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Old 02-16-2008, 04:51 PM   #1
schoolteacher
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First Post

My name is Amelia, schoolteacher. I live in Georgia, and I was diagnosed with breast cancer at the first of December. I am Estrogen Postive 77, Herceptin +++ and Progestron +1. My tumors were 3.8 and larger. I have take two AC treatments and the tumors did not go down any, so my doctor changed me to Taxol and Herceptin. One reason he changed me was he suspects I have cancer nodes starting on the skin of breast. I was wondering if any of you have ever taken estrogem suppression with neoadjuvant therapy. I took examples of some of the chemos some of the women on this site have used to shrink their large tumors and showed them to him and asked if they were a possibility. Two or three women had used texatore, some drug that begins with a c, and herceptin. These women reported that their tumors shrank and some disappeared. When I showed him these treatments, he said they might be trials. Will someone please let me know if they are trials? I have gathered information on using estrogen suppression as neoadjuvant therapy. If any of you have used this please let me know. I have chemo flog really bad this after, so if I made any mistakes in my typing please disregard.
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Old 02-16-2008, 05:21 PM   #2
KellyA
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Hi there!

Hi Amelia,

Although I can't help you regarding the trial information, I wanted to welcome you to this site. I think that you will gain so much knowledge and support from the women here. It truly has been a godsend for me. Where in Georgia are you located? I am in Savannah.

Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 02-16-2008, 05:47 PM   #3
schoolteacher
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I live in Northwest Georgia (Dallas). I teach Severe/Emotional Behavioral Disorder students. Thank you for replying to my message. The night time seems to be the worse part for me.
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Old 02-16-2008, 05:57 PM   #4
goops
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I am sorry - I also cannot help you, but welcome to the site and I hope they will quickly find the right treatment to help you. I had both AC and then Taxol and Herceptin and I can tell you that Taxol is a lot easier on a person than AC.

I also had cancer nodes on the skin of my breast - in my case I had a mastectomy before starting treatment.
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May 2007 - Stage 3A, 12 positive nodes, her2 positive
July 2008 - Stage 4 - Liver Mets

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http://goopsville.myminicity.com/ind/
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Old 02-16-2008, 06:02 PM   #5
sassy
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Schoolteacher,

Welcome to this site. I hope you will find information and support here. The night is usually the time of most worry. At times it is very lonely. Come here anytime.

Like you I am triple positive, however I had a mastectomy prior to treatment. You can see my treatment in my signature. I am still on hormone suppression (Lupron shots) at this time. Please feel free to private message me or ask any questions anytime.

My thoughts and prayers are with you as you embark on this journey.
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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 02-16-2008, 06:15 PM   #6
schoolteacher
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It really scared me Thursday when he told me about the cancer nodes on my breast. Since taking the Taxol and Herceptin the nodes on the skin have gone done some. I hope to have my masectomy soon.
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Old 02-16-2008, 06:16 PM   #7
schoolteacher
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Sassy, did you have the node biopsy done before your masectomy?
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Old 02-16-2008, 08:55 PM   #8
Mary Jo
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Hello Amelia and welcome.........

I'm sorry that I cannot offer any advice in your treatment but did want to say that I was happy you found us and know you will find the women here helpful to you.

So a warm welcome I give you and I ask God to surround you with His peace.

Love to you,

Mary Jo
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"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 02-16-2008, 09:08 PM   #9
sassy
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Teacher,

I responded to your PM. Yes, I had sentinal node biopsy prior to mast which was positive. Extensive DCIS and micro-calcification.
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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 02-17-2008, 01:05 AM   #10
Bill
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Smile

Hi schoolteacher! I'm glad you came to this site. It is an awesome source of information and support. Welcome, Love, Bill
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Old 02-17-2008, 04:12 AM   #11
Joanne S
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Amelia, I think you may be confusing some of the information and the chemo drugs. All of this is probably very overwhelming for you. Perhaps the following will help:


A = Adriamycin (Doxorubicin)

C= Cytoxan (Cyclophosphamide)

AC = both above chemos administered the same day.

T = Taxol (Paclitaxel)

H = Herceptin (Trastuzumab)

Taxanes are a group of drugs that include Paclitaxel (Taxol) & Pocetaxel (Taxotere). They have a unique way of preventing the growth of cancer cells. They affect cell structures in a way that cancer calls cannot grow and divide.

Herceptin (H is part of the common primary breast cancer chemo treatment regimen containing A, C, & T ), is indicated for the adjuvant treatment of patients with HER2-overexpressing, node-positive breast cancer. H is a
<TABLE cellSpacing=0 cellPadding=0 width=571 border=0><TBODY><TR><TD vAlign=top></TD><TD vAlign=top>monoclonal antibody that binds to HER2 (human epidermal growth factor receptor 2), and can kill HER2-positive cancer cells</TD></TR></TBODY></TABLE>

Tamoxifen (Nolvadex) is a medication in pill form that interferes with the activity of estrogen (a hormone). It is used as adjuvant, or additional, therapy following primary treatment for early stage breast cancer.

---------------------------------------------------------------------------

Following are some very good educational sites:

NBCF Beyond the Shock Video:
http://www.nationalbreastcancer.org/...yond-the-shock

NBCF Breast Cancer Library:
http://www.nationalbreastcancer.org/...cancer-library


My best to you! Jo
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 02-17-2008, 04:33 AM   #12
michka
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Hi Amelia! Sorry to welcome you on this site but you will find a lot of information through our shared experience. I cannot tell you what treatment to choose, I can only invite you to read the one I had since I have very close characteristics.
I had neoadjuvant chemotherapy. 3xFEC and then Taxol+Herceptine. It worked but not enough to save my breast. I have small breasts and the surgeon said that with the margins, I would be better off having a mast. and reconstruction. But everyone is different. Most of the times it works well.
I send you all my love and hope some other girls will give you opinions.
Michka.
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 02-17-2008, 06:33 AM   #13
Joan M
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Amelia,

Welcome to the Her2 site, you will receive a lot of support and information here. My case was different from yours, but since you are newly diagnosed, have you considered getting a second opinion?

Is your oncologist with a large medical center? Oncologist at larger centers see a lot more cases and often times have access to more information than a local oncologist.

Frequently, a local oncologist will follow the recommendation of a larger center. So, you would still be able to get treatment locally for convenience.

Best, Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 02-17-2008, 10:10 AM   #14
BonnieR
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As Joan suggests, a second opinion is a good idea. I got 3!!!
We are all very individual in the composition of our cancers and resultant treatments. I received Taxol, Herceptin and Carboplatin ( that may be the drug that begins with "C" you are trying to recall).
Keep the faith.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 02-17-2008, 11:04 AM   #15
Catherine
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shrinking tumors

Hi Amelia,

Welcome to our site. This is the best place to come for support and information. From what I have gleaned from this journey, all of the cancers and all of us are not exactly the same. So a good doctor really has to figure out what is right for your DX.

For me, I was lucky that my mulitfocal tumors shrunk to nothing and my 3 positive nodes shrunk to nothing after ony 2 treatments of Adrimycen and Cytoxen. Read below for my treatment description. My DX is different than yours, so I do not know how this compares. I was not on any trials, just standard proceedure.

You might want to buy Dr. Susan Love's Breast Book it is a great reference tool. Breast Cancer treatment has wonderful results, so I wish you all the best.

Hugs, Catherine
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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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Old 02-17-2008, 12:38 PM   #16
chrisy
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Typical "C" chemo with Taxol/Herceptin

Hi Amelia,

Sorry the AC has not given you great results so far, but the taxanes (taxol and taxotere) are VERY effective against Her2+ breast cancer. I think the "C" that generally goes with Taxol and Herceptin is Carboplatin. I had that and the combination kicked butt.

I'm not ER+ so haven't any direct input on your other question, but I'm sure others can respond on this. I would think you would want to shut that down, too, but maybe taking one step at a time is better.
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Chris in Scotts Valley
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 02-17-2008, 12:48 PM   #17
schoolteacher
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Thanks, Chrissy. One reason I posted was to see if any one had started the hormone suppression during neoadjuvant therapy. I read an article Friday that stated one women in California was only going to take the hormone suppression therapy and not take chemo.

Thanks,
Amelia
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Old 02-18-2008, 07:20 AM   #18
mts
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Not taking chemo... there are several ladies that post regularly that did not take chemo either (because of small tumor or other health issues).
From my understanding, if a tumor is less than 1cm and you have negative nodes, and a high ER+ percentage -then no chemo and yes to Tamoxifen... However, in my humble opinion, being HER2+ changes the equation to the need for something more- like Herceptin.

Then you have people like Suzanne Somers who "control" their bc with diet and supplements... good or bad... we don't know, but she beleives it works for her and at the end of the day its what YOU feel you need, not someone else. I hope your onc is more forthcoming... if he/she needs to question about trials to you, then you need another oncologist !

maria
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Old 02-18-2008, 07:30 AM   #19
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Schoolteacher,

I had neoadjunct chemo and it did shrink my tumor to almost nothing. I had 4 rounds of Adrymycian and Cytoxan followed by 4 rounds of Taxatore. I then had a bialteral mastectomy. As for hormone suppression I can't help you there since I'm hormone negative. When I had my initial biopsy I also had my lymph node biopsed since I had an enlarged one. We knew then that I had lymp node involvement just didn't know how etensive.
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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 02-18-2008, 09:22 AM   #20
basset girl
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Welcome

Hi Schoolteacher, I am also a triple positive and in Georgia. I did not have chemo first. I had my mastectomy and then chemo. The Taxol and Herceptin was so much easier on me than the AC. My onc would not start me on Tamoxifin until I had completed the Taxol. I was on it only a few months though and choose to have my ovaries out so I could go on Arimidex. I also had radiation after the chemo. I hope the Taxol/Herceptin combo works well.

Nancy
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Nancy

Diagnosed 4/06, age 45
IDC, 3.5 cm, 4/7 positive nodes
Stage IIB
Her2++, ER & PR++
Mastectomy, 4 AC, 4 Taxol & Herception for one year
Radiation
Ovaries out 4/07
Currently taking Arimidex and Zometa every 6 months
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