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Old 09-06-2011, 10:28 PM   #1
Pray
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Any other stage iii er pr positives?

Any other sage III er pr postives out there! My cancer did not show on mammograms so I was further along than we hoped. Just hoping to chat with others with same dx. Hoping and praying to make to 2 years with no recurrance this Nov..
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-06-2011, 11:59 PM   #2
Jackie07
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Re: Any other stage iii er pr positives?

It is indeed rare. On the following thread

http://her2support.org/vbulletin/sho...ighlight=stage

only JennyB (# 37) and flyrzfan (#5) are Stage III and ER+ PR+.
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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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Old 09-07-2011, 12:06 AM   #3
Pray
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Re: Any other stage iii er pr positives?

Hi Jackie, Do you know the reasoning of why it would be so rare?
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-07-2011, 12:36 AM   #4
Pray
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Re: Any other stage iii er pr positives?

Jackie, as far as I can see Flyrzfan is stage 1 and has not posted since Jan. 09?
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-07-2011, 01:12 AM   #5
JennyB
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Re: Any other stage iii er pr positives?

I don't understand why it is so rare I thought it would have been more common than the negs as hormone receptive cancer is more the norm??
Could it be that because it is more the norm less people go searching for more info???
Its scares me a bit that there aren't more replies to this thread??
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 09-07-2011, 06:30 AM   #6
Debbie L.
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Re: Any other stage iii er pr positives?

I don't think it's all that rare. HER2+ cancers are about 1/2 and 1/2 (ER+ and ER-). That's a higher incidence of ER- than in the HER2- population, but does not make triple positive "rare". As for stage III, there are not that many in general, I don't think it has anything to do with ER.

Are you saying you're worried that there aren't more people responding, because you think there WERE lots of them and they are all dead? That doesn't make much sense, all you have to do is look at the many women on this board (both ER+ and -) living long with stage IV disease.

Staging is an old-fashioned way of looking at breast cancer. I've heard it described as a crude method of determining risk, and a very bad method of determining treatment. The more we learn about breast cancer, the more we realize it is SO diverse in behavior and response. That diversity of behavior and response is due to the biology, the characteristics of each individual cancer (and perhaps of the body in which is resides). We have some clues about that now -- clues that tell us much more about what to expect than the old-fashioned staging guidelines do. But we have a lot more to learn before we'll be able to tell any one woman, with any real accuracy, what she can expect to happen.

I remember trying to find stories and studies of people exactly like me, in the early days after diagnosis. I thought that if I could find them, I'd know what would happen. Hah! No one knows what will happen. I think seeking those stories, and that (elusive) certainty is our way of trying to regain the illusion of control -- because a cancer diagnosis takes that right away from us. Life is uncertain and life after a cancer diagnosis, a little more-so. As my 90+ year-old neighbor tells me "get used to it". (I do not mean that harshly, although it certainly sounded so when I first heard it -- I mean it to remind us to try not to get too caught up in fears that prevent us from enjoying our moments, this very day).

Debbie Laxague
__________________
3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective 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's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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Old 09-07-2011, 11:43 AM   #7
Jackie07
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Re: Any other stage iii er pr positives?

The abstract below talks about new prognostic factors recommended (used) by the medical field:

Pol Merkur Lekarski. 2011 Jul;31(181):5-8.
[The practical value of breast cancer molecular classification].

[Article in Polish]
Duda-Szymańska J, Sporny S.
Abstract

Breast cancer is the most common female cancer in the Western World and the leading cause of cancer death among women. It is a clinically heterogeneous clinical entity. Histologically similar tumors may have different prognosis and may respond to therapy differently. It is believed that these divergences in clinical behavior are due to molecular differences between microscopically similarneoplasmas.

Breast cancer is a complex disease of genetic background characterized by accumulation of molecular alterations resulting in an important clinical heterogeneity. Current prognostic factors (including lymph node status, tumor size, histological grade, hormone receptor status, ERBB2 expression and patient age) are insufficient to predict accurately the clinical outcome. Microarray expression profiling classifies breast cancer into five (or six) molecular subtypes: luminal A, luminal B, basal-like, HER2 and normal breast-like (sometime luminal C, too).

The different molecular classes of breast cancer not only have different prognoses but also show distinct sensitivities to preoperative chemotherapy. They have specific clinical profiles, as well (reproductive factors, age and race). It means that new, modified prevention strategy for breast cancer is necessary.
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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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Old 09-07-2011, 06:04 PM   #8
Cathya
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Re: Any other stage iii er pr positives?

Hi;

I am actually not really sure of my stage as I was never told but I guessed 3c....however, it's been six years for me NED (yahoo and touch wood a thousand times). I am her2++ not strongly and would love to have more genetic information on my tumors. I just went off arimidex and actonel this past month (I've never been so hot) and am now seen by my oncologist every six months.....as he still considers me high risk. I keep my eye on all the new research, am grateful tykerb is around now as I agree with Jackie about the genetic complexities of breast cancer and treatments required. Have hope as there are others of us around for long periods of time. Being er/pr+ is a positive in my view as it allows an additional avenue of treatment.

All the best,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 09-07-2011, 08:27 PM   #9
Melissa
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Re: Any other stage iii er pr positives?

Hello,

I think my markers are somewhat like yours. I believe not only cancers are different but also individuals effected by the cancer are all different. I think both determine how the cancer behaves. We are certainly on the cutting edge to finding cures, maintenance etc. At least that's what I believe. Research, Research, Research!

I'm still here and thankful for every moment.
Here's to celebrating many more...........
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2022 - 16 year survivor!
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Old 09-07-2011, 11:03 PM   #10
Rejoyce
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Re: Any other stage iii er pr positives?

I am stage 3B, ER+, PR weak, HER2 +++. I have finished TCH, had a double mastectomy and 33 RADS. My one year of Herceptin will be finished in November. I also am taking Aromasin for 5 years.
I had a CT yesterday and will find out the results next Tuesday.
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Old 09-08-2011, 03:02 PM   #11
tricia keegan
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Re: Any other stage iii er pr positives?

I was triple positve although an earlier stage than mentioned at 2B, but doing fine six years on, is triple positive rare???
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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 09-08-2011, 05:54 PM   #12
Pray
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Re: Any other stage iii er pr positives?

Thank you so much all of my Sisters! Debbie you are just what I neened! Thank you for all of your info., common sense and your opinion is invaluable!
Rejoyce Gods blessings to you on your ct. I will be praying for you.
Jackie your info. is always so informatice and thats why I pm you!

JennyB to my little Sis, Please feel free to pm em or fb me anytime for friendship. I extend to everyone. I may not be the sharpest tool in the box but, I know where I can go for Great info. Right Here!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-08-2011, 07:30 PM   #13
dberg
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Re: Any other stage iii er pr positives?

Rare? I have NEVER heard that before! I was dx in 2004, triple positive, 2/13 nodes+. I got herceptin after chemo and rads because that was when they closed the clinical trial and it became standard of care.
Who knows?? Was the particular clinical trial I did (SWOG 0221) or was it the "late" herceptin that has kept me around? Something is working!
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Old 09-08-2011, 09:22 PM   #14
Pray
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Re: Any other stage iii er pr positives?

Tricia, I think we were talking about stage III triple positve if we were rare. As you can see by Debbie's awsome post were not. I'm very glad you are at 6 anniv. I hope to be there in 4 years!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-08-2011, 09:30 PM   #15
sassy
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Re: Any other stage iii er pr positives?

Pray,

I was a stage III triple positive. 5 of 14 nodes.

I'm going strong 6 1/2 years out. My onc guessed maybe around 8% of all breast cancers were triple positive. So not so rare. But we are "special"! Just like all the other special people on these boards!
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 09-08-2011, 09:37 PM   #16
Pray
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Re: Any other stage iii er pr positives?

Thank you Sassy! I'm so glad I have come to terms with having cancer. I really do think I'm as special as every one on this site!
You are to sweet!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 01-04-2013, 06:03 PM   #17
Pray
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Re: Any other stage iii er pr positives?

Its been a year since these posts and I believe everyone here is still doing well! Amen!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 01-05-2013, 03:45 PM   #18
tricia keegan
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Re: Any other stage iii er pr positives?

Yes indeed pray and its good to know all of us are still doing well
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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 01-05-2013, 03:55 PM   #19
MJo
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Re: Any other stage iii er pr positives?

You can add my dear friend Barb to your list of triple positive Stage III. She was IIIB I believe. Diagnosed in 2005 and still NED.
__________________
MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 01-05-2013, 05:27 PM   #20
europa
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Re: Any other stage iii er pr positives?

Hi, I'm adding to this, Stage IIB triple positive. I plan on being around until February 11th 2061. Don't ask me why that date but I keep having visions of it on my tombstone. I'm 38 now, so I will be an old fart by then.
My oncologist mentioned something to me when I was diagnosed. She said that most HER2+ tumors start out ER+ and as the tumor grows it evolves and uses less and less estrogen and more HER2 (protein). Not sure if this is true or not, but I thought I would throw it out if anyone else has heard this as well.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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