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Is triple negative breast cancer curable?

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sherrmorr View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sherrmorr Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2014 at 7:10pm
Nonna,
 
I just read your post.
 
My sweet mother who is currently N.E.D., fell and broke her hip last 14 June at the age of 78. She laid on the floor for 8 hours until my twin brother came by.
Nonna, if you have to wrap that cell phone around your neck, do not get out of a chair, go to the bathroom with out it.  Lord have mercy, I still cringe when I think of my sweet mom laying there so helpless.
She is fine and is walking on her own, but daggone if she didn't get a mets to the rib, just as she was getting over the hip. Been a rough year.
Please, please be careful.
 
Ina's Daughter
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Post Options Post Options   Thanks (1) Thanks(1)   Quote petersdraggon Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2014 at 10:27pm
Steve, in response to your comment, I would like to report my wife was diagnosed TNBC stage 3b, tumor >5cm, 10 positive nodes, had immediate surgery and completed chemo and radiation in June.  The doctors told her she had a pCR and is NED.  Let's pray it stays that way.  She is back to living her life.  They incorporated carboplatin in the second-round of chemo btw.
Thanks for all you do on behalf of others,
Greg.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2014 at 10:43pm
Thanks for your kind words, Greg. I am sooooooo delighted your wife had a pCR and is NED. May it continue. My daughter celebrated 10 years NED in August.

My apologies to all here because I have not been posting nearly as actively as i used to but my heart is with everyone on this wonderful forum. I have been intensely busy, helping some folks, and it seems that every night I kind of collapse..

love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 8malik Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2014 at 11:32pm
Hi Latoyal,

I have had tnbc 3 times.  My first time I went 10 years, second 4 years and had stage 4 and now stage 4 on a clinical trial and doing really well.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alison4ox1 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2014 at 3:44pm
I was 6 years out and then in August I found a lump in my neck guess what the breast is back treatable but not curable. Thought I was out if the woods having passed 5 years. The only good thing is that it is grade 2 and not spread to any internal organs or bones, the fight begins once again. I have to confess I achieved pcr so cannot understand why.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2014 at 4:13pm
Alison -

Is this considered a new primary or recurrence? Is the lump on the same side of the neck as the breast cancer was and is it a lymph node? What was your initial diagnosis/staging? I'm sorry to hear its back after 6 six years. That really stinks. I am almost at 5 years from diagnosis and I still worry about recurrence regularly. I guess we are never completely out of the woods are we?

Best of luck to you,
Lisas
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alison4ox1 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2014 at 5:18pm
It is classed as a local regional recurrence it is in the supraclavical node and internal mammary node, same side as primary breast cancer. Initial diagnosis 2b, grade 3, 5 cm tumour, 1 positive node, neoadjuvant chemo pcr, skin sparing mastectomy and radiotherapy. Initial chemo FEC and Taxatere.

Edited by Alison4ox1 - Oct 02 2014 at 5:23pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2014 at 5:30pm
Hi Alison,

What treatment are you receiving now? I am assuming more chemo. Is this operable or is chemo the main treatment option? It is a good sign though that it has not spread anywhere else. I know many women who have achieved NED with positive lymph nodes via chemo.

Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alison4ox1 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2014 at 5:44pm
The treatment now is week 1 avastin and taxol, week 2 taxol and week 3 avastin and taxol week 4 no treatment. Tumour marker test at the start of cycle. Ct scan after 12 weeks if all okay carry on with regime for 6 months if still okay will be on maintenance dose of avastin every 3 weeks. Not able to operate because of where the nodes are. I am optimistic, am under one of the best hospitals in the uk the royal marsden and there words to me were they are hoping to give me many years, but the triple negative you never know.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote iluv2sing Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2015 at 9:18pm
Hello All,
I'm one of those NED folks that lost touch with the TNBC forum. Smile
While I have been actively working to educate others on the outside, I've recently felt the need to replenish myself and to return to the forum for my own support and education.  Trying to ensure I keep up with the latest information and attempt to be a source of encouragement to someone else.  While I agree with many who say there is no cure, I am optimistic a cure is not far away.  Until we have targeted therapies I continue to celebrate each year of NED, live my life and continue to educate, empower and encourage others on my journey. 
Raymon
Rejoice Everday!
Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2015 at 10:01pm
Hey Raymond, welcome back! You and I were diagnosed a week apart with very similar stats. I'm still NED too
Donna continues to post all the latest info, she's our blessing posting the news from everywhere. Take a look around, really interesting stuff!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote iluv2sing Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2015 at 6:38am
Hey KellylessSmile  Thanks for welcoming me back.  Will do my best to keep up this time.  I lost my old account from 2009 and almost couldn't get back into this one.  Won't happen again.
Raymon
Rejoice Everday!
Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2015 at 11:31am
I've come and gone over the years.  Life gets in the way and I forget about for a months.  I have email notifications on for threads I've responded in, usually a new post on one of those reminds me to come check in :) I truly got the most useful info from ladies I met here that were ahead of me in treatment back when I was sick - I will always be eternally grateful. I try and pay it forward!  And I get the latest TNBC news here as well. 

My autocorrect keeps giving you a D on the end of your name - so sorry Raymon!
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote iluv2sing Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2015 at 1:46pm
Smile  Yeah ... when I first joined I was very active on the site, then my focus went into Facebook groups and face-to-face interactions.  I try to keep on top of the news as it relates to TNBC.  And I too try to give back ... don't worry about the 'D' ... LOL

Raymon
Rejoice Everday!
Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA-
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Post Options Post Options   Thanks (2) Thanks(2)   Quote Lardbrick Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2015 at 11:51am
After reading from the beginning of this thread, I understand why there is such diverse opinions. Some are talking about their experience with stage I, II or even III, while others are deep in stage IV - two totally different worlds when discussing prognosis, hope, and cure.

This is why some forums separate the two populations. You have the Stage I's who have never had a recurrence trying to give hope to the Stage IV's who have been to Hell and back with metastatic disease. Until you have been diagnosed with metastasis to the liver, bones, lungs, or brain, be careful about spreading sunshine and daisies.

While there are honeymoon periods in Stage IV, when the chemo is responsive in kicking butt and they are NED, these people live from scan to scan every six months, not waiting for "if" it comes back but rather "when" it comes back. Some Stage IV people never got the luxury of following the stages in chronological order - and they did everything right. Some had regular mammograms but were still diagnosed Stage IV from the beginning and others went from Stage I to Stage IV with a couple of decades in between.

I just wanted to point out that it's all a matter of personal perspective.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debily Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2016 at 3:51am
My message is this; Hope yes of course Hope with all your heart and pray too!  I am a six year survivor of TNBC and it has been a long hard road.  I am ALIVE and this is the most important point, however, there is more to be said about this dreaded disease.  Because it is so aggressive it has to be matched with treatments that are hard on the body.  Some treatments destroy healthy tissue...needed healthy tissue like your heart.  Six years out and I live with pain...everyday...no I do not like medicine so I do not take pain medications the hardest drug I take is Lyrica for the fibromyalgia I developed.

They looked me in the eye and told me my heart was safe from the Chemo and they lied! I have gained and enormous amount of weight and feel as if cancer consumes me, though Dr.'s say otherwise...they want to put me on all kinds of medications including antidepressants...because like, who might get depressed knowing you have cancer, right?  I prefer to keep my wits about me and not be bullied into anything.  I just wanted the people who read these forums to know you can make the choices not have them pushed on you.

I suffer daily and the pain I go through is directly related to the treatment of my disease.  I am not bedridden yet but I presume it will happen one day though I fight it with all my might and some of the Lords handiwork.  Since I was informed of my condition I have studied and read many forums, books, and actually signed up for College; Healthcare Administration...I learned how to find information, and believe me they keep it nice and simple on these websites as to encourage rather than discourage...and that is fine; but I say to you dig deeper...learn how to use the SEER program and get familiar with your specific diagnosis.
 
I may very well be done with Cancer but now I have so many other issues, I cant walk more than half and hour or even sit up for an hour without extreme pain. I have Pulmonary Embolisms so I do not breathe well and it seems like many other issues have taken hold...and I hold them liable to the Chemo Cocktails I received. 

Above all I wish you well and Gods hand of protection over you in these things I pray...Amen!










bc
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2016 at 6:15am
Dear beloved TNBC Foundation family,

I am here to report that my daughter this past August celebrated 11 years NED.

Because of her BRCA mutation (inherited from me) she had risk reducing surgeries after her original quadrantectomy. If she had been diagnosed today, probably her treatment of ACT might have been different but so far, thankfully, it has worked.

She is healthy, fit and does yoga 4-5 times a week. 

All I can do is keep praying that she remains NED. I believe she is cured and so does she.

I am a patient advocate and I am helping people with cancer every day of my life, as a volunteer, and I feel privileged/blessed to do this work. I tell everyone I am helping to "try to find the beauty in each day." Easy advice to give and hard to follow, I recognize but having a positive attitude can help, in my opinion. And enjoying and appreciating the positives in your life seems to help many.

There is no perfect here regarding TNBC or other cancers but I wanted to thank/congratulate The TNBC Foundation on their 10th anniversary. Their commitment to our community has been pure and inspiring to watch. Under the leadership of Hayley Dinerman, Executive Director, much progress has been/will be made regarding this difficult disease. She continues to work tirelessly with her colleagues to try to make life better for those with TNBC and for those in the future. And the research that has been and will be funded by TNBC Foundation continues to give us all hope.

I believe we are making progress. 

with my love to all here,

Steve




Edited by SagePatientAdvocates - May 18 2016 at 6:32am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (1) Thanks(1)   Quote petersdraggon Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2016 at 3:26pm
My wife had a recurrence of TNBC and was getting grave and currently in a clinical trial of Keytruda and Halaven and responding well.

https://clinicaltrials.gov/ct2/show/NCT02513472


Here is some more encouraging news on the horizon:

http://medicalxpress.com/news/2016-05-triple-negative-breast-cancer.html

Keep the faith!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2016 at 3:42pm
Thanks for the update, I/m sorry your wife had a recurrence,

Hope your wife contnues to stabilize.


Edited by gordon15 - May 19 2016 at 4:18am
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kreynolds Quote  Post ReplyReply Direct Link To This Post Posted: Oct 03 2016 at 10:57am
I had to respond because of what I saw on the first page of this forum which had been posted several years ago. I was horrified when I saw someone post in this forum that triple negative breast cancer is not curable that the life expectancy is 18 months. While my heart goes out to the father who lost his daughter to this terrible disease (I lost my dad to colon cancer when I was only 16 years old so I know what it is like to lose a family member to cancer), people need to know that statistic simply is not true. How do I know? Because it has been nearly nine years since my diagnosis. 

On December 3, 2007, I learned a spiculated mass had been detected in my left breast during a routine mammogram. I had just turned 47. That mass turned out to be a 3.5 cm grade 3 tumor and I had triple negative invasive ductal carcinoma.

I opted to have a lumpectomy and did dose dense chemo (4 rounds of A/C and 4 rounds of Taxol) as well as radiation. I am still NED.

Does the thought of recurrence still enter my mind? Of course it does and I think it always will. I had a couple of weeks of back pain earlier this summer and the thought crossed my mind more than once that cancer had returned. I was very relieved when it turned out to be merely a strain and I have been as good as new for several months. 

As cancer survivors, I believe we need to be realistic but at the same time, we should not be pessimistic. We need to be aware of the risks we face but we must not let them scare us to the point that we cannot be thankful that TODAY we are living!

A month after radiation ended, I was diagnosed with type 2 diabetes. Two years later, I suffered a ruptured brain aneurysm and a stroke in my sleep. Fortunately I got sick when it happened and my husband, who had not yet dropped off to sleep, realized something was horribly wrong. It is a miracle that I survived because most people who have this happen in their sleep... never wake up. Still, I have those things on my mind in addition to cancer recurrence but I cannot allow those fears to consume me. All I can do is do the things I know to do and not do the things I shouldn't do. Is that any guarantee as to how long I will live? No but none of us have any sort of guarantee, do we? 

If you have been diagnosed with TNBC and are reading this or if someone you love has TNBC, take hope. Yes, it is a terrible disease and yes, far too many women, especially young women, die. At the same time, there are many long time survivors like myself. In regards to statistics, my oncologist put it this way: These are NOT actual statistics but just say for example the statistics say that 90 out of 100 women diagnosed with TNBC die within 10 years. Why do you assume you are one of the 90 rather than one of the 10 who do not? Hmm... you know, that was a very good point! 
 
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