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Old 12-29-2007, 03:44 PM   #1
kat in the delta
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Location: MS Delta in Clarksdale="Home of the Blues" (near Memphis,TN)by Misssissippi River/levee's highest pt.
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Thumbs down Kat in the Delta

1. ?= How many of you have had a(some) recurrence of your cancer after your 1st treatments? Add Where and When it came back? Please state your initial stage.

OR

2. ?? How many of you have been cancer FREE for more than 2 yrs.. from ending your treatments?? Add the initial stage.

3. What tests are used to monitor you ???

4. Did you have a GENETIC TEST ? to determine your line of therapy ?


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Old 12-29-2007, 06:16 PM   #2
Mary Jo
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Hello Kat,

I did not have a recurrence.

I was dx Stage 2B June 24, 2005. Surgery July 28, 2005. Chemo ended Nov. 30, 2005. I received 4 dose dense A/C and 4 dose dense Taxol along with herceptin every 3 weeks for one year.

I am currently a 2 year 5 month survivor. That is 2 years and 5 months from my surgery date. I am 2 years and 1 month off of chemo and 1 year 2 months off of herceptin.

My oncologist does no scans. Symptoms warrant tests. I have had a Pet/CT 1 year ago - normal; I had an abdominal CT (ordered by GI Doc) 3 months ago - normal; I had a transvaginal ultra sound and CA125 done by gyn. a few months ago - normal; and a bone scan done this week - normal.

All these above tests were done because of symptoms. All but the Pet/CT which my radiation onc. ordered "just because he likes to do those after rads are finished."

I did not have any genetic testing done to determine treatment for me. I will be meeting with a genetic counselor January 30th but at this point not sure I will be going through with it. It depends on how our consultation goes. The genetic counselor isn't even sure I will be tested for BRCA 1 or 2. She said we'd discuss that at our consultation. She said my surgeon thought there would be "another mutation" I could have. I will not go that route though. BRCA 1 or 2 yes, because that would benefit sis and neices and I still have my ovaries but anything else, I don't think I care to know.

I will be anxious to read the responses to your post as well. Thanks for an interesting one.

Your "sister" on the journey,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

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 12-29-2007, 06:47 PM   #3
Kimberly Lewis
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No recurrance 2yrs 5 months and counting. Started 3a, tested positive brca2 - tested with ca27-29, brain mri's and ct scans every 6 months or so...
Are YOU ok? I see that red thumbs down and wonder what you are mad about?
__________________
Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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Old 12-29-2007, 06:57 PM   #4
Becky
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No recurrence and 3 yrs 4 months out. Diagnosed Stage 2A.

BRCA 1 & 2 negative. Still had ovaries removed for a variety of reasons.

Only have tumor marker 27/29 as monitor every 4 months. See medical oncologist every 4 months, rad oncologist every 6 months, surgeon once a year, gyne once a year, primary care once per year (or if I am sick and need to see a doc - ie : sinusitis etc)
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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"

Last edited by Becky; 12-29-2007 at 07:00 PM..
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Old 12-29-2007, 07:16 PM   #5
Sheila
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Location: Morris, IL
Posts: 3,507
Diagnosed 2002 Stage 1
Recurrence 2003 Stage IV Mets to Lymph nodes.
In treatment since 2003
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"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 12-29-2007, 08:02 PM   #6
Vi Schorpp
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Hi Kat

Like Becky, I was diagnosed stage 2A in April, 2003 with vascular invasion. I decided to have a mastectomy for a variety of reasons and don't regret it. I have not had a recurrence and outside of seeing the oncologist every 3 months, I don't see any other doctors except as needed (besides mammogram and pap test).
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Old 12-29-2007, 09:44 PM   #7
Jean
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I hope most of our members will respond !

Kat,
Very interesting questions, will be eager to see results, will you be doing a chart on this?

2 years and 9 months out from dx. Stage 1
No Recurrance
See onc. every 3 mo. have tumor markers done ca 27/29
Digital Mammogram every 6 mo. and alternate with MRI/or/Dilon every 6 mo.
See breast surgeon once per yr.
Have a chest CT once per year due to follow up on small nodule which has not changed since 4/05
See GYN once per year
See Primary Dr. once per year
No genetic testing
__________________
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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Old 12-30-2007, 01:23 AM   #8
mcgle
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Very simply:

Diagnosed Autumn 2005 - stage 1, grade 2

Surgery, rads and tamoxifen by choice (no chemo or herceptin)

NED on two annual follow-up mammograms

See breast surgeon once a year for a 'poke n' grope'!

No genetic testing (dx postmenopausal), so don't think this is done for us old girls!

Mcgle (UK)
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Old 12-30-2007, 04:08 PM   #9
mslinda
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Very interesting repsonses. Hope more of us respond to this thread.

I will be 3 years NED on 1-5-08. A few scares during this time, but everything worked out o.k. I get whatever test I request. But have graduated to seeing my Onc. every 6 months now. With her standard blood work. I don't get tumor markers done. My Onc. doesn't do them. I will see my breast surgeon in February, and am sure he will start seeing me annually. I get a mamo and MRI alternating every 6 months. The rest is in my signature.

Happy New Year to all.

MsLinda
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05

"Worry looks around. Sorry looks back. Faith looks up."
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Old 12-30-2007, 04:49 PM   #10
suzan w
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NED so far...2 1/2 years from surgery, 1 yr 2 mo since last herceptin. On arimidex for 5 years ( started 1 yr. 2 mo ago). Haave onc visits every 3 months (now every 6 m o) for the first 2 years...no scans, unless I ask for them. Have blood work done every 3 months, including CA 27 29. No genetic tests. Have CA 125 every year
__________________
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 12-30-2007, 06:20 PM   #11
TriciaK
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It is good to see you post, Kat---I have missed seeing you often! This is an interesting thread and I also hope to see final results .Here is my info to add:
*Spring 1985--diagnosed with in situ BC, right breast (age 56)
* bilateral mastectomy because of calcification in left breast
* silicone implants
* October, 1985--My only sibling, age 53, died after fighting BC 7 years
1985-1990: I AM CANCER FREE FOR ALMOST 5 YEARS
*Spring 1990--mets found in T9 and T10 vertebra
5 YEARS OF TAMOXIFEN,BECAME VEGETARIAN, LEARNED
PSYCHONUEROIMMUNOLOGY, SELF-HYPNOSIS.
CANCER FREE ALMOST 15 YEARS !(no treatment, no tests)
*June 30, 2004-heart attack
*July, 2004--CT scan prep for heart surgery reveals her2 cancer in lungs
*6 months navelbine and herceptin with 9 more months just herceptin
Ejection fraction dropped to 30--herceptin stopped
* May, 2006--Triple bypass heart surgery
* December, 2007-- CANCER FREE SINCE 2005
TESTS: CA15, regular blood tests, PET/CT every 6 months
No genetic tests
Hope this is helpful! Hugs, Tricia

Last edited by TriciaK; 12-30-2007 at 06:22 PM.. Reason: spelling
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Old 12-30-2007, 06:27 PM   #12
Ruth
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Posts: 356
Hope this helps!

I am 4 1/2 years out from diagnosis and 3 years and 4 months from the end of my herceptin...no recurrance. I see my Onc. every 6 months with blood markers drawn, no scans other than mammo on remaining breast & breast MRI. I think he will switch me to once a year when I get to the 5 year mark. I was stage 3....

No genetic testing done.

Hugs ~ Ruth
__________________
[/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 12-30-2007, 06:49 PM   #13
bashmaz
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April 2008 I'll be 6 years out!

Diagnosed stage 2 April 2002, lumpectomy, ACx4, Taxolx4, 37 rads. Chose not to do Herception trial. See onc. every 3 months, no tests, no blood work, just questions about how I'm feeling. Annual breast MRI & mammo.

2004 UW vaccine trial.

BRCA 1&2 negative.

Currently in Teach trial for Tykerb - sure I'm on placebo.

So far, so good!

Marianne
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Old 12-30-2007, 08:22 PM   #14
Becca
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Dx'd Oct 98 with Stage IIb--3 mo checkups with yearly mammogram, chest xray, bloodtests. No regular scans unless I complained of something like blurred vision, or backache. Scans were always fine until...

Recurrance over 7 years later in 2005 in abdominal lymph nodes with almost continuous treatment for now over 2 years. Scans now as onco thinks needed.
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Old 12-30-2007, 11:38 PM   #15
Chelee
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Kat, I was DX 12-20-05. Had surgery on 1-3-06 when I was officially DX stage IIIA. I've been cancer free since that time. (Knock wood)

However I finished my chemo trts in June of 06, & my yr of herceptin in March of 07. So techically I will be two years out on 1-3-08....but I'm only 9 months out since I finished herceptin. (

I did not have any genetic testing.

As to tests I get my CA 27-29 & CBC ran every 3 months. I also have other issues going on that require me to have my FSH & estradiol ran every 3 months and some times sooner. I have a CMP ran some where between 4 to 6 months. I have a brain MRI every six months. I also had a PET/CT every six months since first DX. (I only get the PET/CT scans because I request them.)

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 12-31-2007, 08:11 AM   #16
tousled1
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Kat,

My history is in my signature. Since I started Herceptin my oncologist and I have used the HER2 serum test to monitor my progress. Tumor markers have not been reliable for me. When I was first diagnosed tumor marker as 15.3 and it is currently 15.1 and I'm now Stage IV. I have CT scans of the brain and chest every 12 weeks to check progress. Hope this helps. I was only NED for 3 months before I developed METS.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 12-31-2007, 09:31 AM   #17
CPA
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2 yrs NED (everything below with signature)
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Husband to Jill
Diagnosed 10/05, age 39
R Mast 11/05
Stage II N0
Her2+ er/pr+
Revision Mast due to positive margins 12/05
TCH Chemo started 1/06
Finished TC 4/06
Tamoxifen
Finished H 12/29/06
Currently NED
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Old 01-01-2008, 03:38 PM   #18
Paris
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I am still on herceptin so can't weigh in but do have a question. Are there any stats that show recurrance rates of patients that were in the Herceptin clinical trials? Long term, i.e. ten years out from completing treatment, do we know how we are going to be?

Jamie
__________________
Diagnosed 11/06 IDC left breast Stage 1, High Grade w/extensive High Grade DCIS. Right breast extensive hyperplasia w/calcifications.
ER-/PR- HER2+++
Bi-lateral masectomy 12/15/06 w/expanders
SNB Node Negative
Chemo Taxotere, Cytoxan 2/07-4/07
Herceptin Started 5/07
Exchange surgery 6/15/07
Herceptin stopped after 12 rounds due to herceptin induced cardiomyopathy
On heart meds 'til?
Age 40 at diagnosis
Cancer may have been a defining moment but it does not define me!
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Old 01-02-2008, 12:07 AM   #19
AlaskaAngel
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NED 5 years plus

Stage I, 1.6 cm IDC with some DCIS
CAF x 6
Radiation
No Herceptin
ER+, PR+, HER2+++

Over 5 years out. See PCP for annual physical exam and breast check. Get standard mammo annually. Last onc visit at 4 years out, no more planned visits with onc. Saw surgeon at 4 years out. No more planned visits with surgeon.

AlaskaAngel
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Old 01-02-2008, 12:38 AM   #20
jones7676
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Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
Diagnosed Stage IIB Oct 03 Chemo until Early Spring 04. Diagnosed Stage IV Lung and Bone Mets Dec. 05. (So, over 2 years from surgery, but not quite 2 years after chemo). Went about 6 months without treatment after 2nd chemo, and have been undergoing some type of treatment ever since.
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