Re: ER/PR negative survivors
 

Yep, me too...hormone neg, HER2 +++. Need to update my status but just had my second "every 6 months" mammo which was clear! My next appt is with onco in january. Just moving forward!

Re: ER/PR negative survivors
 

er/pr negative diagnosed 2003...currently on kadcyla Ceesun

Re: ER/PR negative survivors
 

Hello all - I just hung up with Mayo Rochester. Thanks to this site and some of your posts, I am now looking into the Her2 clinical trial (vaccine). I didn't even know one existed.

I don't like that it is phase 1 but I also don't like not really having any other options.

Mayo is sending me some articles & literature and I will talk to the trial nurse later this week.

I am curious for those of you that knew about the study and decided to not do it as much as I am curious about those of you that looked into the study and chose to do it (if you feel like sharing that information).

I can't thank you all enough for replying to my post and reminding me that I am not alone and all we can really do is put one foot in front of the other. I am focusing on the word surrender but that has never been my type A way :)

Thanks again and God bless each one of you!!!
With love,
Christy

Re: ER/PR negative survivors
 

Christy,
As you can see from my signature...I just went through the Mayo trial. I private messaged you my phone number. Call me I will tell you all about my decision and my experience. I did quite a bit of research.

Re: ER/PR negative survivors
 

Hello Christy

I was diagnosed with ER- PR+ HER2+ breast cancer, Stage 2, with a 3.4cm grade 3 IDC tumour and 2.8cm of DCIS in January 2013. No lymph or vascular invasion.

After aggressive treatment (one mastectomy, eight rounds of chemo, 15 rounds of radiation and 18 rounds of Herceptin), I'm doing fine.

No signs of spread (October 2013). It's not inevitable!

Good luck

Catkins

Re: ER/PR negative survivors
 

Hello Christy!

I'm in the ER/PR - Club, too!! So glad you posted this thread...I will finish my Herceptin in April. I try to keep myself informed of what I can...always looking "online"...obviously coming here, ...LOVE THIS PLACE...so much knowledge, wisdom & support...I will see my oncologist very soon and am going to ask the same...clinicals...I want to do ALL I can do...however, I'm learning to LIVE FOR TODAY...Thanking God for Each Day!!

Thanks for the post Christy!!

Re: ER/PR negative survivors
 

Hi, I'm in the club too. So far, so good:)

Re: ER/PR negative survivors
 

I am 8 years out..NED..stage IV, ER/PR- . We all have crappy days and it's always good to know you are not alone and there are people who support you...sherryg

Re: ER/PR negative survivors
 

I do believe crappy days come with memories of the past that plague us or visions of the future that scare us.

So focusing on The Present Moment is key to de-crapping your mind. Concentrate instead, as best you can, and the challenge is quite real, on envisioning yourself as you wish to be.

I AM HEALTHY AND WELL. I WILL SURVIVE. I am certain of it. I KNOW it! I am drawing it to me. Disregard all outward appearances. Refuse to believe in the story you sense is presenting itself to you.

Pains are temporary. A part of the process. A part of healing. You are in a process and in the end, you will be victorious.

FEEL exactly how you would imagine you would feel having achieved your dreams! LIVE -- AS IF what you want ALREADY EXISTS. Because it does! You need to call it to you. LIVE AS THE PERSON YOU WANT TO BE.

Live with joy and serenity. KNOWING what you want is on its way to you.

End of pep talk! I can't help myself.

Sending love, as always,



Andi

Re: ER/PR negative survivors
 

Hello....I am also, er/pr negative and her2 +++ - diagnosed stage 2B - 8 year 4 month survivor. :-)

Re: ER/PR negative survivors
 

My Mom Sheila's signature..

Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin

Sheila passed away 12-10-2012

Re: ER/PR negative survivors
 

Good to see a gathering of the ER/PR negative club. That is me plus Her2 +. See signature below. Chemo first, then surgery, then radiation, then a year of Herceptin. Lucky me I am 7.5 years out and feeling good. Thankful for all the drugs they gave me. Thankful for good doctors, friends, family and the support from this site!

Re: ER/PR negative survivors
 

Add me to the LONG list! ER/PR negative, Her2+++, Grade 3, no nodes ...as below...

9 years out. Life is good.

Re: ER/PR negative survivors
 

I also belong in this club. It has now been over 2 years since I forund the lump in my breast. It was so fast growing, but no one could say how long it had been there. I had one lymph node under my arm measuring 22mm, it popped up during a period of 14 days.. 7 of 13 nodes was cancerous :( I try to live day by day, but it is hard knowing that between 2-3 years is the most likely time to reacure....

Re: ER/PR negative survivors
 

Dx w/4th stage invasive lobular in '95. No Herceptin back then. Couldn't benefit from that.

Recurred in '98.

Supposed to dead by 2003. Had other plans.

Live and love each day.

Re: ER/PR negative survivors
 

You are not alone.

1st Diagnosis (July 2010)
ER/ PR -
Her2 +

2nd Diagnosis (October 2013)
ER/ PR -
Still waiting on pathology report to find out status of Her2

Oct. 28th had modified radical (bilateral) mastectomy so now recuperating.
All nodes clear both times. Size of tumor was 8mm.
I meet with oncologist next week to discuss recommended next steps.

Re: ER/PR negative survivors
 

Hello!
Not sure why I can't turn of the "bold" type. Sorry! I was dx Oct. 17/13 Stage 1a, ER-,PR-, HER2+++ Grade 3. Nov. 15/13 Lumpectomy with SNB. No Node involvement. All margins clear. Scheduled to start chemo Jan. 6/13. Hoping to receive TDM-1 trial for early stage people. Won't know until Dec. 24th if I get the trial or not. Thinking happy thoughts.