Topic: Triple Negative Stage IV

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Feb 1, 2013 12:56AM

Posted on: Feb 1, 2013 12:56AM

Renae64 wrote:

This is a way for us to find each other, please add your post so everyone can be found. We can discuss on this thread (hope this works out!)

Dx 4/3/2012, IDC, 3cm, Stage IV, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 4/23/2012 Lumpectomy: Right
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Feb 4, 2013 01:36PM debbiej wrote:

Elisha, it so good to hear from you, I have been wondering how you are doing?  I sure hope this chemo is working for you.  How are you holding up?  I have read your everthesame blog and feel like I know so much about who you are and that is an angel.  You are such an insperation to us all.  You hang in there, everyone is pulling for you to have a full recovery so you can go back to life with your husband and son.  Keep posting, we care! 

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Feb 4, 2013 07:01PM OBXK wrote:

Hello! I was dx at 42 - in 2003 ER+ . it returned in 2010 as TN - found mets last Oct. (liver and chest node) I am about to have my 5th carbo/gemzar. Scans after #3 showed liver mets shrinking.
I am married to a wonderful man and have 2 boys - 13 & 18.

So glad to have a TN group. Easier to compare treatments and share research.

Karen - DX 2003 IDC - LX, TAC X6 - rads 50.4 grays. DX. 12/10 TN - dbl mx , 5 rounds T/C. 10/12 Stage IV - PET/CT mets to chest and liver. 6 of Carbo/Gemar 12/12 CT lesion at L6 and lung nodule. 4/8 - Progression of liver tumors. Starting Xeloda
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Feb 5, 2013 03:22AM Angela-R wrote:


Hello. It sounds like you have been through the ringer. I've never heard of that disease. What a catch 22 for you.

I read in your bio that you are still working full time. That is impressive. I struggle to get the most basic housework done, and I am home nearly every day. Of course that may be a lack of motivation rather than fatigue.

Hello to all you other TN Stage IV ladies. It is good to read posts from people who have had similar treatments and experiences.


Angela Dx 2/7/2009, IDC, 2cm, Stage IIIC, Grade 3, 16/18 nodes, ER-/PR-, HER2- Dx 4/1/2011, IDC, 1cm, Stage IIIC, Grade 3, 21/21 nodes, ER-/PR-, HER2- Dx 4/23/2012, IDC, 5cm, Stage IV, Grade 3, ER-/PR-, HER2-
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Feb 5, 2013 04:32AM LuvRVing wrote:

Hi, I'm adding my voice.  I was diagnosed with Stage 1 in June 2010.  Had a lumpectomy and brachytherapy radiation (Mammosite) then went on Femara as I was "slightly" ER+.  In Marcy 2011 I had a huge recurrence with spread to lymph nodes and it was definitely TN.  Had a BMX with TEs in April then moved to NH to be with family and go to Dana Farber.  I did DD AC/T and got to NED in October 2011.  That was a short-lived relationship as a PET in May showed lung mets along with a few other nodes.  I did Xeloda for two months with no good results, so then I went to Dana Farber in Boston for a clinical trial drug.  Stayed on that until November 5 when brain mets were discovered.  Underwent 10 sessions of whole brain rads and then went on carboplatin on 12/26.  The follow-up brain MRI looks like the brain mets are resolving.  But my CA27.29 has almost doubled and it looks like the carboplatin isn't working at all.   The MO is talking about adding Gemzar, I'm wondering about also changing the carbo to cisplatin or a taxol. 

In any case, I'm leaving for Kauai on Thursday for 11 days. 

Michelle - read my blog at - Be kind to one another! Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2- Dx 3/29/2011, IDC, 4cm, Stage IIIB, Grade 3, 4/21 nodes, ER-/PR-, HER2- Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Feb 5, 2013 04:37AM Renae64 wrote:

I hope your time in Hawaii is wonderful. Thank you for adding yourself to this thread. Huge, Renae

Dx 4/3/2012, IDC, 3cm, Stage IV, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 4/23/2012 Lumpectomy: Right
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Feb 5, 2013 04:39AM Renae64 wrote:

That is funny, I meant to type hugs not huge. I did enjoy K F C tonite!

Dx 4/3/2012, IDC, 3cm, Stage IV, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 4/23/2012 Lumpectomy: Right
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Feb 5, 2013 07:52AM 11tyBillion wrote:

Totally freaking out.  I am 2 months past my 3 year "all clear", with TN IBC, and I will be damned if 3 weeks ago, on a fluke, a chest x-ray picked up something "abnormal" in my lung, which was biopsied a week ago -- and it is BC again.  For the back story of what happened to lead me to have the x-ray, just do a search my my user name for my last posts.  Up until the week after I had that xray and got the "something is wrong news" i had had not one pain or twinge that anything was up. I was still going to the gym, cycling, yoga 2 times a week etc. etc.  It is like a firework suddenly went off on my insides.  

Yesterday I learned mets to liver and lungs.  having PET and CT tomorrow to see jsut where else this has gone.  For 3 years I have gone to the gym 3-4 times a week, kept my fat low, you name it.  I thinkperhapes those life style change salone may have been the things that allowed me to put off recurrence for so long ( as TN tends to come back rather rapidly many times).

My Onc. has been of the "wait and see" background - which I can kind of understand - because a lot of the tests can give you false positives, AND most cannot see things less tham 1 cm.  They watch the bloodwork like a hawk, and any change there would I guess indicate an internal chage.  BUT, with me, all my blood labs have been normal.  I even heard him say yesterday that my blood labs were compltely fine and normal.

sorry.  rambling.  

Port gets put in later this week, chemo starts on Monday.  Onc wants to start with Navelbine.  Any other Stage 4 Tn's out here that can give me some inspiration?  I am beyond depressed, crying every chance I get.  I have two young children, and this all is breaking my heart AGAIN.  originally my littles were 2 and 4 ... now they are turning 6 and 8.  After 3 years, I had really "mended" my previous breaks form the first diagnosis.  Now I feel as though everything has been shattered again.  Every ache and pain I have now (seems like a ton of things have started to "bark" over the past week).  

I have been living on Xanax for the past 2 weeks or so.  Onc. prescribed an antidepressant and I will be gettign it this afternoon.  I was holding off telling my parents until I kknew more bec I did not want to call them up and give them a lot of "i dunno" to thier questions.  Now I have the info, and a plan, I can tell them things more clearly.

can anyone out there offer a hand, as mentally, I feel as though i am falling off a cliff?

dx 11/5/09, age 39, IDC, BRCA+ Dx 11/13/2009, IDC, 2cm, Stage IIB, Grade 3, 1/11 nodes, ER-/PR-, HER2- Dx 2/2013, IDC, Stage IV, ER-/PR-, HER2-
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Feb 5, 2013 10:22AM hydeskate wrote:


Luckily I have an easy job that allows flexibility and is use to having employee's with Stage IV Breast Cancer, when I was dx there was 3 of us me being the baby of the group, sadly I am the one still kicking.

If it wasn't for my sister no house work would get done, she moved back home with the help of one of our cousins.  I have to plan my day out in order to have enough energy to get things done, but I barley made it thru this past fall so I am not sure how much longer I can work full time, it isn't just full-time its 365 days, 7 days a week and can be up to 10+ hours during the athletic season.  Basically my life is sleep, work, doctor appointments, sleep, work, and a little computer time.  If I let myself I can litteraly sleep 14 hours every day but that usually equals more pain from inactivity.

I am actually starting to look at disability since I qualify both with cancer and sjogren's. Chemotherapy 3/7/2008 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/24/2008 Adriamycin (doxorubicin) Surgery 2/11/2009 Lymph node removal: Left; Mastectomy: Left, Right Radiation Therapy 6/30/2009 Breast, Lymph nodes Chemotherapy 8/3/2009 Abraxane (albumin-bound or nab-paclitaxel) Dx IDC, Left, 1cm, Stage IV, metastasized to liver/lungs, Grade 3, 2/20 nodes, mets, ER-/PR-, HER2-
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Feb 5, 2013 10:49AM kskier wrote:

11tybillion - I hope we can talk you down off that cliff.  We have all hung from the ledge and know that panicked, desperate feeling when one is first coping with this news.  Or any news that means change in to the unknown.  We also know the frustration that comes with knowing how well we take care of ourselves - and for what?  It just makes me want to punch something.  Scream.  Cry.  Do what you have to.  Navalbine is doable - I imagine by now you have found the threads here of women who are currently on it.  Once you have the plan in place and a routine you will be able to resume some degree of normalcy.  I too have little ones - age 8 and almost 5.  I first showed signs of BC while pregnant with the baby.  A part of their lives will always be "broken".  They know that their mom is broken, but don't know anything different.  Let us know how things go with the navalbine.  And get to the gym when you can!

Dx 8/15/2008, IBC, 6cm+, Stage IV, mets, ER-/PR-, HER2-
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Feb 5, 2013 11:37AM lotusblossom wrote:


I have been on Navelbine since August 2010.  It has been a very easy chemo and has significantly reduced my mets. I actually feel like life is 'normal' on Navelbine.  Also, my nurses tell me that when it works, it works for a long time. I met one woman wo has been stable on it for 5 years!

My youngest was 5 when I got my diagnosis in 2009.  I was stunned, since I felt fine. 

Since diagnosis, I have continued to be very busy: work, exercise and trying to be the best Mom possible.  My onc calls me the Eveready bunny!  He thinks that my activity is what makes the difference for me.  Since diagnosis, I have had mostly stability or regression (knock on wood).  My onc keeps on telling me to say busy and not stop. So, I think you are right when you say that your exercise and eating well has made a difference. Don't stop!!! We need to put all our chances on our side!!

Good luck with the Navelbine!  I hope it kicks those mets to the curb!

Dx 6/5/2009, Right, <1cm, Stage IV, metastasized to bone/lungs/other, mets, ER-/PR-, HER2-

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