Stage 4 triple negative 5 year survivors

kerrilyn
  • By kerrilyn · January 12, 2010 at 11:35 pm · 40 replies
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Hello Ladies,

I spend alot of time lurking around on these board and I love reading all the encouragement and support everyone gives. Something on the boards makes me cry everyday for someone or just being scared for myself.I get so excited when I read posts about being NED or just having good scans.

I am 39 original diagnosis IIb in 2003, mets to lungs and supraclavicular lymph node 8/2009,TRIPLE NEGATIVE both biopsy's. So my question is..... are there any stage IV triple negative 5year survivors out there? I never see any! I am BRCA1 positive also. I lost my mom to this when i was 25 her battle was not very long about 1 year after being stage 4. I am 6 months into this and can't imagine not being here in a year. Especially for my 2 boys.

Just looking for a little encouragement my way.......Its my turn to whine........

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40 replies   

Lukesgrandma

Dear Kerrilyn,
Like you, I would love to see a five year survivor, and maybe we will. I'm also TN and BRCA 1+. I do think you will be here more than a year! I was diagnosed just one year ago, and I'm still feeling well and enjoying life. I had liver mets on diagnosis, had several months of NED, and went back into treatment in December...new liver tumors. I have high hopes of seeing NED again, and when my disease progresses, there are the Parp inhibitor trials to hope for. If we can hang in long enough the Parp inhibitors will be available to everyone, and there are always new advances being made. Don't give up hope...even if we don't see a five year survivor. Maybe we'll be the first!
Susan

marnie

Original diagnosis 7/02, invasive ductal, stage 2B, triple negative. Did the chemo, surgery, reconstruction, etc. Finished in 12/03 and made it to 12/05 and then diagnosed with bone mets to ribs and sternum. Started chemotherapy and have been on it ever since, one regimen or the other. Despite this, mets continued to liver, lung and brain. Somehow I manage to keep going and I work full-time so if I make it to the end of this year, it will be 5 years.
Those of us surviving are making the new statistics and longer survival rates because of all the new drugs just in the past 5 years.
And thats all I have to say about that!

sr2603

Kerrilyn: I have 2 triple negative friends. Had their surgery and chemo, it never came back. One girl is 20 years out, the other is 7 years out. I was diagnosed in 2005 triple negative with a recurrence to both lungs 2 years ago. My treatment is keeping the tumors reasonably stable. I know that this can change at any moment in time, but I am kind of used to it and just try and get on with life. April will be my 5 year anniversary and I expect to see it with bells on! Never give up hope Kerrilyn. We are out there beating the odds. Statistics are just numbers - you cant compare them to individuals!

blessedMomof2

I can totally sympathize with your feelings of uncertainty. I was diagnosed 6 years ago at age 34 at stage 1, no nodes. Had bilateral mastectomy, bilateral oopherctomy 8 rounds of chemo, tamoxifen. I am also BRCA2+. 4 years later diagnosed with mets to liver and lymph nodes and recently bone mets to right hip bone. I am onto my third year with mets and have only done two treatment protocols. I just started the parp/irinotecan study at Yale University in New Haven, CT. If you are in the Northeast they are accepting triple negatives and BRCA + candidates. Try to hang in there. There are so many options for us and many more to come.

stuartrose

Hello Kerrilyn. I was diagnosed with Stage II in 2001 and in 2006 was diagnosed with a new primary on my opposite side. I got a complete mastectomy and already had a hysterectomy. In 2008 I had spread to my supreclavical (sp) area and in October of 09 had nodes lighting up in my abdomen and lower abdomen/back. I've started treatment again and am waiting for a PARP trial (I'm on many lists). I am triple neg and BRCA 1 + . I also lost my Mom when she was 54 to ovarian cancer-she had BC when she was 33. It can be frightening thinking about it to much. I have 3 boys that I am determined to see grow. My youngest is 9. Keep trying to remember that the cancer does NOT define who you are. You are a strong young mother who wants to be here for a long time.
The PARP inhibitors are a very good thing for us. Hopefully it won't be to much longer that they will be available to all.
Hugs,
Kris

ReneP

triple negative
stage 1 - original diagnosis '05
mets '08
feels good to be alive in '10

living fully, one day at a time

Ahaha

I was diagnosed triple negative in Jan. 2007 -- just 3 years. Original breast tumor 2002. The reoccurence in 2007 was as bone cancer. Has not yet spread to other organs. It has never "remitted" but has someones been stable, or slight shrink, but for the most part a slow steady growth in bones. Oncologist does say this is not acting as aggressive as is typical for triple negative.

Shanti

I was dxd triple negative with mets in 2/07. So I am 3 years with mets only in bones. Mine sounds a lot like Ahaha with mets slowly growing and shrinking in bones.

Terry

brando

Hi Kerrilynn,

I am wondering about your supraclav. nodes...did they show up in any scans with your first dx, or were they known only once you were deemed stage 4?

My supraclav. node on my left side under collar bone lit up (same side as bc) with dx...while I had the chemo, surgery, and rads, I never had anything done with the supraclav. node...it haunts me that they never removed it, but I also wonder if they could not remove it b/c of its location and the damage it could do...

---brando

brando

Hi Kerrilynn,

I am wondering what your tx's were the first time around...did you have a full mast., chemo, and rads?

--brando

JillAline

Hi there. Triple negative Stage IIB aggressive breast cancer originally diagnosed in June 2004. BRAC1 and 2 negative, so I guess that makes me quintuple negative, with no apparent explanation as to why I have cancer. When I whined "Why me?" to the oncologist, he replied "why not you?" To that I said, "Well, why not YOU?" Sometimes oncologists are dopes.

Recurrence in June 2009 with "indolent" mets -- one to right 8th rib, one to left upper lobe of lung, and 2 small lesions to the brain. I've had gamma knife to the brain, and am currently doing Abraxane, Avastin, and Zometa.

I'm already a 5 year survivor since this is the same cancer and since it changed from aggressive to indolent, I think I was beating it on my own pretty well before it showed up on scans.

I intend to live for a great deal longer than the 5 additional years the oncologist projects for me. I'm young (okay 50, but a young 50), I'm healthy, and I'm pissed off at cancer.

Between now and early February I'll have various parts of me scanned to see what's going on. I hope to get off the Abraxane and just do maintenance Avastin and Zometa -- along with some weird "out there" stuff.

I'll check in with you in 20 years and we'll all have a laugh about this. Deal?

Stubborn

Kerrilyn,
I was diagnosed in 3/06 with a recurrence 1/08 in my lungs so I am going on 4 years. Been on chemo for the last 2 years. Obviously, not what I would have chosen but life is still good and enjoying my family every day.
Hang in there. They are finally focusing on Triple Negative so there is light at the end of the tunnel.
Chris

beachgirl6

I too had supraclav light up. My breast surgeon said that this area is tricky for surgery as it can cause permanent damage. My NJ onc said chemo and radiation. My Sloan onc said chemo only. didn't want to do radiation because it would eliminate an ability to "feel" the spot to see if it came back again. End result, chemo , no surgery, no radiation. Only time will tell.

ebren

Kerrilyn,
I too lurked around this site at first,Fearful of what I might learn. I am also TN diagnosed in 2006 finished chemo in 2007 and now have lung mets diagnosed oct 2009. TNBC is by nature aggressive and chemo at the moment the only option. That being said it seems like many of us have mets that is not progressing as fast as it was in the breast or has been slowed down by chemo. I went into Sloan and the oncologist said the field is exploding. I hang on to that thought. I have days where fear could take over but I try not let it. Then cancer wins. None of us know how long we are going to be here, even those of us without cancer. Sometimes instead of feeling down I turn it around and say maybe this is a gift. To learn to appreciate all the things we should be appreciating and enjoying about life. I had my moments of being down and overwhelmed and I'm done with that. I try not to focus on the things I have no control over. I choose happy. Stay in the moment. love yourself, love what is good about your life. Thats how I am trying to live and when cant I come here to the people who understand how we feel. Recharge and start over. Hang in there, your not alone.

stuartrose

ebren that is perfect....couldn't have said it any better. It is so good to know we are here for one another.

Kris

beachgirl6

ebren--
Who did you see at Sloan? i saw Dr. Andrew Seidman. REally like him. Personality. Funny. And took the time to explain things very well. I plan to go back to him again after my next PEt to see what he says next step should be or if anything new out there to help me along. I want to stay NED as long as I can.

By exploding. what new things in the pipeline for us TNBC?

kmccurn

Hey there, I wanted to share my experience w/ ya. I was diagnosed at 37 w/ TNBC in March 09 and now I have mets to the liver at age 38. Curious what ur treatments are? I have 3 young kids myself and can understand what ur going through. Maybe we can help support one another!
SHELL

ebren
  • By ebren
  • Reply 702986 · In reply to 700087 by stuartrose
  • January 16, 2010 at 9:25 am
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Yes it does. As women and mothers I think we all try to keep doing what women and mothers do, take of others. So its nice to come to a place where you are just one of many who understand.

ebren
  • By ebren
  • Reply 702988 · In reply to 700087 by stuartrose
  • January 16, 2010 at 9:26 am
  • Report post

Thanks Kris

ebren
  • By ebren
  • Reply 703012 · In reply to 701246 by beachgirl6
  • January 16, 2010 at 9:42 am
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beachgirl, I saw a breast oncologist Dr. Theodoulou at Sloan. The PARP trials seem to be very incouraging and she said they are flying through the trial which is a good sign. She thinks maybe two years it will be open to everyone. I am not a candidate for the trial due to a second primary carcinoid tumor in my lung. She also tested my tumor for a specific marker for a Sloan trial. If your tumor has this marker they give you a drug called Bicalutamide,which was originally trialed for prostate cancer. My understanding is if you have this marker the drug could slow down the blood supply to the tumor. I unfortunately did not have the marker but it might be worth checking out. I thought it was a good study because it is not randomized and you will only recieve the drug if you have the marker. More specific for your tumor. Good luck.

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