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05-29-2014, 12:21 PM
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#1
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Senior Member
Join Date: Apr 2014
Posts: 47
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Re: Ten Years Stage 4 … and still A-OK
I celebrate your fantastic news and thank you for sharing it is such an encouragement. Also a slightly belated Happy Birthday, I look forward to wishing you an on time birthday in 2015, hopefully by then I'll be finished primary treatment with my year of Herceptin maitenance. I am just in the middle of neoadjuvant treatment then surgery ? radiation ? reconstruction.
__________________
HX: left breast IDC T1a node negative 1999. Lumpectomy, sentinel node biopsy, radiation therapy, 5 years of Tamoxifen, 1 year of Femara discontinued due to intolerance.
3/21/14 almost 15 years later abnormal mammogram 2 cm right breast mass deep in the breast by the chest wall, mammogram last year was normal. Ultra sound confirmed highly suspicious for malignancy.
3/26/14 needle biopsy proven IDC grade 3, ER+ PR+ Ki67 75%, Her 2 in process.
3/31/14 Consult with Breast Surgeon. Bilateral mastectomy discussed along with referral to plastic surgeon for planned surgery with reconstruction.
4/4/14 Her 2 +. My Oncologist explained that this is a new primary and unlike before in 1999 very aggressive. Surgery put on hold.
BRCA testing done. Results were negative for gene mutation.
4/7/14 PET CT for staging for possible neoadjuvant treatment. Results indicate 1.3 cm tumor and a positive lymph node.
4/9/14 lymph node biopsy. Pathology documented metastasis.
4/14/14 cardiac echo result Ejection Fraction 60%
4/16/14 Port placement
4/17/14 1st chemotherapy treatment
with Herceptin, Perjeta, taxotere and carboplatin.
4/18/14 1st treatment done yesterday with no events whatsoever!
4/23-4/25 Dreaded D hit really hard.
Daily visits to the Oncologists office for hydration and neupogen injections.
4/24/14 Started on Cipro for seriously low WBC count.
4/25/14 Results of blood count at MD office so low (ANC 0.08) I am hospitalized in isolation for neutropenic precautions. One treatment wiped out my immune system!
4/28/14 home recovering. 4/30/14 MD's new plan of treatment: reduced dose weekly taxotere, carboplatin, Herceptin with Perjeta every third week.
5/7/14 Cardiac echo > than 60% and the breast ultra sound showed 2 cm lymph node now only .5 cm. mass in breast is unable to be palpated!! treatment is a go.
5/9/14 Partial 2nd treatment, full dose Herceptin and Perjeta 1/3 dose taxotere and carboplatin.
5/13/14 lab check and fluid infusion.
5/14/14 Appointment with my Oncologist. The lab results are great and the dreaded "D" not as severe as 1st round. Then I mention that my left calf and foot are swollen and painful to the point of limping, could be the drugs but to be safe I had a venous doppler study. I have a clot in my left leg. It wasn't totally occluding the vessel and she really didn't want me in the hospital. Now I will be on Arixtra shots in my tummy till the chemo is complete sometime in August, 2014
5/16/14 continuation of 2nd treatment taxotere carboplatin only.
5/23/14 continuation of 2nd
treatment taxotere, carboplatin only
Amazingly no horrid "D" or nausea!!
5/28/14 visit with the oncologist, great news she can no longer feel a breast mass or the malignant lymph node Yippee!!
5/30/14 started 3rd chemotherapy cycle had full dose Heceptin, Perjeta ans 1/3 dose taxotere and carboplatin.
6/6/14 next dose of taxotere carboplatin for 3rd cycle
6/13/14 last dose taxotere carboplatin 3rd cycle
6/16/14 I am scheduled again for another breast ultrasound to see extent of response to chemotherapy. results will direct continued chemotherapy of directly to surgery!
6/20/14 tentative 4th chemotherapy cycle
"Zumokato Toku" is my Chemo Ninja Cancer Assassin name!
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05-29-2014, 03:05 PM
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#2
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Ten Years Stage 4 … and still A-OK
Dear Kim,
Thank you for sharing the great news. Happy Birthday and many, many more.
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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05-29-2014, 06:47 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Ten Years Stage 4 … and still A-OK
Very few things in life give me as much cheer as a shout out from so many Her2 sisters - thank you all for your kind words and cheerful greetings.
Karen, Becky, Sarah, Ceesun, Ellie F, Adriana, Tricia - I love seeing your names - it is so comforting seeing old friends on this site for many years.
SusanW, KaiM, Bunty, Pamelamary, 4angel, Dianamk, Pray - it seems like you are nipping at my heels and running after NED. Hang in there, you’re doing good!
annettechen - you just keep on shooting’ for the moon, honey. Hold that beautiful baby close - with today’s research progress I feel like 20 years IS within reach!
crb, lizbeth, amy, Michka, Dizzydoo, FLFrost, Adriana - I feel like you are still in the midst of treatment turmoil and yet you still have the grace to share in my own Yahoo moment - true angels, all of you.
love and hugs times 10,
Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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05-31-2014, 09:27 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Ten Years Stage 4 … and still A-OK
Dear Kim,
I remember when I was brand new on the site and read your posts - I was terrified for you and all of us.
But - your strong spirit and calming presence always offered hope and that there was a way to fight.
Wishing you continued NED...
and Happy Birthday.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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06-01-2014, 10:07 AM
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#5
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: Ten Years Stage 4 … and still A-OK
Ahhh Kim,
What a lovely post, and a very happy belated birthday to you. Congratulations on your 10 yr. milestone. I too remember so vividly when I had my 1st recurrence to my liver and the fear really set in. The thought of leaving my family was unbearable. I had already endured the stem cell procedure in 97, so I figured there was no way I'd make it through another chemo, and even if I did, it probably wouldn't prolong my life by much. That was before I had learned about our amazing Herceptin! It has truly been our miracle drug. Thank You DR. Slamon!
So a toast to you dear one, on your wonderful news and a belated birthday hug coming your way!
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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06-01-2014, 08:07 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Ten Years Stage 4 … and still A-OK
Honestly, a glass of wine, chocolate and a web chat with old her2 friends…what could be better?
Jackie, Caya, Sassy, Jean and StephN - It seems like all of you too are hanging in there with NED - NED, my how he gets around - we need to introduce him to a few more members...
StephN - My cancer never showed on a PET scan - CAT scans only. I feel like I have had so much radiation that I should be starting to glow in the dark. I always think of you with special amazement - that you conquered brain mets and have been NED for so long.
And Kim from CA - another of my mentors - It is so good to hear from you. I am wondering how you are - judging by your signature, you are still in treatment? How is the Perjeta working for you? My second opinion doctor at Sloan Kettering seems to love Perjeta; says it is similar to Herceptin and that we can be on it long term. Is it working magic on you?
XOXO
Kim
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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06-01-2014, 08:34 PM
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#7
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: Ten Years Stage 4 … and still A-OK
Congratulations Kim! Yours is a great story and you tell it with such love and hope for all! Here,s to the next 10 years!
__________________
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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