gardening, teaching, camping, drawing, ...
Thank you, Her2 friends for being here for all the ups and downs...
What a wild ride ...
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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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Old 06-14-2015, 06:41 AM   #2
PinkGirl
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Smile Re: A decade

Congrats Suzan!! I am right behind you ... I'll be ten years old in August. I'm very happy for us.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 06-14-2015, 07:28 AM   #3
Coux92
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Re: A decade

Wow, congrats to you both!!!
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3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
06/09/14-Steriotactic BX left breast calcification-Benign
06/18/2014-completed one year of Herceptin!
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Old 06-14-2015, 08:48 AM   #4
Ceesun
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Thumbs up Re: A decade

Yay! to our ten year gals!! Cathy
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Old 06-14-2015, 09:34 AM   #5
thinkpositive
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Re: A decade

Congrats to both of you! That is a big milestone. Wishing you many more wonderful years.
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 06-14-2015, 09:53 AM   #6
BonnieR
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Re: A decade

I'm gaining on you! Thanks for being here when I showed up, you and Pink Girl and the rest
It's good to stick around and offer hope to the newcomers. And to demonstrate what a game changer Herceptin has been
Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 06-14-2015, 02:26 PM   #7
tricia keegan
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Re: A decade

Huge congrats Suzanne, I'm ten years later this week, seeing my Onc on Wednesday for (hopefully) and all clear Mammo for another year!
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Tricia
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 06-14-2015, 04:14 PM   #8
Mtngrl
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Re: A decade

I'm very happy for you, Suzan. Keep dancing!

Amy
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Old 06-14-2015, 06:01 PM   #9
StephN
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Re: A decade

Dear Suzan,

So very glad you have found a way forward and into the future doing so much enjoyable living.

I am sure Pink is also using her time well.

Stay well and happy.
__________________
"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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Old 06-14-2015, 06:30 PM   #10
LoisLane
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Re: A decade

Love your message and congrats to you! Lois
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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Old 06-15-2015, 05:43 AM   #11
jaykay
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Re: A decade

Wonderful news, congrats!
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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 06-15-2015, 06:00 AM   #12
hestko76
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Re: A decade

Congratulations to all 3 of you! I love success stories!
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Helen
dx 10-31-11
Stage 1 Grade 3 (7mm tumor)
Lumpectomy 11-18-11
Er- Pr- Her2+++
0/5 nodes - no positive lymph nodes
Port installed 1-6-12
6 Rounds TCH
Rad. 33 tx
Last herceptin 12-10-12
Port removed 1-3-13
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Old 06-15-2015, 06:23 AM   #13
Becky
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Re: A decade

Welcome to the ten club. I will soon be 11! I remember you joining and we are all in this together. Keep on living life to the fullest. Huge hug to you.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 06-15-2015, 10:26 AM   #14
forher
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Re: A decade

Wishing all of you many, many more years of celebrations and posts like these! Congrats!
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June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 06-16-2015, 12:58 PM   #15
v-ness
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Re: A decade

congratulations! love reading messages like this. valerie
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8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 06-16-2015, 03:00 PM   #16
caya
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Re: A decade

Great news - A decade is a huge milestone.
I am not too far behind - it will 9 years out for me this October, 2015.

I also like to stick around for the newcomers - Herceptin is def. a game changer -

all the best
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 06-17-2015, 05:35 AM   #17
LaDonna28
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Re: A decade

Congrats to all of you with these NED anniversaries! It is great to know and hear about more people with her2 are getting to stay around a lot longer than not! I am so thankful that they have the drugs available to rid and keep her2 at bay.

I go in for my first 3D mammogram on July 2 since this cancer crap all started. I am staying positive that all will be well, but will admit I have that wiggle worm of worry in the back of my mind. It could be because I originally wanted to do a bi-lateral, but physically wasn't up to it. I know they say that for life expectancy that is about the same, but I never could find stats of reoccurrence for the cancer to show up in my breast again. Then in other info available, it seems like her2 likes to reoccur as metasized cancer when it does rear it's ugly ahead again.

Has anyone ever did a lumpectomy and then out of the blue decided to do the bi-lateral?

Hope you all have a blessed day!
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Steriactic biopsy July 2011 for microcalicificarions - negative
Mammogram 2012, 2013 no change
Mammogram July 8, 2014, more microcalcifications and mass (10mm per radiologist)
Diagnostic Mammogram July 10, 2014
Steriactic Biopsy July 15, 2014
July 21 given diagnosis DCIS and IDC upper, Outer quadrant of right breast
ER Pos >95%. PR Pos 90%, HER-2-neu positive (score +3) Grade 3
Breast surgeon on July 29, 2014 says 2 cm
MRI states only mild to moderate bilateral physiologic background parenchymal enhancement with uptake on intermammary nodes
BRCA tests all negative :)
August 8 port placement. Lung partially collapsed. On oxygen until further notice
August 9, '14 started TCPH therapy with nuelasta shots. 6 cycles @ 3 weeks
5th treatment T and C dosages lowered due to bad neuropathy
6th and last TCPH changed to PH only for Dec 1st
Lumpectomy and node biopsy Dec 2
100% complete response from TCPH neoadjuvent therapy: tumor completely gone-dead cells only. Node completely free of ANY cells. Staged at 0! Margins clear from 4mm-10mm from dead cells.
2 week period following surgery went in for draining of Hematoma that filled surgery void area in breast 3 times
Continued with Herceptin only December 22, 2014 @ 3 weeks until ???
Started radiation Jan. 7, 2015 plan is for 16-20 rads
january 25th 2015 last radiation completed. Stopped at 16 due to Seroma (void in breast is filled with fluid)
January 30 Tamoxifan started
Still on oxygen, tamoxifen side effects kicking my butt. Seeing a gastro dr. due to a lot of stomach issues.
July 2015 - 3D mammogram nervous as all hell - but came back clean!!!! YEAAH
March 2016 - only using oxygen at night! Stomach issues better and trying to wean off the heartburn meds. Am hoping to get reconstructive done Jan 2017.
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Old 06-17-2015, 01:54 PM   #18
Mtngrl
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Re: A decade

I really appreciate all you "veterans" who stick around for the newcomers. It's so good for people to get concrete evidence of hope for the future. You are wonderful examples of how to be supportive in a support group.

All the best,
Amy
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Old 06-20-2015, 11:20 PM   #19
Catherine
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Re: A decade

Yeah, Suzan ! Love all the activities in your busy life ! I, too, am thankful for the support of everyone on our wonderful her2 site.
__________________
Catherine


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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Old 06-21-2015, 07:45 AM   #20
michka
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Re: A decade

Congratulations Suzan! Many more decades to come!
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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