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Old 08-13-2009, 01:07 PM   #1
norwegian
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Recurrance

Dear friends,-

I think that someone on this board once posted that everyone with HER2 bc will have recurrence. It is not a question about if but a question of when.
Do I remember correctly?

And is it true?

How scaring....
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Norwegian

Diagnosed Dec 06, tumor 1.3cm. 1/10 node. PR/ER-, Her2+, DCIS, Mascetomy right side. FEC100 x4, Taxol x4, 25 Radiations, Herceptin finished in June 08. Lymphedema right arm
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Old 08-13-2009, 01:29 PM   #2
Ruth
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Re: Recurrance

Naaa...don't believe it ! Asked my lovely Onc. if that was true and he said nope.
Hugs ~ Ruth
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[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~

Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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Old 08-13-2009, 01:55 PM   #3
chrisy
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Re: Recurrance

No, that's NOT true!

It's not even true (anymore) that people diagnosed with early stage Her2+ bc have a higher risk of recurrence if they are getting Herceptin...

It is scary, but as you put more cancer-free years behind you, it will get easier! There will even be days you don't think about cancer at all!
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 08-13-2009, 05:30 PM   #4
LoriE
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Re: Recurrance

What?? I've never heard either of those things!
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Diagnosed 07/05, Stage 1
Extensive DCIS, .5 mm invasive
Mast
No nodes.
10/05 4 A/C & 1 yr of Herceptin
06 Proph Mast
Lat Flap Recon - failed on one side, replaced w/expander
NED
HER + 3, ER-, PR-
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Old 08-13-2009, 06:25 PM   #5
Joe
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Re: Recurrance

Here is a study released at the 2008 ASCO Meeting by MD Anderson:


Prognosis of women with stage IV breast cancer by HER2 status and trastuzumab treatment: An institutional based review.

Breast Cancer--Metastatic Breast Cancer

Meeting:
2008 ASCO Annual Meeting

Abstract No:
1018

Citation:
J Clin Oncol 26: 2008 (May 20 suppl; abstr 1018)

Author(s):
S. S. Dawood, B. Kristine, G. N. Hortobagyi, S. H. Giordano
Abstract:
Background: HER2 +ve status is traditionally known to be associated with poor prognosis. Recent studies have shown that the addition of trastuzumab to the treatment of women with HER2 +ve disease significantly improves survival in early and advanced stage breast cancer. The purpose of this retrospective study was to determine if the addition trastuzumab in a cohort of women with stage IV HER2 +ve breast cancer improves prognosis beyond that of women with HER2 -ve disease. Methods: Women with de novo stage IV or recurrent breast cancer diagnosed between 1991-2007, with known HER2 status, who had not received trastuzumab in the adjuvant setting, were identified from the M. D. Anderson database. Disease was classified into three groups: a) HER2 -ve disease, b) HER2 +ve disease without first-line trastuzumab treatment, c) HER2 +ve disease with first-line trastuzumab treatment. Overall survival (OS) was defined as the time from the date of first distant metastasis to the date of death or last follow-up and was estimated using the Kaplan-Meir product method and compared between groups with the log-rank test. Cox proportional hazards were used to determine associations between OS and HER2 status after controlling for patient (pt) characteristics including year and age of diagnosis and site of first metastases. Results: The final analyses included 2,091 pts. One hundred and eighteen (5.6%) pts had HER2 +ve disease without trastuzumab treatment, 191 (9.1%) had HER2 +ve disease and trastuzumab treatment and 1,782 (85.3%) pts had HER-2 -ve disease. Median follow-up was 16.9 months. One year survival in pts with HER2 -ve disease, HER +ve disease who received trastuzumab and those with HER2 +ve disease who did not receive trastuzumab was 75.1% (95% CI 72.9%, 77.2%), 86.6% (95% CI 80.8%, 90.8%) and 70.2% (95% CI 60.3%, 78.1%) respectively. In a multivariable model women with HER2 +ve disease who received trastuzumab had a 44% reduction in the risk of death compared to women with HER2 -ve disease (HR 0.56, 95% CI 0.45-0.69, p<0.0001). Conclusions: The introduction of trastuzumab has altered the natural history of HER2 +ve breast cancer. Our results show that the addition of trastuzumab improves the prognosis of women with HER2 +ve disease above and beyond that of women with HER2 -ve disease.
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Old 08-13-2009, 07:08 PM   #6
Mary Jo
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Re: Recurrance

I just went to see my onc. for my 6 month visit. His exact words to me were .... "you hear of all the women who have recurrences but what you don't hear about are all those who do not. That would be most women."

Stay hopeful.

Mary Jo
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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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Old 08-13-2009, 09:09 PM   #7
suzan w
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Re: Recurrance

my onc agrees, not all Her2 cancers recur!
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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 08-13-2009, 11:56 PM   #8
harrie
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Re: Recurrance

MaryJo, what you just said was interesting. My friend, 43 yrs old, recently dx with stage 2, joined a church and a prayer group. The leader, with all good intentions said something like "we will be with you now until the end". WHAT A THING TO SAY!! But like for many people with minimal experience or knowledge about breast cancer, the assumption is that it is a death sentence.
Because...similar to what you said....people hear about those who died of cancer, but you rarely hear of the multitude that survived it and ended up living a long healthy life.
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*** 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

Last edited by harrie; 08-14-2009 at 12:42 AM..
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Old 08-14-2009, 12:37 AM   #9
Jackie07
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Re: Recurrance

The discussion reminds me of my In-laws' late pastor, Dr. Joe Weldon Bailey. When told by his oncologist about his situation (skin cancer which had started on his nose) being 'terminal', the 80-year-old preacher just laughed and replied: "Everyone's 'terminal'."

For whatever reason - probably because of all the sufferings (nightmares, weight loss, headaches, being called 'lazy' and 'crazy'...) I had had from the huge brain tumor since I was little - I have always felt like whatever time I have in this world is a gift from God (or 'Pure Luck' - love that movie and I am ready to go any time if it is destined to be so.

But I would hate to leave the world in a 'stupid' way such as from misdiagnosis or undergoig inadequate treatment.

I believe we owe it to ourselves and all our significant others to try our best to get rid of as much cancer cells as possible. Our worth is not determined by what we have owned or how long we have lived, but by what (obstacles) we have overcome in our life and how we have lived.

I think it's wise to stay vigilant and guard against 'recurrence' even if the possibility is minute. My doctors had missed my recurrence for four whole years because we all trusted the surgeon (that she had had a 'clean margin') and the radiologist who had read my mammagram (that those were just 'scar tissues'.)

The recurrent rate for Her-2 was especially high in the pre-Herceptin era. It may also has something to do with the trend of 'conservation' surgery in the past 10 + years. Because of its high mitotic rate (fast growing), breast conservation surgeries tend to miss cancer cells that have 'infiltrated' outside of the original cancer site. I happened to be sitting next to a lady in the waiting room of the Ob/Gyn department today and she turned out to be a breast cancer patient -found her recurrence (in the opposite breast)within two years of her first diagnosis. Sure enough, hers is also Her-2 positive.

Caught early, a local [-regional] recurrence is treated as a newly diagnosed breast cancer.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
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Last edited by Jackie07; 08-14-2009 at 01:32 AM..
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Old 08-14-2009, 07:50 AM   #10
Brenda S
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Re: Recurrance

At my first post herceptin follow up I asked my onc about recurrance and he told me that for cases like mine the odds were that cancer will recur in approx 10% of cases. That means that I have a 90% chance of it never recurring.
Brenda
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Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)

Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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Old 08-15-2009, 04:39 PM   #11
tricia keegan
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Re: Recurrance

Phew, I hope not as I've been feeling more and more confident about getting to four years out!!
When will there be any actual real findings of her2+ early stage that had herceptin and their risk of recurrance??? Does anyone know or is it too soon to tell??
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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 08-16-2009, 11:34 AM   #12
norwegian
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Re: Recurrance

I am so grateful for all your kind and comforting answers! It seems to me that in a period (after finishing all treatment and when back in 100% job) I have only been looking at the more pessimistic sides of this journey... Like my thoughts have been tuned into the dark road...

Nevertheless I feel more and more optimistic each time I read your posts.
And I want to thank you all for that!!
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Norwegian

Diagnosed Dec 06, tumor 1.3cm. 1/10 node. PR/ER-, Her2+, DCIS, Mascetomy right side. FEC100 x4, Taxol x4, 25 Radiations, Herceptin finished in June 08. Lymphedema right arm
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Old 08-16-2009, 01:29 PM   #13
Adriana Mangus
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Re: Recurrance

Dear friends;

I do not pay attention to statistics. Neither should you.

Live your life to the fullest, some women will experience a recurrence whether they are Her2+ or Negative.

My oncologist did mention to me,-- and after I read the study done by M.D. Anderson I tend to believe him, is that women with the Her2+ gene, would live longer; thanks to Herceptin. Now, that's a fact.

I thank God every day for Dr. Slamon and his team, without them we wouldn't be here.

With Love,

Adriana
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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

Last edited by Adriana Mangus; 08-16-2009 at 01:39 PM..
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Old 08-17-2009, 10:41 AM   #14
tricia keegan
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Re: Recurrance

I agree Adriana on both counts!
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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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