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Topic: Looking for Her2 Positive survivor stories

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Nov 3, 2014 06:47AM

Lovemyboysandlabs wrote:

Hello, I was dx in February with Her2+ BC. I went through the chemo, the mastectomy and now in the midst of radiation. I will finish that in December and will be on the Herceptin through March. 

I, like so many BC survivors, have a constant fear of metastisis. I can't shake it. I think what I need is to read stories of those with my type of BC that have survived for years with no recurrence. Please share your stories with those of us that are still in treatment or just finishing that are scared.

Thanks!

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/2/2014 Herceptin (trastuzumab) Chemotherapy 3/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/14/2014 Breast, Lymph nodes
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Nov 3, 2014 09:39AM Bad_At_Usernames wrote:

I'm with you. I usually feel pretty positive about the Her2 thing (since there have been so many advancements in such a short period of time) but lately I've been terrified. I'd love to hear some long term survivor stories!

"...to survive this disease, you had to be an eternal optimist and very aggressive..." -Vince DeVita Dx 12/23/2013, IDC, 6cm+, Stage IIIC, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/16/2014 AC + T (Taxol) Targeted Therapy 3/16/2014 Perjeta (pertuzumab) Targeted Therapy 3/17/2014 Herceptin (trastuzumab) Surgery 7/11/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/28/2014 Breast, Lymph nodes Targeted Therapy 9/22/2014 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 11/17/2014 Zoladex (goserelin) Hormonal Therapy 1/31/2015 Femara (letrozole) Dx 1/7/2016, IDC, Stage IV, metastasized to brain Targeted Therapy 1/15/2016 Verzenio Radiation Therapy 7/27/2016 External: Brain Targeted Therapy 11/15/2016 Tykerb (lapatinib) Dx 3/23/2017, IDC, Stage IV, metastasized to liver Chemotherapy 3/28/2017 Xeloda (capecitabine) Chemotherapy 8/30/2017 Taxotere (docetaxel) Radiation Therapy 2/27/2018 External: Brain
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Nov 3, 2014 11:22AM Lovemyboysandlabs wrote:

I will take any survivor stories for sure, but especially would love to hear from HER2 gals.

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/2/2014 Herceptin (trastuzumab) Chemotherapy 3/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/14/2014 Breast, Lymph nodes
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Nov 3, 2014 01:11PM RebzAmy wrote:

Hi ladies

Diagnosed June 2007 HER2+++   Now 7 years down the line.  Large lump, widespread DCIS as well, lymph node involvement .... still here!

Diagnosed June 2007, IDC, Grade 3, 4-5cm lump, several lymph nodes involved, HER2+++, 4 months of high strength chemo, mastectomy and lymph node removal, radiotherapy & a year of herceptin and recently had preventative surgery to other breast.
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Nov 3, 2014 01:40PM Lovemyboysandlabs wrote:

Thanks RebzAmy! So awesome to hear!!!

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/2/2014 Herceptin (trastuzumab) Chemotherapy 3/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/14/2014 Breast, Lymph nodes
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Nov 3, 2014 01:46PM Trisha-Anne wrote:

I'm four years out and doing well!

You are still undergoing tx and your fears are understandable. In time you'll find you think less and less about it coming back. It does take time though and everyone's different. I felt more comfortable and relaxed at around two years out.

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Nov 4, 2014 01:35PM lkc wrote:

here's my post from May 2014

I am writing this with enormous gratitude that I have reached this 9 Year BC anniversary. I've recently returned from my 6 mos check up, and finally had the nerve to ask my sweet Onc if he thought I would make it back then. He smiled and told me if anyone would, he thought it would be me. You see back then it was a recent development that an additional classification of C was added to the Stage 3 cases.There was only Stage III A. and B then. This meant for me that had I been diagnosed a few years earlier I would of been classified a stage 4 and would not have been a candidate for surgery, or the treatment I received.( My onc was part of the team at MD Anderson that pushed for this additional classification to provide an option of CURE for cases like myself) Anyway, to throw another ratchet in, I was also HER2 positive and when he told me that he looked really disturbed. I was actually happy since I knew I would probably get the newly approved Herceptin and just maybe it would work for me. He told me he had seen HER2 cases(BEFORE Herceptin) to be the worst BC prognosis and did not have any long term data for a case like mine. However, my dear Onc, held out his hand to me and said 'We're going for the Cure for you" I remember telling him then to throw everything he could at me. You see, I had just lost my Mom to Met BC and he was also her Onc. and we all had walked the long road of metastatic dx together.

That was 9 years ago and I am well. Living Large! I don't let a day pass without thanking God for my health and blessings I have in this life. I am blessed to share my life with a wonderful man who stood by me, while some members of my family ran for the hills. I have 2 beautiful girls and healthy happy grandchildren and a new baby boy coming in August! I am blessed to have my faith , and have truly long time dear friends. Upon my return home I went back to my career in research, but it would be Breast Cancer Research this time. How cool is that to be able to do that?! So many new treatments and lots of good outcomes.

Anyway. I am posting this to say hi to my old timer sisters on this board and also to let the newer sisters, know my story. There are lots of us out there.

I wish all a gentle road on a journey no one wants to go on.  

Linda K dx'd May 05 Stage IIIC erpr-, her pos, 12 pos nodes
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Nov 4, 2014 01:38PM rozem wrote:

lkc - awesome story!  thanks for posting!!!!

im 3 years out myself :)

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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Nov 4, 2014 06:09PM Girlstrong wrote:

lkc...your letter brought tears to my eyes. To know what you and your family went through and ultimately archived is nothing short of amazing. Praise God is right! Thank you for sharing.....

Now faith is the confidence in what we hope for and assurance about what we do not see..Hebrews 11:1 Subject in KATHRYN study. Dx 7/17/2013, IDC, 2cm, Stage IIB, Grade 3, ER-/PR-, HER2+ Chemotherapy 7/30/2013 AC Chemotherapy 10/29/2013 Taxotere (docetaxel) Targeted Therapy 10/30/2013 Perjeta (pertuzumab) Targeted Therapy 10/30/2013 Herceptin (trastuzumab) Surgery 1/28/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 3/9/2014 Breast, Lymph nodes Surgery 10/23/2014 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant Surgery 5/13/2015 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo Surgery
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Nov 5, 2014 10:48AM Sassa wrote:

In two weeks it will be 8 years since I was diagnosed.  I had bilateral mastectomies, AC chemo , a year of herceptin, and delayed reconstruction with implants.

I am in excellent health and physical condition.

Hang in there.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Nov 5, 2014 10:50AM Moderators wrote:

Hi All, 

Could we make a collection of these, and add them to the section on Acknowledging our Members?

http://www.breastcancer.org/community/acknowledgin...

Please send us a Private message if that is okay, and a photo of you, or something that represents you. Also, where you live (country, state). 

Thank you!!! 

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 6, 2014 10:15AM Lovemyboysandlabs wrote:

Thank you all so much for posting, it truly helps someone like me who is still in treatment for Her2. I know treatment has come a long way, and I had a complete response to chemo so odds are hopefully in my favor, but the fear still comes when I hear about how bad Her2 used to be. I want this fear to stop!

My sincere gratitude for you ladies sharing and CONGRATS to you survivors! 

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/2/2014 Herceptin (trastuzumab) Chemotherapy 3/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/14/2014 Breast, Lymph nodes
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Nov 6, 2014 11:21AM Moderators wrote:

thanks lkc for your permission to acknowledge your heart-warming story! Please, anyone PM us if you too are interested. 

Warmly, 

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 6, 2014 06:23PM JeninMichigan wrote:

I was diagnosed in 2008 with Stage IV b/c right from the start with mets to my liver, bones and chest nodes.  I did 6 cycles of Taxotere, Carboplatin and Herceptin.    I had a lumpectomy and radiation too.   Halfway through my chemo I had another pet scan which showed all mets have been resolved and I was NED.   I have remained NED since June 2008 and have been on Herceptin every three weeks all this time.   Herceptin has been my miracle drug and made all the difference in my life.   I am a single mom and my two daughters were 12 and 8 when I was diagnosed.  My oldest daughter is in her second year of college now and I am teaching my youngest how to drive.  What a gift!!  I feel fortunate to be HER2 with all the new drugs in development and great drugs on the market.  There is every reason to be optimistic!

Jennifer

Dx 2/22/2008, IDC, 2cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+/PR-, HER2+
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Nov 7, 2014 07:39AM Lovemyboysandlabs wrote:

Wow Jennifer thanks for sharing this! I am so happy you had such a great response! These stories do give me hope, so I can't thank you all enough for sharing. 

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/2/2014 Herceptin (trastuzumab) Chemotherapy 3/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/14/2014 Breast, Lymph nodes
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Nov 7, 2014 01:01PM Youngwithbc wrote:

Thanks for sharing Jen, and congrats.

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Nov 7, 2014 06:55PM - edited Nov 7, 2014 06:58PM by Bad_At_Usernames

Linda and Jen, I'm literally crying reading your stories. Thank you for giving me some hope in a very dark hour. Especially happy to hear from you, Linda as I may well have started out with as many nodes as you had (did neo so I'll never know for sure - not that I want to!)

And I'd be so excited to see a her2 acknowledging our members section!

"...to survive this disease, you had to be an eternal optimist and very aggressive..." -Vince DeVita Dx 12/23/2013, IDC, 6cm+, Stage IIIC, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/16/2014 AC + T (Taxol) Targeted Therapy 3/16/2014 Perjeta (pertuzumab) Targeted Therapy 3/17/2014 Herceptin (trastuzumab) Surgery 7/11/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/28/2014 Breast, Lymph nodes Targeted Therapy 9/22/2014 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 11/17/2014 Zoladex (goserelin) Hormonal Therapy 1/31/2015 Femara (letrozole) Dx 1/7/2016, IDC, Stage IV, metastasized to brain Targeted Therapy 1/15/2016 Verzenio Radiation Therapy 7/27/2016 External: Brain Targeted Therapy 11/15/2016 Tykerb (lapatinib) Dx 3/23/2017, IDC, Stage IV, metastasized to liver Chemotherapy 3/28/2017 Xeloda (capecitabine) Chemotherapy 8/30/2017 Taxotere (docetaxel) Radiation Therapy 2/27/2018 External: Brain
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Nov 7, 2014 07:24PM DianaS wrote:

Thank you for your post Linda K. Was very encouraging to me. I was recently diagnosed 10/23/2014. It has been a whirlwind ever since. I'm really not even sure exactly what my true diagnosis is, other than I am Triple Positive. I am just now wrapping my head around this diagnosis and getting into the researching stage. I am just learning what all is involved. I have had a Chest and Abdominal CAT Scan and test that takes pictures of the heat muscle at work and a MRI of the chest/breast today. I go Monday to have a Portcath put in and start Chemo on Tuesday. It is all a little daunting as I'm sure you already know.

I appreciate you sharing your survival story with us. It definitely helps to learn from those that have gone before. Thank you for your willingness to share your story.


Dx 10/23/2014, IDC, 3cm, Stage II, Grade 2, ER+/PR+, HER2+ Chemotherapy 11/11/2014 Taxotere (docetaxel)
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Nov 7, 2014 07:28PM DianaS wrote:

Wow! What a story Jen. Thank you for sharing. Definitely a different perspective to have on the HER2. The Onc made it sound like not such a good thing. I now see it in a different light because of your story. I wish you all the best and what a wonderful gift for you and your daughters, that you have survived!!!

Thank you again for sharing!! It gives those of just coming into this arena much hope for the future.

Dx 10/23/2014, IDC, 3cm, Stage II, Grade 2, ER+/PR+, HER2+ Chemotherapy 11/11/2014 Taxotere (docetaxel)
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Nov 11, 2014 08:02AM - edited Nov 11, 2014 08:08AM by R27dlsg4

I would think that all of us who have had bc fear a recurrence..  I know that I still do after 10 years of being clear and healthy.  I have an upcoming yearly apt in early Dec and always hold my breath.  I had chemo, radiation and a year of Herceptin.  Thankful especially for the Herceptin.  Hope you continue to do well.  Many of us do!!!  I was also Her//2 pos.

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Nov 11, 2014 11:36AM Moderators wrote:

Dear R27dlsg4, Welcome to our community and thank you for posting your story. It is so helpful to hear from long term survivors. Good luck with your appointment in December. Keep posting. The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 12, 2014 06:48PM dmeyer wrote:

Jeninmichigan

Thank you so much for posting your story, that definitely gives me hope.  I was originally diagnosed in April 2014 at stage 3a, however recently  mets in my spine.  I'm er-, PR+ HER2+ 

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Nov 12, 2014 07:31PM Lilyn wrote:

Hi diagnosed with bilateral breast cancer 6 years ago, one of the three tumours was HER2+. Did the double mastectomy, radiation and chemotherapy and Herceptin. I understand how afraid you feel at the beginning, it is all consuming and the fear is so real about recurrence. All I can say that is the fear will fade as time goes on. Time goes on, life goes on. We just had our eldest daughters wedding this past September and it was just such a day of joy and happiness. When I was diagnosed six years ago I could not see that far in the future but now I will keep looking forward and forward and forward. I will never let the fear of cancer rob me of my joy of life. I will march forward and breath in every wonderful spectacular day and thank god for every new season and every new adventure in my life. You take care and we are here for any questions or support needed at anytime. Hugs to you. Lois

Dx 8/15/2008, IDC, <1cm, Stage I, Grade 2, ER+/PR-, HER2+
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Nov 13, 2014 11:49AM LisaH wrote:

Hi ladies! Just checking in to say hi and let you guys know that there is always hope.

This year marks the beginning of my 13th year! I was diagnosed at age 32 with triple positive IDC.

I didn't have herceptin either, just surgery and chemo then tamoxifen. Herceptin had not been approved for stage 1's at the time.

Stay strong ladies! Keep fighting!

Lisa H. Surgery 11/5/2002 Mastectomy: Left Dx 11/6/2002, IDC, Left, 1cm, Stage IA, Grade 2, 0/11 nodes, ER+/PR+, HER2+ Chemotherapy 12/12/2002 AC Hormonal Therapy 2/13/2003
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Nov 14, 2014 10:57AM Lovemyboysandlabs wrote:

Thank you all so much for sharing your stories. The other thing I struggle with right now is living a healthy lifestyle. There is so much information out there and it is overwhelming. What to eat, what to avoid, makeup that causes cancer, vitamins you should take, etc. Can you all share what you are doing? I have increased my veggie and fruit intake and have started exercising more, but am not ready to go raw vegan. I want to live, but want to live. I enjoy food too much!

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/2/2014 Herceptin (trastuzumab) Chemotherapy 3/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/14/2014 Breast, Lymph nodes
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Nov 15, 2014 04:51PM Anaid wrote:

Hi.... I'm HER2 positive, 6 years after the first DX with triple positive....mastectomy and on tamoxifen 5 years. Was told that my prognosis was good, but recently I have a recurrence involving lymph nodes with PR/ER negative but HER2 positive. path results said it is adenocarcinoma and it's metastatic. Recent Tumour marker and CTC tests are fine, for now, and I'm suggested to go for adjuvant chemo and Herceptin. I have opted to have the Herceptin only, not the chemo. I'm also doing juicing, eat vegan diet, lots of supplements and to boost the immune system I also take LDN (low dose neltrexone), Salvestrol. Life is upside down at the moment, the second time really freaks me out.

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Nov 16, 2014 03:18PM Slainte wrote:

Hi!


I was diagnosed in Aug 2010 her2+ Er/pr neg Stage 2 one positive lymph node. Still going strong ! Just over 4 years cancer free!!


Christine


Dx 8/17/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER-/PR-, HER2+
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Nov 16, 2014 04:32PM marejo wrote:


Hi...I remember being at the beginning of my journey and how afraid of was of recurrence.  Was diagnosed stage 2B.    I had a large tumor.....lymph node involvement....went through mastectomy, chemo, radiation and I am now 9 years out.  Praising God.  Living life to the fullest and try to never take a day for granted.

9 year NED Survivor Dx 6/24/2005, IDC, 4cm, Stage IIB, Grade 3, 1/2 nodes, ER-/PR-, HER2+
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May 30, 2015 04:40AM mama2sedi wrote:

thank you all for sharing your positive stories . I'm still on herceptin till January of next year ang your stories have really inspired me

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Jun 5, 2015 09:16AM lkc wrote:

just over ten years now from a stage IIIC her2 Pos BC; LIVIN LARGE ND GRATEFUL EVERYDAY!!!!!

Linda K dx'd May 05 Stage IIIC erpr-, her pos, 12 pos nodes
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Jun 13, 2015 06:51PM Jill900 wrote:

I am 4 years out today!

Dx 6/13/2011, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 6/22/2011 Herceptin (trastuzumab) Chemotherapy 6/22/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/23/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/27/2012 Breast, Lymph nodes

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