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05-09-2008, 11:34 PM
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#21
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Senior Member
Join Date: Apr 2006
Posts: 148
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As far as I know, all is well here, too.
Now two and a half years out, having received neither chemo nor herceptin for my tiny borderline HER2+/ER+/PR+ tumour.
Mcgle (UK)
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05-10-2008, 12:25 PM
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#22
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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I am thinking that if I had had mastectomy, I wouldn't have had the local/regional recurrence (caused by not getting enough margin in 2003) And back then my chemo was FEC - no Herceptin. I'll know Monday how my PET scan last Thursday looks like.
__________________
Jackie07
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
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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05-18-2008, 11:18 AM
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#23
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Senior Member
Join Date: May 2006
Posts: 144
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It seems like many(most?) of the women here who didn't do Herceptin and have no recurrence were ER+ or PR+. I wonder how important that is to not recurring.
Congratulations on your survivorship!
- Anna
__________________
- Anna
Stage I - DX 9/2005 ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis - start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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05-18-2008, 05:29 PM
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#24
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Senior Member
Join Date: May 2006
Posts: 221
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ERPR negative, no herceptin
Just to balance it out, I'll report in as ERPR negative, stage III, no Herceptin, still here without recurrence 7 years later. See signature.
Debbie Laxague
__________________
3/01 ~ Age 49, occult primary announced by large axillary node found by my husband. Multiple CBE's, mammogram, U/S could not find anything in the breast. Axillary node biopsy - pathology said + for "mets above diaphragm, probably breast".
4/01 ~ Bilateral mastectomies (LMRM, R simple) - 1.2cm IDC was found at pathology.
5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP B-31's adjuvant Herceptin trial (no Herceptin): A/C x 4 and Taxol x 4 q3weeks, then rads. Arimidex for two years, stopped after second patholgy opinion.
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05-20-2008, 12:05 PM
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#25
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Member
Join Date: Feb 2006
Location: California
Posts: 13
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I was DX Nov. 2000 at 49 yrs old. 1 1/2 cm. ER+ HER2+ (weakly) Nod. neg. lumpectomy, 2-CMF, 4-AC, 28 rad. 9 months Tamoxifen, 3yrs Arimidex. No Hereceptin (wasn't available) I haven't seen Onc. in 2 yrs. but I am feeling great.
Last edited by BEVIE; 05-20-2008 at 12:06 PM..
Reason: grammer
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05-28-2008, 11:47 AM
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#26
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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I started this thread a year ago, and am still fine! Thank you to all who have replied. You've made me feel less alone on this forum where most seem to have (had) access to Herceptin, Tykerb and several trials.
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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05-28-2008, 11:52 AM
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#27
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Bevie
I'm wondering why you don't see the oncologist? I did not have herceptin as it wasn't available....5 years later so far so good, but I see the onc every 3 months....
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05-28-2008, 11:55 AM
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#28
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Lien
Glad to hear that...I hope you never feel alone in this forum. Many of us did not have access to Herceptin when diagnosed early stage (I was diagnosed 2A 5 years ago). I always felt I was missing something, but I know I can have it as a second line of defense if and when needed. Take care of yourself!
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05-28-2008, 03:43 PM
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#29
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Senior Member
Join Date: Oct 2005
Posts: 476
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Just to re-affirm my NED status. Another year.
I asked my onc last week during the six month check up, whether my understanding of the recurrence rate versus time from first cancer discovery is getting lower after 18 to 24 month. He said that this was considered to be correct in the past. But a recent article showed that there is no reduced recurrence rate. He could not give me a more precise info on where this article is. If any of you happens to know, please post it.
That was a disturbing news for me. Otherwise, all are well.
Ann
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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05-28-2008, 05:25 PM
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#30
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Do NOT think of survivorship as time (ie: 18 months, 4 yrs etc), think of it as the journey of your life. Who cares if we have to wait 20 yrs to be deemed "cured". Are you really willing to wait 20 yrs of worry to think that cancer won't come back? And then what, a different disease condition? Nobody knows recurrence rates because 10 yrs ago there wasn't Aromatase inhibitors, taxanes, AC, dense dose, weekly treatment, TCH, Herceptin, Tykerb, Avastin, Tarceva, Sutent, Pertuzamab, vaccines, Imprexa, Gemzar, etc. So you see, what will it be in 10 yrs from now - 2 yrs from now? And, Herceptin (early) helps - but not everyone needs it to do well - not at all. Get your walking shoes on!
__________________
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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05-29-2008, 02:29 AM
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#31
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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I'm not sure how old this info is, and it seems to come from a pharmaceutical company, but it does address the issue of recurrence:
http://www.lifeabc.org/risk_recurrence.html
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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05-29-2008, 01:03 PM
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#32
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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CLTann,
From what I have read, ER+ bc has a 2% per year risk of recurrence, that is additive each year, i.e., a person surviving 10 years has a 20% chance at that point. The risk of ER+ bc returning never goes away. Evidence from delayed hormone therapy trials and extended therapy trials has been positive to date, showing that hormone therapy can reduce this risk. ER- patients do have a drop off of recurrence after 5 years, which declines until 10 years, when the ER+ and ER- recurrence rates cross. The information was in the last quinquennial meeting results from the Early Breast Cancer Trialist Collaborative Group. This information, however, did NOT address Her2 positivity OR Herceptin - two variables that are very important to the outcome. I would not expect to see those kinds of statistics for quite some time.
Hopeful
Last edited by Hopeful; 05-30-2008 at 06:31 AM..
Reason: clarification
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06-16-2008, 06:08 PM
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#33
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Guest
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Wondering...
Why did you opt not to take the Herceptin?
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06-16-2008, 06:12 PM
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#34
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Guest
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Why...
What is your reason for not wanting the Herceptin?
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06-16-2008, 10:31 PM
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#35
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Senior Member
Join Date: Nov 2006
Posts: 35
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I chose not to take herceptin
because back in early 2002 it was a trial and when I read and researched herceptin I was concerned about the number of people who took herceptin and then had brain mets as their first recurrence site. Also, the heart factor wasn't clearly understood back then, plus I didn't want to continue treatment for a full year after completing my standard chemo - it just seemed like enough is enough!
I'm fine with my decision as I'm now over 6 years out and doing fine. I did the UW vaccine trial in 2004 (which I wouldn't have qualified for if I'd had herceptin) plus I recently completed the tykerb/placebo trial (which I also wouldn't have qualified for if I'd had herceptin) - so it's an individual decision, oh and I'm also er/pr-ve.
Hope this helps
Marianne
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