New here~ Does anyone have triple negative breast cancer?

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I hope I'm posting to the right board. Hello, my name is Karen and I am faced with a localized recurrence. I had just finished rads and will get the results of Pet Ct Scan and then chemo.

Nice to be among friends,
Karen
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Comments

  • carkris
    carkris Member Posts: 4,553 Member
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    Welcome to this site, we are
    Welcome to this site, we are a great supportive group. I am not triple negative but did have a local recurrance. Many people will chime in as we have many triple negative people here!
  • carkris
    carkris Member Posts: 4,553 Member
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    Welcome to this site, we are
    Welcome to this site, we are a great supportive group. I am not triple negative but did have a local recurrance. Many people will chime in as we have many triple negative people here!
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
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    Welcome to this site i
    Welcome to this site i didn't have localized recurrence but i just wanted to say hi.Frankie
  • jamiegww
    jamiegww Member Posts: 384
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    Hi Karen
    I was diagnosed with triple negative two years ago. I had a mastectomy, chemo, and radiation. I just had a mamogram with no evidence of disease so I am feeling pretty good. There are other members on this board with triple negative and maybe they will respond as well. Everyone seems to react differently so there are no "real" guarantees but we will be here when you need us and that,my friend, is a guarantee!!!

    HUGS!!!
    Jamie
  • linpsu
    linpsu Member Posts: 747
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    TNBC
    Karen -
    I was diagnosed with triple negative bc about 4 years ago. It was DCIS so I had a lumpectomy but dr. couldn't get clean margins so I had mastectomy (one side), followed by reconstruction with expanders and an implant. Then 2 years ago I had a localized recurrence; very rare, but it can happen. It was Stage 3C at that point, so I had chemo first (4 A/C, 4 Taxol), then another mastectomy to remove the implant plus a lot more tissue plus 14 more lymph nodes (4 were taken the first time). Then I had 6 weeks of daily radiation. So I've been feeling fine since all of that, but of course I'm worried that it will come back again.

    Please let me know if you have any specific questions. I'm here to help. There are several other ladies here with TNBC; I'm sure you'll hear from them soon.

    Hugs,
    Linda
  • GrammyKaren
    GrammyKaren Member Posts: 96
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    linpsu said:

    TNBC
    Karen -
    I was diagnosed with triple negative bc about 4 years ago. It was DCIS so I had a lumpectomy but dr. couldn't get clean margins so I had mastectomy (one side), followed by reconstruction with expanders and an implant. Then 2 years ago I had a localized recurrence; very rare, but it can happen. It was Stage 3C at that point, so I had chemo first (4 A/C, 4 Taxol), then another mastectomy to remove the implant plus a lot more tissue plus 14 more lymph nodes (4 were taken the first time). Then I had 6 weeks of daily radiation. So I've been feeling fine since all of that, but of course I'm worried that it will come back again.

    Please let me know if you have any specific questions. I'm here to help. There are several other ladies here with TNBC; I'm sure you'll hear from them soon.

    Hugs,
    Linda

    thank you all very much
    I have been down, as I have RA too and finshed 33 rads and exhaustion set in catching buses, subways and jitneys (whew) running back and forth to NYC and I'm a little out it. Lots of information on the internet ~ maybe too much.
    One thing that is causing me worry is that I have stopped taking vitamins and boy I miss them. The Stress B's with b6 b12 and all and zinc and copper and c. It affected me and I'm going into chemo and wanting to have the full effect of the treaments but its hard! Sounds silly, I know. BTW I am BRCA neg and Im being tested for the androgen receptor. It may decide how I am treated.
    Anyone have any knowledge of this? Its getting more scarier as days go by. Im 61 and have little ones that I am very attached too. Aw getting sad.

    Thank you all and God Bless You
    Karen
  • MAJW
    MAJW Member Posts: 2,510 Member
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    thank you all very much
    I have been down, as I have RA too and finshed 33 rads and exhaustion set in catching buses, subways and jitneys (whew) running back and forth to NYC and I'm a little out it. Lots of information on the internet ~ maybe too much.
    One thing that is causing me worry is that I have stopped taking vitamins and boy I miss them. The Stress B's with b6 b12 and all and zinc and copper and c. It affected me and I'm going into chemo and wanting to have the full effect of the treaments but its hard! Sounds silly, I know. BTW I am BRCA neg and Im being tested for the androgen receptor. It may decide how I am treated.
    Anyone have any knowledge of this? Its getting more scarier as days go by. Im 61 and have little ones that I am very attached too. Aw getting sad.

    Thank you all and God Bless You
    Karen

    Triple negative here..
    Was dx the first time in 2009....had a lumpectomy with clean, clear margins, no lymph node involvement, stage IIa....had chemo, then 33 radiation treatments...was cancer free for 14 months..discovered an enlarged clavicle lymph node...this past June.....bc has returned in my lymph nodes...I am now considered Stage IV ... I entered a clinical trial in late June...took two cycles of that chemo...no luck with that...started the oral chemo drug Zeloda in August 5 days a week combined with radiation again for 6 weeks...I continue with the oral chemo, on 7 days, off 7 days...recent scans could have been worse but could have been better...glass half full....but I also continue with my life to the fullest...Zeloda has been very kind to me, thankfully...

    Anything we can do to help you, just keep posting....you've found an amazing group of women on this site...we care and we " get it"...
    Hugs, Nancy
  • gami43
    gami43 Member Posts: 281
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    MAJW said:

    Triple negative here..
    Was dx the first time in 2009....had a lumpectomy with clean, clear margins, no lymph node involvement, stage IIa....had chemo, then 33 radiation treatments...was cancer free for 14 months..discovered an enlarged clavicle lymph node...this past June.....bc has returned in my lymph nodes...I am now considered Stage IV ... I entered a clinical trial in late June...took two cycles of that chemo...no luck with that...started the oral chemo drug Zeloda in August 5 days a week combined with radiation again for 6 weeks...I continue with the oral chemo, on 7 days, off 7 days...recent scans could have been worse but could have been better...glass half full....but I also continue with my life to the fullest...Zeloda has been very kind to me, thankfully...

    Anything we can do to help you, just keep posting....you've found an amazing group of women on this site...we care and we " get it"...
    Hugs, Nancy

    Hi Karen - I, too, have TNBC
    Hi Karen - I, too, have TNBC which was dxed in Oct 2010 by
    yearly mammo. My tumor was also metaplastic, so I had a BMX
    in Nov 2010 with immediate implant reconstruction. Had 3 FEC
    followed by 3 Taxotere. Finished chemo mid-April 2011. I see
    my MO in mid-January,9 months post tx. I am 68 and I understand
    your sentiment re:grandchildren. Mine live close by and sure do
    help keep the old spirits up. Welcome to the site, we're a geat
    group! (where's my modesty?). Hugs to you.

    Teresa
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
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    Triple Negative Breast Cancer
    Hi Karen,

    I was diagnosed with TNBC in my right breast almost exactly 2 years ago. I had a complete axillary dissection where 22 lymph nodes were removed. 2 of them were malignant. Then came a right mastectomy. A tissue expander was put in at the time of the surgery. Then came 4 rounds of A/C and 12 rounds of Taxotere. I did not have radiation. In 6/2011 my expander was replaced with an implant and I had a reduction/lift on the opposite (non-cancer) side. I was not at all pleased with the results of the reconstructed side and the surgeon did not seem interested in fixing the results so I consulted several surgeons to see what could be done. On 12/22/11 I had revision reconstruction surgery done. Even though it is only 10 days post-surgery I can see a tremendous difference and improvement. All tissue that was removed was sent to pathology and came back negative. The 2 mammograms I have had since chemo was over have all been clean. I am considered to be in remission. If you have any questions about anything I have mentioned please feel free to send me a private message or post here. I found the website for the Triple Negative Breast Cancer Foundation to be a very helpful source of information.

    Good luck and Welcome.

    IRENE
  • GrammyKaren
    GrammyKaren Member Posts: 96
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    Triple Negative Breast Cancer
    Hi Karen,

    I was diagnosed with TNBC in my right breast almost exactly 2 years ago. I had a complete axillary dissection where 22 lymph nodes were removed. 2 of them were malignant. Then came a right mastectomy. A tissue expander was put in at the time of the surgery. Then came 4 rounds of A/C and 12 rounds of Taxotere. I did not have radiation. In 6/2011 my expander was replaced with an implant and I had a reduction/lift on the opposite (non-cancer) side. I was not at all pleased with the results of the reconstructed side and the surgeon did not seem interested in fixing the results so I consulted several surgeons to see what could be done. On 12/22/11 I had revision reconstruction surgery done. Even though it is only 10 days post-surgery I can see a tremendous difference and improvement. All tissue that was removed was sent to pathology and came back negative. The 2 mammograms I have had since chemo was over have all been clean. I am considered to be in remission. If you have any questions about anything I have mentioned please feel free to send me a private message or post here. I found the website for the Triple Negative Breast Cancer Foundation to be a very helpful source of information.

    Good luck and Welcome.

    IRENE

    Hi from Grammy
    Thank you for all your warm welcomes. Irene , you are 10 days post surgery for reconstruction and had no rads at all. That is hard to believe.

    I was dx in Feb 2009 and had a large tumor which grew to almost 7 cm when it was taken out by lumpectomy and sentinel node was positive out of the 6 nodes taken axillary disection.
    . I had adria/cytoxan and I was in an avastin clinical trial 530G of which I had avastin. The taxol part w/ avastin messed up my lungs and I was taken off but had enough of the meds to do some good. I now have a supra clavicula node and an internal mammary node recurrence one. It was seen on the MRI in July 2011 only because I couldn't get a date for a mammo sooner and I booked the mri..

    I knew something would happen so I kept my port in!
    Yes I became a member at tnbcfoundation too. They have many patient advocates and give a lot of info. Thats how I wound up going to MSKCC. Because of a very dear man who has become friends with the oncologists that specialize in this field I met Dr Traina....God Bless Him.

    Thanks to all and may we have a great 2012
    Hugs,
    Karen
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    Hi from Grammy
    Thank you for all your warm welcomes. Irene , you are 10 days post surgery for reconstruction and had no rads at all. That is hard to believe.

    I was dx in Feb 2009 and had a large tumor which grew to almost 7 cm when it was taken out by lumpectomy and sentinel node was positive out of the 6 nodes taken axillary disection.
    . I had adria/cytoxan and I was in an avastin clinical trial 530G of which I had avastin. The taxol part w/ avastin messed up my lungs and I was taken off but had enough of the meds to do some good. I now have a supra clavicula node and an internal mammary node recurrence one. It was seen on the MRI in July 2011 only because I couldn't get a date for a mammo sooner and I booked the mri..

    I knew something would happen so I kept my port in!
    Yes I became a member at tnbcfoundation too. They have many patient advocates and give a lot of info. Thats how I wound up going to MSKCC. Because of a very dear man who has become friends with the oncologists that specialize in this field I met Dr Traina....God Bless Him.

    Thanks to all and may we have a great 2012
    Hugs,
    Karen

    Another one here...
    My dx

    Another one here...

    My dx was Aug of 2010, triple neg inflammatory breast cancer. I did 6 rounds TAC chemo, bilateral mastectomy, and 44 rounds of rads. Aug of 2011 I had a local recurrence, and additional testing found mets to some lymph nodes between my lungs. Did the surgery for the recurrence (still healing from that) and then started Xeloda. The xeloda didn't work, and I'm currently taking abraxane.

    I'm looking at testing for the androgen receptor too, and I'm very curious to hear what you've learned about it. If I decide to go forward, it would be part of a clinical trial in San Fran (a 2 hour drive for me).

    Please keep posting, we like to know how you're doing.

    Hugs,

    Linda
  • GrammyKaren
    GrammyKaren Member Posts: 96
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    Another one here...
    My dx

    Another one here...

    My dx was Aug of 2010, triple neg inflammatory breast cancer. I did 6 rounds TAC chemo, bilateral mastectomy, and 44 rounds of rads. Aug of 2011 I had a local recurrence, and additional testing found mets to some lymph nodes between my lungs. Did the surgery for the recurrence (still healing from that) and then started Xeloda. The xeloda didn't work, and I'm currently taking abraxane.

    I'm looking at testing for the androgen receptor too, and I'm very curious to hear what you've learned about it. If I decide to go forward, it would be part of a clinical trial in San Fran (a 2 hour drive for me).

    Please keep posting, we like to know how you're doing.

    Hugs,

    Linda

    Hi to Jaime , Linda, Theresa and Nancy
    Sorry if I have left off someone.
    Linda I read your post and wondered why, there are a few types of chemo cocktails and who gets what and why is not known to me. I do know that theres about 6 or 7 subtypes of triple negative. My onc (the first one), wanted me to go into a parp trial ( he was furious that I chose to go with MSKCC) but it has been discussed that this is not working. Im glad to be in a treatment facility that takes the original slides and tests tham for different gene expressions. Thats when I heard about androgen receptors.
    Definitely not a one size fits all disease thats for sure . I will keep you up on what my onc says when I go Jan 6th.

    Linda you had surgery for the nodes between ur lungs. Isn't that a difficult area to operate? Talk to you soon Be well.
    Hugs,
    Karen
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    Hi to Jaime , Linda, Theresa and Nancy
    Sorry if I have left off someone.
    Linda I read your post and wondered why, there are a few types of chemo cocktails and who gets what and why is not known to me. I do know that theres about 6 or 7 subtypes of triple negative. My onc (the first one), wanted me to go into a parp trial ( he was furious that I chose to go with MSKCC) but it has been discussed that this is not working. Im glad to be in a treatment facility that takes the original slides and tests tham for different gene expressions. Thats when I heard about androgen receptors.
    Definitely not a one size fits all disease thats for sure . I will keep you up on what my onc says when I go Jan 6th.

    Linda you had surgery for the nodes between ur lungs. Isn't that a difficult area to operate? Talk to you soon Be well.
    Hugs,
    Karen

    Sorry for the
    Sorry for the confusion...the surgery was for the local recurrence. You're right about surgery being difficult for the nodes between my lungs...I asked and pushed for that surgery and all the docs said the risk outweighed the benefit. So no surgery for that...chemo for that instead.

    Hugs,

    Linda
  • GrammyKaren
    GrammyKaren Member Posts: 96
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    Sorry for the
    Sorry for the confusion...the surgery was for the local recurrence. You're right about surgery being difficult for the nodes between my lungs...I asked and pushed for that surgery and all the docs said the risk outweighed the benefit. So no surgery for that...chemo for that instead.

    Hugs,

    Linda

    no worries
    anytime I read surgery I get suicky , hope you are doing well.
    Karen
  • GrammyKaren
    GrammyKaren Member Posts: 96
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    Sorry for the
    Sorry for the confusion...the surgery was for the local recurrence. You're right about surgery being difficult for the nodes between my lungs...I asked and pushed for that surgery and all the docs said the risk outweighed the benefit. So no surgery for that...chemo for that instead.

    Hugs,

    Linda

    no worries
    anytime I read surgery I get suicky , hope you are doing well.
    Karen
  • Kylez
    Kylez Member Posts: 3,761 Member
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    thank you all very much
    I have been down, as I have RA too and finshed 33 rads and exhaustion set in catching buses, subways and jitneys (whew) running back and forth to NYC and I'm a little out it. Lots of information on the internet ~ maybe too much.
    One thing that is causing me worry is that I have stopped taking vitamins and boy I miss them. The Stress B's with b6 b12 and all and zinc and copper and c. It affected me and I'm going into chemo and wanting to have the full effect of the treaments but its hard! Sounds silly, I know. BTW I am BRCA neg and Im being tested for the androgen receptor. It may decide how I am treated.
    Anyone have any knowledge of this? Its getting more scarier as days go by. Im 61 and have little ones that I am very attached too. Aw getting sad.

    Thank you all and God Bless You
    Karen

    I am not Triple Negative,
    I am not Triple Negative, but, I wanted to welcome you to the site!


    Hugs, Kylez
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
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    yuppers
    Another triple negative person who lives with a triple positive attitude. I can't change the bc. I can only change the way I think about it. Well I can do healthy things from here forward to deter it's return but other than that we have little control over anything but our attitude.
  • nahlaaz
    nahlaaz Member Posts: 1
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    Hello Karen,
    I'm a 9 year

    Hello Karen,

    I'm a 9 year TNBC survivor. No recurrences.

    Karyn
  • catowner
    catowner Member Posts: 50
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    thank you all very much
    I have been down, as I have RA too and finshed 33 rads and exhaustion set in catching buses, subways and jitneys (whew) running back and forth to NYC and I'm a little out it. Lots of information on the internet ~ maybe too much.
    One thing that is causing me worry is that I have stopped taking vitamins and boy I miss them. The Stress B's with b6 b12 and all and zinc and copper and c. It affected me and I'm going into chemo and wanting to have the full effect of the treaments but its hard! Sounds silly, I know. BTW I am BRCA neg and Im being tested for the androgen receptor. It may decide how I am treated.
    Anyone have any knowledge of this? Its getting more scarier as days go by. Im 61 and have little ones that I am very attached too. Aw getting sad.

    Thank you all and God Bless You
    Karen

    Hi Karen, glad you found
    Hi Karen, glad you found this sight with so many supporters for you. I was diagnosed with stage 2, triple negative cancer in August 2011. I had a single masectomy and so far 6 chemo treatments, 4 A/C and 2 Taxol with 2 more treatments of Taxol left. My OC said I will not need radiation. I had no lymph nodes involved. I am 59 and also have RA. I don't know anything about androgen receptor or what BRCA means however. I wish you the best and please keep us informed. I will say an extra prayer for you every night.


    God bless you,
    Debbie
  • Tulsa03
    Tulsa03 Member Posts: 1
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    I'm TNBC too
    I had er/pr+ bc in 2003. Had mastectomy then chemo. In 2011, I found enlarged lymph nodes. That was triple negative bc on opposite side from 1st cancer. I have mets to my bones and am stage IV. I had radiation for the mets and chemo for the rest. I was in remission for 2 months then it came back. Thank goodness I was put in the hospital with pneumonia or it may have been a long time before we discovered the cancer had returned. I'm starting treatment of chemo again this week. Hope to kick it's **** this time.

    Karen