Triple Neg w/mets

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akotha
akotha Member Posts: 2
edited June 2014 in Triple-Negative Breast Cancer

Hi ladies..

My mom was just told this week that she is triple neg.  For some reason (don't ask me why), her onc. was hesitant to give her this info and did not tell her until she asked him directly after reading an article in Oprah's mag this month.  

Anyhow, she was diagnosed w/recurrence this past April - mets found in her bones - arm and spine.  She just completed rads on the arm and 4 months of chemo (Taxol and, I believe, Avastin - the one that causes the nose bleeds?).  Her follow-up MRI last week showed what looked like a progression of the mets and no reduction.  Her white and red blood cells are so low that her onc. said she must take 2 months off of chemo and then start up again.  She said her wbc were ~2,000.

Her onc also asked her if she would be willing to travel for treatment - she would.  He mentioned a chemo, but also offered that she get a 2nd opinion and do some research, etc.

So now we are very worried - as 2 months off sounds like a long time.  Plus, now we want her to be sure to have the best of the best in oncologist recommendations - esp. now that we have learned she is triple neg.

Thoughts on where to start???  I saw a post discussing MSK and MA-Anderson.  Anyone have advice to share as I start helping her to research this??

Thanks so very much in advance.

~A 

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  • jeanne46
    jeanne46 Member Posts: 1,941
    edited October 2007

    Avastin and abraxane (or taxol) is one of the most common chemo cocktails given to triple negs with bone mets. There are many other chemos that can be used if these don't work. A second opinion is a really good idea. Not sure where you live, but MD Anderson, MSK and other places like UCSF or UCLA (I live in California) are good for second opinions. I would suggest seeing an oncologist who specializes in breast cancer.



    I am also a triple negative with mets to bone and some soft tissue. I ended up seeing an onc in private practice (the entire practice specializes in breast cancer) for a second opinion and was so impressed decided to stay with him. I have to drive a few hours away to see him and get my treatments, but for me, it's worth it.



    There are also clinical trials available (you can check clinicaltrials.gov).



    Taking a month or two off chemo may not be all that bad, especially if your mom's counts are so low. There are some injections that help counter the low cell counts like aranesp or procrit or neulasta, but low white cell counts (neutrapenia) is really dangerous if left untreated and can cause serious infections. It's a common side effect of chemotherapy and chemo doses are often either lowered or delayed until counts come back up.



    One last thing. Was your Mom triple negative when she was first diagnosed? Also, how was the recent diagnosis made? If it was done on bone tissue, it is reasonable to have the test repeated (they should do a FISH test). I know of labs that have made mistakes, so it's always good to have a test like that repeated.



    I wish your Mom the best of luck!

    Jeanne

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  • Indigoblue
    Indigoblue Member Posts: 274
    edited October 2007

    A rose is a rose is a rose is a rose is a rose is a rose is a rose is a rose is a rose; by any other name

    gertrude stein

    a   breast cancer is a breast cancer is a breast cancer....

    Indi

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  • nightheron08
    nightheron08 Member Posts: 10
    edited October 2007

    Triple neg. seems to be something they don't what to do with..oh well you might know I'd have that, so far I don't have mets. I always quote my treatment though..oh well I always told my surgeon I wanted to die on the table............

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  • CalGal
    CalGal Member Posts: 469
    edited October 2007

    Another trip neg with mets here ...

    As for low wbc and rbc, did the onc offer your mom anything?  My wbc seems to hover at low normal regulary and when on chemo, I had to do the self-injections of Neupogen to keep up my wbc.  Not fun, but for me, I never missed any chemo ... and stayed cold and flu-free while my husband and others got sick ...

    There's really no one right answer for treatment ... I'd go to a major cancer center ... as I live in LA, I've fortunate to have lots of convenient options (particularly when I was at my now-former HMO, I got 2nd opinions at UCLA, COH, USC).    From my research, MD Anderson stands out as more aggressive with bc mets.

    On the mets thread, I've posted about the next Metastatic Breast Cancer Network conference which will be held at MD Anderson Nov 17-18.  It's free, but you have to register at www.mbcnetwork.org

    CalGal 

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  • jin
    jin Member Posts: 17
    edited October 2007

    Jeanne: My sister is TN/with mets. She had surgery, chemo DD AC/T, and 33 radiations. (from Feb.07 to Sep) One week later she was dx mets to liver, spine. Basically, chemo and radiation both were not working on her. She is coming to La from other state so I can take care of her better. Would you give me some advises about bc specialist? You can send to my private message. Thanks.

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  • Indigoblue
    Indigoblue Member Posts: 274
    edited October 2007

    Ripples of Tripping over triple negative aggressive breast cancer drive me crazy.  I don't believe it's a "breast" cancer, in the first place, and secondly, I don't think the oncologiists know what not about this horrible cancer.  It's an enigma.  They give us all this jargon and dread, but they do not know a fiipping thing about the cause, cure or treatment.

    They give us a lot of bull, tell us we will be "cured", but it's a bunch of science, bio nonsense mixed up with the lies regarding outcome, life expectancy and ultimate statistics drawn up by a bunch of idiots who think they know something when, in fact, know nothing what so ever.  It is an expensive game they play with our life, quality of life and spiritual hopes and joy.........

    We live, we die, we cry, then we go. 

     I am sorry, get it all too well...triple negative horrormone cancer primarily  is get out or town, bad.

    The treatments at best are almost worse tthan the diagnosis.

    Indi

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited October 2007

    I don't have mets but I'm triple neg. I will say this..not only triple negs get mets...And the good thing with triple negs is that our risk of getting any kind of relapse is lower after 2 years. So, if we get past the 2 year point, we have a better chance than those who are not triple neg.

    There is also a recent study (that I can't quote..can't remember) that says that if we make it to the 8 year mark, there is an extremely low chance that you would ever get the horrid disease again.

    That said, there are are contradicting studies out there for all types of bc. But ya know Ladies...you need to find a space to store the anger. We are all angry that we were diagnosed with bc..triple neg or not...and we need to try to use the energy towards living fully instead of being angry...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Well said, Ravdeb!

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  • Watson
    Watson Member Posts: 1,490
    edited October 2007

    Ravdeb,

    You said it well.

    Akotha,

    Keep us posted on how your mother is doing.  Sorry that I am no help.

    Watson

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