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