16 Yr Trip Neg Survivor!

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CalGal
CalGal Member Posts: 469
edited June 2014 in Triple-Negative Breast Cancer

Since my recurr & mets dx in 12/05, I've been searching for a long-time trip meg mets survivor .... finally, I met her!

I attended the CA Breast Cancer Research Program conf in LA last weekend.  I struck up a conversation with a woman at my table ... 

She was a 16 year triple neg mets survivor!   I don't cry easily and I almost did ...  Of course, when she was first dx'd, it was only er/pr - (no such thing as a triple neg).   She was dx'd with bone mets in 1991 ... at age 42 ... and she's still here doing great!

When triple negs initially have mets, it's usually to the soft tissue rather than bone, and my understanding is that soft tissue mets are more serious ... I'm still so happy to have met her!  

I had attended the MBCN (Metastatic Breast Cancer Network) conf last November at MSK, and was most dismayed that there were no trip negs on their panel of long-time mets survivors.  (Us trip negs were quite vocal about being overlooked and I don't think that will happen again).

Thought you all might find some joy in hearing about the long-time trip neg mets survivor!

As another mets friend of mine pointed out, it's likely that most long-time trip neg survivors would not be involved in bc activities, since they would not be on any type of treatment.

CalGal

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2007

    Yes! CalGal I knew there was always hope for us.  I will find out if I'm NED for the first time in 2 yrs in the next few weeks.  I'm also a soft tissue tumor lady.  60 nodes out 55 positive no mets other than inflammatory after 1st mast.

    Living in hope...

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  • myrnaincabc
    myrnaincabc Member Posts: 76
    edited September 2007

    Hey Ladies,

    Triple neg here had a PET two weeks ago and NED. 1 year out in June. I am having a MRI of bad breast tomorrow due to inflamitory findings? What inflamitory stuff did you have Fla Lady?

    So if it's breast cancer/ thats soft tissue right?

    Thanks

    Myrna 

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  • myrnaincabc
    myrnaincabc Member Posts: 76
    edited September 2007

    Hey Ladies,

    Triple neg here had a PET two weeks ago and NED. 1 year out in June. I am having a MRI of bad breast tomorrow due to inflamitory findings? What inflamitory stuff did you have Fla Lady?

    So if it's breast cancer/ thats soft tissue right?

    Thanks

    Myrna 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2007

    In had inflammatory bc on the entire right chest wall although way over my shoulder.  Treated with Avastan, Carboplatium and Gemzar.  Got some response..throw in herb Curmcumin and cleared up in two mths.  So far gone almost a year.

    I think it is only soft tissue cancer when it only returns in breast area and with large node involement.  In other words it does not go to outer boby area for mets.  Called locally aggressive.  They just resently gave me this label.  Just lovely...

    Hope this helps.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    It's so good, CalGirl, to have meet this woman. You triple negative women need more success stories like her. Good for you to speak up about the lack of discussion at the MSK conference.



    FloridaLady, that's my understanding too. Locally advanced, and a key is to keep trying different drugs: often you hit upon one that clears it for quite a while. Glad to see your post, was worrying a tad.



    Small molecule therapy, the inhibitors of the tyrosine kinase type, which will shut off the localized tumor's blood supply, and inhibit angjiogenesis, that is where some of the research is now going. You can hear the Brinker lecturer on this by googling: San Antonio Breast Conference, 2006, Brinker Award....



    Covering your backs some,



    Tender

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  • Rainenz
    Rainenz Member Posts: 93
    edited September 2007

    It is good to hear of long term triple neg survivors. So will add my experience to this.

    I am 10 1/2 years out from my 1st triple neg dx with 6 pos nodes and just over a year out from a 2nd triple neg dx this time with 29 pos nodes, but so far nothing anywhere else.Laughing I plan to be here for a long time and looking for a bright future!

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  • jin
    jin Member Posts: 17
    edited September 2007

    Calgal: I have seen your informative posts and knowing you are under clinic trial. Hopefully you can give me some inf. My sister just dx mets to liver two days ago. I want to transfer her to LA.

    City of Hope has clinic trial, do you familiar with it? My sister has triple neg, grade3. no brca test yet. Any input will be appreciated.

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  • CalGal
    CalGal Member Posts: 469
    edited September 2007

    Hi Jin -

    Sorry to hear about your sis with mets.

    My mets were reduced in quantity (4 to 2) and size per dose dense AC.  I then had to fight my (now former) HMO to get RFA (radio-frequency ablation) of the liver mets!  So far, so good!   It's been 15 mos and my liver is bc-free.   I'm a huge fan of RFA (and had it for possible unrelated kidney cancer too).

    Unfortunately, at 13 mos, I found at least one (maybe 2) mets to my lung.  I'm on the PARP inhibitor trial.   It is open to those who have the BRCA mutation (1 or 2) and Stage III or IV bc.  In Southern CA, the PARP trial is available at Cedars-Sinai (LA) and City of Hope (in Duarte).  

    City of Hope has many bc trials.   If you haven't already, on the internet, I would go to City of Hope and then their Clinical Trial section.   Find the trial you're interested and then contact that doctor (or the intake people and tell them you're interested in that particular trial and want a consult with the lead doctor).

    I hope this helps.

    CalGal 

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited September 2007

    Hi gals, as most of you know, I am a triple negative and about 4 weeks away from the 9 year NED time!

    Lots of us out here!

    Hugs, Shirlann 

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  • jin
    jin Member Posts: 17
    edited September 2007

    Shirlann - It is so much encouragement after seeing your post. Which stage your were?

    Calgal - Thanks for your information. City of Hope is very close to my area, I will go and check for the clinical trial tomorrow. AC worked for you but not for my sister. When she was doing AC treatment, one lumup came out on her neck and didn't shrink untile 2nd round taxol. and 33 high dosage radiations and week later found out from ct, mets to liver. She is very depressed now. I need to find the best option for her. The problem is which one is best choice? nothing promised yet.

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited September 2007

    Hi, I had a 7mm cancer, no lymph nodes.  That part was lucky, but they could not diagnose my "thingy", took them 3 months of back to back tests, and then when they finally did a biopsy, they thought I had Lymphoma.  They sent my slides to White Plains, NY to some specialist, and he diagnosed my breast cancer as Medullary, just a small sub-type, triple neg.  Also, 2 years before, when the lump first showed up, I asked for a biopsy, but was told, "Oh no, your lump is smooth, and breast cancers are spikey".  Well, Medullary is characterized by "smooth edges".  When I went to UCLA for a 2nd opinion, the mammo with the smooth edged lump was missing from my pile of mammo's as was his report.  Sighhh, did not make me a happy camper.

    Hugs, Shirlann 

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited October 2007

    Hello Trip Neg Sisters....saw the rad onc today for a routine follow-up that turned out NOT to be so routine.  The incredible tenderness (read PAIN...I am a minimizer!!) around my incision site was 'suspicious' in her words.  She did an utz right then and there and told me that it looks 'not good'.  She told me not to worry too much, that she would follow-up with my surgeon and get back to me next week some time.  By the time I had gotten home from work the rad onc had called my house 2 times.  She said I need to see the surgeon immediately and I should wait at home tomorrow for a call. 

    I HAVE to go to work tomorrow...so many things pending.  I have patients to see and tons of stuff to get done before the weekend....I had planned to take off on Monday to spend the day with my daughter who is here from NYC for a quick visit and meeting her girlfriend for the first time!

    Help...I am in panic mode...

    -H

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  • twink
    twink Member Posts: 1,574
    edited October 2007

    (((Holly)))  I wish I had more to say than I wish you some good news and peace while you're waiting for it.  The waiting is the hardest part.

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  • arnica
    arnica Member Posts: 33
    edited October 2007

    I'm a triple negative diagnosed in May 07.  I've been trying to read everything I can about this. But I'm having trouble with all the acronyms here -- I don't know the language. What's NED?

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  • twink
    twink Member Posts: 1,574
    edited October 2007

    NED= No Evidence of Disease.

    Here's a good link to help interpret the acronyms Arnica:

    http://www.websitetoolbox.com/tool/post/nosurrenderbreastcancer/vpost?id=2191098

    I was diagnosed with triple negative BC too.  Don't put too much faith in everything you read about it... much of it is outdated and downright depressing.

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  • zilpah
    zilpah Member Posts: 11
    edited July 2008

    Hi All, So nic eot hear about long time triple met survivors!!  Does anyone know of a clinical trial with Parp inhibitors that allow you to be NED when you join?? I've been looking for a while and can't find one

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  • dah0123
    dah0123 Member Posts: 115
    edited July 2008

    Hi Girls,

    I am a 13 year survivor (tested only er and pr then but both negative)!  No mets though.

    Debbie

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