ER/PR negative survivors
 

Hello All - I have a friend that had the only type of breast cancer that I have and she now has mets while still on Herceptin. I am ER/PR negative and HER2 positive (+++). My nuclear grade was 3. I was diagnosed at stage 3b, had chemo first and then a modified radical bilateral mastectomy (thankfully I had a near complete pathologic response) and no positive nodes after chemo. I did have one positive node prior to chemo though. 5 weeks of radiation and then completed my Herceptin in April 2013.

I would like to hear from / talk to / email other ER/PR- and Her2+ survivors.

I know a few women that are triple negative, a few women that are Her2 positive but they are also ER/PR+ and the majority of the women I know are ER/PR+ and Her2 negative.

I would love to hear from any of you that are also ER/PR-.

Christy
christy86m@aol.com

Re: ER/PR negative survivors
 

Hi Christy,
Another ER-PR-Her2 positive girl here. You can see my treatment plan in my signature. I am going on 3 years.
Good luck to you!

Re: ER/PR negative survivors
 

YAY YOU!! Thank you so much for your reply! I am having an unusually crappy few days.

I need to google your vaccine trial. Were you pre menopausal at dx?

Thank you so much for responding to my initial post!! I really needed it :)

Christy

Re: ER/PR negative survivors
 

Hi Christy,

ER/PR neg, HER2 (80% pos as of 1998 -- that's how they categorized you in the Stone Age).

9 cm invasive lobular 4th stage w/2 out of 21 lymph nodes involved from the getgo (1995 -- post menopausal, age 50).

Recurrence in '98, throughout liver. First chance to be eligible for Herceptin. Did 10 yrs of Herceptin! Been off 5 yrs. STABLE.

Sorry you are having a crappy time. Talk to me.

Andi

Re: ER/PR negative survivors
 

Hello -
There are some other "regulars" on this board who also might find your post. I am also in the hormone neg number. Herceptin was my slavation!

Chin up, tummy in, and step forward!

Re: ER/PR negative survivors
 

Christy, post menopause. I am amazed everyday that I am going on 3 years. With 12 lymph nodes positive...I thought I was in real trouble. I would recommend a vaccine trial...my research indicates that there is some real progress happening in the area of immunotherapy. My experience at Mayo has been terrific. Where do you live? It is a 4.5 hour drive from my house. At the very least you will have a top oncologist examine you every month, help other generations of women, and hopefully you will be recieving a cutting edge treatment that will become standard of care in the future.

Re: ER/PR negative survivors
 

Hi Christy, me too in your club. Sorry we have to be members.... Anyway, you'll see from my signature all my treatment, but in a nutshell lumpectomy in 2000, no nodes involved, then spread in November 2007 with lung mets and then liver added in 2010. So 6 years at Stage IV and all stable at moment, and very well.

I've said this many times here, that those of you that have the benefit of getting adjuvant Herceptin from the outset (unlike when I was first diagnosed), I believe will do very well, and it seems to be proven with the results and anecdotes we read here.

Best wishes,
Marie

Re: ER/PR negative survivors
 

Her2+
ER negative
PR negative
BAD mood often, cloaked in sarcasm and dark humor...

TODAY'S my 56th year on earth, am feeling grateful :-)

LOVE this site!!!

Re: ER/PR negative survivors
 

I'm in the ER/PR- Her2 Positive club. Multiple lesions, Pagets of the nipple, and 3 positive nodes. Celebrating 6 years since the discovery of numerous unwanted cells lurking in my breast.

Re: ER/PR negative survivors
 

Triple neg here too and eight years out!!!:)

Re: ER/PR negative survivors
 

Hi Christy, I am in the " club" too. er/pr neg, her 2 positive, with extensive lymph and vascular invasion and 12 positive nodes, premenopausal
I am now " out" 8 years and 5 months and well.

Re: ER/PR negative survivors
 

Me too, ER/PR - Her2 + stage 3a, 9 cm. tumor and close to 8 lymph nodes involved. Near complete response after neoadjuvant chemo and lymph nodes all clear. It will be 4 years this coming January. Like some of the gals said, I would highly recommend a vaccine as well. I received one at MD Anderson in Texas. I traveled many miles and am thankful every single day that I had the opportunity to get it. It is not to say that vaccines are the cure but it is one more thing you could do and they are quite safe. You might want to do a little investigating as I do know that some of the vaccines do not want you to be past 6 months since your last Herceptin. My vaccine was given in tandem with Herceptin but most are after you have completed your 1 year. Take care and we are here, us Her2 positve only girls.

Re: ER/PR negative survivors
 

Thank you all so much for your replies!! I noticed one member mentioned tamoxifen which I thought was only for ER/PR + patients but what do I know. I need to figure out how to add my clinical story to my name tag.

I also read the note the member wrote about maybe needing to start the vaccine within 6 months of being off Herceptin. Ironically I am 2 weeks shy of my last Herceptin. Makes me nervous to read the vaccine helps more of the low Her2 + patients (I am Her2 +++). I am BRCA1 and BRCA2 negative with zero family history. I live in Ohio but I'm currently trying to get approved (insurance) for CancerNext genetic testing.

I also read about the tamoxifen thickening a members uterine lining. I am having that anyway with no tamoxifen - but did have infertility and PCOD - and now hyperplasia so the uterus is going to have to go.

No boobs - no uterus. I will have to start going by Chris instead of Christy.

I have a physically supportive husband and two amazing young boys (5 and 7) but this is a lonely existence.

Thanks again for replying - it has meant the world to me.

Christy aka Chris :)

Re: ER/PR negative survivors
 

Hi Christy,
I discovered the cancer in 2008, stage III. Did double mastectomy refused chemo (very silly of me). Dec 2009 started Taxotere, Herceptin for mets to lungs and bones. After first scans lungs and bones were clear. Did another 4 cycles to complete the 6. NED for a year. Mets returned to a small bone and brain. Did 1 radiation zap for brain met (to this date have had two brain mets - both zapped successfully). Went onto Kadcyla, for two years - remained stable (small bone met). Stopped Kadcyla - didn't like the mounting side effects. Have been off all treatment since August 2013 (last scan shows start of mets to liver) I start Herceptin and Navelbine on Thursday.
Eat healthy (no sugar or dairy) and be positive. We have a disease with lots of drugs in the arsenal. Hang in there, you can do it. By the way, I just got remarried, am mommy to a 7 and 11 year old and I am working at getting my scuba instructors license current. Living life and putting up with this disease as best I can.
Best wishes
Fern

Re: ER/PR negative survivors
 

Hi Christy,
It was me regarding the tamoxifen. Let me clarify. My Breast CA was right side whuch was er pr neg. My Lfet mastectomy was oen prophylactively which revealed atypia and hyperplasia( abnormal cells). The standard of care tx for these abnormal cells is Tamoxifen. So I initially went with that. However, I learned afterward Tamoxifne had no value for me as the Cancer morphology of the Right breast Cancer superceeds tx for " the other incidental finding in the left which was NOT a BC.
Hope that helps!

Re: ER/PR negative survivors
 

Im also hormone negative and her2 positive. Stage IV a month after diagnosis..mets to liver and brain, currently no evidence of disease at 2 years out from diagnosis. I just keep putting one foot in front of the other, trying to live in the moment and not worry about anything that has not happened yet. I started Herceptin right after my surgery and have been on it ever since, and I am also on Tykerb at the moment hoping to keep any potential brain recurrences at bay.
Im certainly happy to meet you, but sorry we have to meet under these kind of circumstances. I will certainly keep you in my prayers...

Re: ER/PR negative survivors
 

I too am in the ranks of hormone negative Her2/neu positive. I just finished chemotherapy and was fitted with my tattoos for radiation, TODAY. I had one positive node with extra capuslar extension. I won't lie, I spend almost as much time scanning the signature files of the battle savvy women on this site as I do reading posts. I'm simply looking for hope and I find it everywhere I look on this board. Love these women who have walked the path before me.

Re: ER/PR negative survivors
 

See signature. Stage 3, ERPR negative, no Herceptin. Wow, 12 years ago!

Debbie

Re: ER/PR negative survivors
 

I hope my responses are getting posted correctly - I am doing this on my phone and I think it would be less confusing if I did this on my PC... But that would mean leaving my beautiful 5 year old who is sleeping so close to me with his hand wrapped around my arm - so I will make this work :)

Linda - thanks for the Tamoxifen clarification!

For those of you that mentioned the Mayo trial - I called yesterday and I am waiting to hear back from the trials nurse. I also ran it by my onc at Dana Farber but haven't heard back yet.

Thank you to those who have responded. I am so sorry we are all meeting under such crappy circumstances but I thank God we are here.

xo
Christy
Christy86m@aol.com

Re: ER/PR negative survivors
 

I am also er/pr neg., her2 pos, dxed stage IIIb 7 1/2 yrs ago. Currently stage IV w lots of treatment but doing very well.
I adore the vision of your 5 yr old sleeping peacefully. Enjoy. I miss those times.
Cathy

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.