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Topic: Triple Positive and Tamoxifen after 5 years...??

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Apr 15, 2017 03:12PM

melster wrote:

Hi all! I am about to hit my 5 year mark for Tamoxifen. I had Triple Positive Stage 2A, 6 months of chemo, 6 more months of Herceptin as well as a BMX with DIEP. The first week of May will be 5 years of Tamoxifen. (I am now 40 years old..have not had a period since October 2011).

What are you guys doing with regard to staying on it another 5 years or stopping? My doctor is giving me the results of the BCI--Breast Cancer Index test at my June appointment.

I am just looking for feedback from you guys as to what the current trends are with us Triple Positive ladies!
Thanks!

Dx 9/2011, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2+ Chemotherapy 10/3/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Targeted Therapy 10/3/2011 Herceptin (trastuzumab) Surgery 4/8/2012 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 5/3/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 16, 2017 12:05AM rozem wrote:

hi

I was advised to stay on hormone therapy for another 5 -preferably an AI but I had a tough time on it and I would have to stay on zoladex shots as I'm not menopausal yet. So I will stay on tam and move to an AI if these ovaries ever stop working

Curious about your BCI test. Please report back

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Apr 28, 2017 03:01AM - edited Apr 28, 2017 03:02AM by hlya

My friend got HER2 positive, 2 nodes involved. She had been on Tam for 5 years, and her doctor put her on another 5 years but she stopped after taking for a while. It's been 8 years since she was 1st dx, and she's been doing very well.

(She said she felt the medication was doing more harm to her body than benefit.

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May 3, 2017 04:30PM melster wrote:

Rozem---

I called to get my results today as I couldn't wait until June. They said I fall into the "high likelihood of benefit" category and my "BCI Score" was a 7.1. Yay me. Ha! I will discuss with my ONC in June, but looks like it's another 5 years for me.

waaaaaaaaaaaaaaaaaaaaaaaah. Scared

Dx 9/2011, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2+ Chemotherapy 10/3/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Targeted Therapy 10/3/2011 Herceptin (trastuzumab) Surgery 4/8/2012 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 5/3/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 3, 2017 08:40PM rozem wrote:

thank you for reporting back! Interesting for sure. So I guess the ER part of our risk of recurrence is the same as her neg women (in that the risk remain years out and hence the extended hormone therapy benefits)

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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May 11, 2017 01:15AM orange1 wrote:

Based on ATLAS trial results, I am doing an additional 5 years of tamox. I aleady completed my first 5 in 2013. I may go even longer since I don't have significant side effects from tamox. I am post menopausal, so could take an AI, but I don't want to deal with side effects from complete loss of estrogen.

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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May 11, 2017 07:59PM rozem wrote:

orange1 - thank you for posting, I remember you from when I first started posting as you are her2 aswell

thanks for the update has your onc recommended?

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Sep 19, 2017 09:55AM Nunci wrote:

Hi ladies!   I am triple positive and 4 years out in November.  I was 33 when diagnosed. I started tamoxifen July 2014, so just over 3 years.  I have horrible side effects from tamoxifen.  Thinning hair, brain fog, brown patches on face, painful vagina issues (irritated, raw, dry, feel like I have paper cuts), I have to go to OBGYN almost every other month just to see if anything else is wrong - but no it's side effects of tamoxifen.  I had no node, size just slightly below 2 cm tumor, DMX, 6 rounds of chemo, Herceptin for a year.   I'm scared to not take it, but I don't want to take either. I actually made up my mind this past week to stop taking it -   :( 

Dx 11/15/2013, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Dx 11/15/2013, DCIS, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 11/29/2013 Lumpectomy: Left Targeted Therapy 1/9/2014 Herceptin (trastuzumab) Chemotherapy 1/9/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Feb 8, 2018 05:43PM rozem wrote:

hi all

I started this thread last year and lo and behold I am having some issue on tamoxifen in year 6. I had an episode of spotting - I have had uterine thickening almost the entire time on tam but not spotting. I also had a biopsy done and it was negative. I am schedule for a D&C and another biopsy 1st week of march. My days on tam may be numbered ....

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Feb 19, 2019 10:45AM Shanary wrote:

Did

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Sep 7, 2019 11:02PM windgirl wrote:

I posted about this same question couple of weeks ago. My main doctor says to stop it at 5, and that the study that recommends the 10 years was not based on triple positives. Others have said if you don’t have bad side effects, why not continue. I am about 4.5 years in, and am undecided as well.

Dx 7/14/2014, IDC, 3cm, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Targeted Therapy 8/13/2014 Herceptin (trastuzumab) Targeted Therapy 8/13/2014 Perjeta (pertuzumab) Chemotherapy 8/13/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/19/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/28/2015 Breast
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Sep 11, 2019 04:31PM Margun wrote:

WindGirl- I think the type of the hormone pill and how long you have to take it depends on the age of the persons, if she is premenopausal or postmenopausal as well as how much hormon positive she is. I guess their you are postmenopausal perhaps your doc agrees with 5 years only .

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