Triple Negative Breast Cancer

pinkkari09
pinkkari09 Member Posts: 877
edited March 2014 in Breast Cancer #1
Hi everyone, I have been diagnosed with stage IIIc triple negative BC. I hear of all these wonderful drugs that they use for women with estrogen produced BC etc. Does anybody have triple negative and what do they do with us??

Comments

  • Aortus
    Aortus Member Posts: 967
    #2
    Some info on "triple negative"
    My beloved wife Moopy was dx'ed 11/17/2008 with stage IIIa "triple negative" BC. She's feeling wiped out from her own medical adventures this week (all is well, thank God) or she would be writing this.

    It does get galling to hear the idiotic term "triple negative" tossed around. It does feel frightening to know that there are (as yet) no specific treatments for "triple negative" BC. On the bright side, I can tell you that there are lots of "triple negative" BC survivors out there, some very long-term, and there is no reason why you can't be one of them too!

    Back in April, Mimi (a tireless and skilled researcher who is, like Moopy, a "triple negative" BC survivor) and I collaborated on an informal intro to "triple negative" BC. You can find it here; hopefully you will find it useful. The bottom line is that despite all the misleading and downright wrong crap you can find out there on the Internet about "triple negative" BC, you have nothing to freak out about and lots of good reasons to have hope.

    Best,
    Joe
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #3
    Aortus said:

    Some info on "triple negative"
    My beloved wife Moopy was dx'ed 11/17/2008 with stage IIIa "triple negative" BC. She's feeling wiped out from her own medical adventures this week (all is well, thank God) or she would be writing this.

    It does get galling to hear the idiotic term "triple negative" tossed around. It does feel frightening to know that there are (as yet) no specific treatments for "triple negative" BC. On the bright side, I can tell you that there are lots of "triple negative" BC survivors out there, some very long-term, and there is no reason why you can't be one of them too!

    Back in April, Mimi (a tireless and skilled researcher who is, like Moopy, a "triple negative" BC survivor) and I collaborated on an informal intro to "triple negative" BC. You can find it here; hopefully you will find it useful. The bottom line is that despite all the misleading and downright wrong crap you can find out there on the Internet about "triple negative" BC, you have nothing to freak out about and lots of good reasons to have hope.

    Best,
    Joe

    Thanks, Joe
    In more ways than 1. You are an angel sent by God. Your postings inspire me. It appears to me that Moopy means the world to you.

    Continued loved and strength for you and Moopy.


    VickiSam
  • mimivac
    mimivac Member Posts: 2,143
    #4
    Welcome
    Joe is right and also a tireless researcher and all-around fantastic supporter. There are things that can be done for triple negative beyond chemo/rads. Ask your oncologist what else she recommends after your conventional therapies are over. Even though I am done with chemo and radiation, I ask my onc. regularly if she has heard anything new. In fact, I'm visiting her today armed with my usual notebook of questions. One thing that is especially important for us triple negatives is diet and exercise. 3-5 hours of vigorous exercise a week and a low fat diet (33 grams or less a day) are recommended. It's something you can do for yourself to help lower your risk of recurrence. Ask more questions. We are here for you.

    Mimi


    PS. Joe, please let Moopy know that I am thinking of her and relieved that her medical adventures went well this week.
  • Cat64
    Cat64 Member Posts: 1,192
    #5
    mimivac said:

    Welcome
    Joe is right and also a tireless researcher and all-around fantastic supporter. There are things that can be done for triple negative beyond chemo/rads. Ask your oncologist what else she recommends after your conventional therapies are over. Even though I am done with chemo and radiation, I ask my onc. regularly if she has heard anything new. In fact, I'm visiting her today armed with my usual notebook of questions. One thing that is especially important for us triple negatives is diet and exercise. 3-5 hours of vigorous exercise a week and a low fat diet (33 grams or less a day) are recommended. It's something you can do for yourself to help lower your risk of recurrence. Ask more questions. We are here for you.

    Mimi


    PS. Joe, please let Moopy know that I am thinking of her and relieved that her medical adventures went well this week.

    Curious
    What does Triple Negative mean? Does that mean Her2,Est/prog negative?
    Cathy
  • mimivac
    mimivac Member Posts: 2,143
    #6
    Cat64 said:

    Curious
    What does Triple Negative mean? Does that mean Her2,Est/prog negative?
    Cathy

    yep
    Cathy,

    So-called triple negative breast cancer is negative for the hormones estrogen and progesterone and does not overexpress the HER2 gene, so it is ER - /PR - /HER2 -
    Therefore, as Joe said, there aren't any targeted therapies for it yet like Tamoxifen, etc. for the ER/PR positive cancers or Herceptin for HER2 positive. However, chemo and radiation are generally very effective on triple negatives.
  • Cat64
    Cat64 Member Posts: 1,192
    #7
    mimivac said:

    yep
    Cathy,

    So-called triple negative breast cancer is negative for the hormones estrogen and progesterone and does not overexpress the HER2 gene, so it is ER - /PR - /HER2 -
    Therefore, as Joe said, there aren't any targeted therapies for it yet like Tamoxifen, etc. for the ER/PR positive cancers or Herceptin for HER2 positive. However, chemo and radiation are generally very effective on triple negatives.

    Mimi
    Thank you for the info. So...I'm not sure how to ask this..but,is this a "less agressive" cancer?
    Cathy
    P.S. Where's your weekend post? I look forward to reading what everyone is doing this weekend even though I don't post about my "dull" life!
  • mimivac
    mimivac Member Posts: 2,143
    #8
    Cat64 said:

    Mimi
    Thank you for the info. So...I'm not sure how to ask this..but,is this a "less agressive" cancer?
    Cathy
    P.S. Where's your weekend post? I look forward to reading what everyone is doing this weekend even though I don't post about my "dull" life!

    Hey Cat,
    Well, I wish it meant that it was less aggressive, but in fact, triple negative can be more aggressive. But today my oncologist told me that it was just a little more aggressive. There are other more complicated issues of different kinds of triple negative as well -- basal-like tumor versus non-basal-like tumor. This type of cancer is not as well understood as estrogen/progesteron and/or HER2 positive cancer. That is part of the reason doctors seem a bit dismaybed by it. But it does not necessarily mean a worse outcome by any means.

    Mimi

    PS -- I am getting ready to do the weekend update. Thanks for asking!
  • pinkkari09
    pinkkari09 Member Posts: 877
    #9
    Thank you everyone
    Thanks for all your information and words of encouragement. I've been a bit scared of the whole thing and it's just really sinking in that I have cancer let alone one that needs more research. Good to know there are survivors out there :)
    Keeping the Faith,
    Kari
  • mimivac
    mimivac Member Posts: 2,143
    #10
    pinkkari09 said:

    Thank you everyone
    Thanks for all your information and words of encouragement. I've been a bit scared of the whole thing and it's just really sinking in that I have cancer let alone one that needs more research. Good to know there are survivors out there :)
    Keeping the Faith,
    Kari

    Hi Kari,
    There are many, many survivors out there. Hang in there.

    Mimi
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #11
    mimivac said:

    Hi Kari,
    There are many, many survivors out there. Hang in there.

    Mimi

    MimiVac and Moopy .. dumb question
    ER/PR negative .. Her2 positive .. what would this be called ? Anyone


    VickiSam
  • Aortus
    Aortus Member Posts: 967
    #12
    VickiSam said:

    MimiVac and Moopy .. dumb question
    ER/PR negative .. Her2 positive .. what would this be called ? Anyone


    VickiSam

    Not a dumb question at all.
    I have heard ER/PR negative, HER2 positive BC referred to as "double negative."

    Just as I believe "triple negative" is a bad name for tumors which do not respond to hormonal treatment, I also believe referring to an ER/PR negative tumor as "double negative" is a bad idea. Isn't there enough negativity associated with BC - with its diagnosis, its various treatments, and the challenge of life in its aftermath?

    Why needlessly throw around the term "negative" when a positive outlook is so very important in the fight against this terrible beast?
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #13
    Aortus said:

    Not a dumb question at all.
    I have heard ER/PR negative, HER2 positive BC referred to as "double negative."

    Just as I believe "triple negative" is a bad name for tumors which do not respond to hormonal treatment, I also believe referring to an ER/PR negative tumor as "double negative" is a bad idea. Isn't there enough negativity associated with BC - with its diagnosis, its various treatments, and the challenge of life in its aftermath?

    Why needlessly throw around the term "negative" when a positive outlook is so very important in the fight against this terrible beast?

    Thank you .. Aortus/Joe
    I think you for the insight. This give me some food for thought.


    VickiSam
  • sobrevivire
    sobrevivire Member Posts: 4
    #14
    I am also triple negative
    Hi everyone,

    I am so glad to hear in this forum that there are so many long time TNBC survivors!!!

    I am 36, was diagnosed last year with a IIIA ductal invasive BC with 3/19 positive lymph nodes. Unfortunately, cancer cells passed to the lymphatic system and after 8 chemo cycles, a lumpectomy, 2 more chemo cycles, radiation therapy and 3 months of happiness thinking I had left cancer behind, I had a recurrence... This time, both breasts, several lymph nodes in the thoracic area and a spot on my pelvis. I am currently back on chemo, but determined to be a VERY long time survivor!!! For me and for my 2 year-old!!! Both times my response to chemo has been great, meaning that tumor(s) and lymph nodes have shrunk significantly very quickly.

    Now, what I also wanted to share with you is that there currently is a clinical trial out there for triple negatives. THe drug is in phase III of development and right now it is coded as BSI.-201. So there is more than hope for all of us!!!

    I am happy to have found you alla!
  • sobrevivire
    sobrevivire Member Posts: 4
    #15
    mimivac said:

    Welcome
    Joe is right and also a tireless researcher and all-around fantastic supporter. There are things that can be done for triple negative beyond chemo/rads. Ask your oncologist what else she recommends after your conventional therapies are over. Even though I am done with chemo and radiation, I ask my onc. regularly if she has heard anything new. In fact, I'm visiting her today armed with my usual notebook of questions. One thing that is especially important for us triple negatives is diet and exercise. 3-5 hours of vigorous exercise a week and a low fat diet (33 grams or less a day) are recommended. It's something you can do for yourself to help lower your risk of recurrence. Ask more questions. We are here for you.

    Mimi


    PS. Joe, please let Moopy know that I am thinking of her and relieved that her medical adventures went well this week.

    diet and exercise for TNBC
    Hi Mimi,


    thank you for your posts. They are so inspirational!

    I have a question, why is it specially important for us TNBC to watch fat intake? Also, why 3.5 hours of vigorous exercise per week?

    thank you!
  • hncroper
    hncroper Member Posts: 14
    #16
    I am 31 years old and was
    I am 31 years old and was just diagnosed with stage 3a ductual breast cancer. My first chemo was this past Wednesday.. I am also triple negative. I had a lumpectomy, and sentinel node biopsy which unfortunately 23 of my 25 lymph nodes were cancerous. They removed all of my underarm lymph nodes. So it is very scary because you hear triple negative and not alot of information from the doctor because they do not understand it as much.So keep your chin up and know that you will get through this.

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