Triple Negative Breast Cancer and Chemotherapy

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  • Zipmum
    Zipmum Member Posts: 16
    edited November 2009

    Sorry that you feel so bad. I know that initially I was taken aback by the triple negative diagnosis, but then I had to put things in perspective.  I have an opportunity to find out as much as I can and make responsible decisions. I am fortunate that I have a primary care physician who immediately following the diagnosis sent me to John Hopkins.  I have received excellent care so far and no mincing of the truth.  I hope that you will feel better soon and remember that in the natural we can be told many things but the key to our lives are in God's hand.  HIs word tell us "with long life will He satisfy us".

  • Zipmum
    Zipmum Member Posts: 16
    edited November 2009

    Thank for the reminder of just who is in control of our lives - Our times are in God's hands.

  • violet7
    violet7 Member Posts: 180
    edited November 2009

    Aw, thanks, Titan!  I do not want to be toast :)

  • mlo39
    mlo39 Member Posts: 2
    edited November 2009

    hello,

    Sorry to hear about your situation. I also was DX: july 2009,TN and i am 39 w/3 kids and a wonderful husband of 21 yrs.  Let me tell you what I  did. I had the DIEP Flap procedure to both breasts and thank the Lord, 12 nodes clear. Now I am faced with the oncologist that wants me to join a chemo. trial called the Tic Tac Dough...still praying about that...changing subject...I read the best book ever called "Anti Cancer, A New Way of Life" by Dr. David Servan-Schreiber(MD) it gave me so much hope and a battle plan...read Psalm 23 that gave me so much peace. Best wishes!

  • livvienigelmom
    livvienigelmom Member Posts: 25
    edited February 2010

    Janice,

        I'm with you. My doctors didn't guarantee a cure but everyone kept insisting that since I was stage one with no nodes and < 1cm that I was so lucky. I keep reading about women that have almost exactly the same dx and yet at ten months after dx they have serious mets like brain and lung and chest wall. Having been a chemo nurse years ago, I'm feeling a whole lot less than confident  about how well triple negs respond to chemo. Which brings me to another topic. Chemotherapy itself. What's the right recipe?? I had taxotere and cytoxan one dose every fourth week for a total of four treatments then radiation for six weeks. I've seen people getting adriamycin, cisplatin, platinum salts, doo da day and I'm just wondering who got the right cocktail. I was told that taxotere was emerging as the drug of choice for tnbc. My personal concern is that I didn't get enough chemo--more types of chemo or more rounds of what I got. I have young kids too. I just keep trying to get upbeat and forge ahead with life but I have a deep fear that won't let me. Hope we all make it.

    Livvienigelmom

  • dcarpenter
    dcarpenter Member Posts: 36
    edited February 2010

    Janice, it is all so much to understand... at first i just did all the treatments the docs recommended, surgery/chemo/radiation- now almost 2 year out (since June 2008)..I am starting to get a grip on things and finding out more and understanding more about my diagnosis- from a more objective place.... from what i read triple negative can be bad or maybe not, after 3,4,5 years i think you have a less chance of re-ocurrance, no mater nothing we can do but live each day and pray it does not return. I did all i could to prevent a reoccurance.  I too at first thought chemo was going to help protect me, now not so sure.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2010

    I am currently going to Taxotere and Cytoxan x4 and my tumor was < 1cm.  My last treatment is on Feb. 8th.  My onc said I was in a grey area and gave me the option of doing chemo. I'm glad to hear in Livvienigelmom's post that the TC regimen is being used more often for TNBC. 

  • livvienigelmom
    livvienigelmom Member Posts: 25
    edited February 2010

    Sugar77,

    I had my last chemo on Oct 8th, 2009 and just finished my radiation. I had read about the women who had not had hair regrowth and yes I freaked out privately in the bathroom or up in the middle of the night by myself thinking it would not grow back BUT IT DID!!!!!! I'm still a "Chia Pet" as my kids call me but it is thick and soft! As for the chemo......A group in Indianapolis is really into tnbc and they are the ones who said the taxotere was emerging as the drug of choice for tnbc. Girl my path report said I was triple negative but they said it was medullary and said I wouldn't need chemo.......K-right.........ummmm many "second" opinions one in Boston at Dana Farber, Vanderbilt, the Mayo Clinic and the guys in Indy. The diagnoses got progressively worse until we had come 180 degrees to the ever-crappy triple negative. Sigh. Glad I did the chemo and glad you did too:) Your dx and rx are almost identical to mine. I had originally 0.9 cm but they found 0.2cm when they did the lumpectomy after the biopsy.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2010

    Livvienigelmom - did they end up finding two small tumors in all, or was the tumor smaller than they anticipated (i.e., 0.2 cm instead of 0.9 cm)?  I'm glad to hear your hair is on it's way back in. I'd take "Chia Pet"  head ina minute over what I have have now...lol. FYI...there is a thread called "Anyone on just Taxotere and Cytoxan". I go on it all the time as everyone on it has the same treatment.  Jut wanted to make you aware in case you wanted to check it out. I can send you the link if you want. Let me know.

    Sherri 

  • Heismyhope
    Heismyhope Member Posts: 2
    edited February 2010

    This is my first post. I have had a lumpectomy and radiation via mamosite.  Surgery Dec 16 2009 and Radiation Jan 25-Jan29.  There was confusion in my Testing so radiation was done first but now that I am Triple Negative I have been advised by one onc to have TC 4 times 21 days apart and by another to have TAC 6 times. 21 days apart.  The first onc says the A part is too hard on the heart. The second onc says that is because the A is given in a short time and shocks the body but if given over a 4 day period is less damaging to heart and very helpful in avoiding the cancer returning.

    I am confused and would appreciate any info  anyone has on continuous infusion of the A (administered by wearing a pump over a 3 or 4 day period) as opposed to short term (one day)treatment. 

  • livvienigelmom
    livvienigelmom Member Posts: 25
    edited February 2010

    The second cancerous tissue was not a second tumor --they said it was residual from the original removal of the lump. I was very upset because the biopsy report said "negative margins". Eeeeeesh! Also, since my margins were reportedly clear, my surgeon told me to take my ten day vacation and schedule my lumpectomy for when I get back. Knowing how aggressive and nasty this type of cancer is, I would definitely have had my surgery right away because I had time before the vaca and it was only a lumpectomy w/sentinal node bx. Water under the bridge now but just makes me wonder about everything.

    How is your skin overall? Mine got really, really dry all over---still is but not as bad. Im moisturizing from the inside out too with olive oil and vit E caps/omega oil caps. Look at your fingernails and you may see a white line with each chemo rx. Harmless but weird and freaks out your friends and family.....goin to that website now..........thanks for the tip:)

  • vbabey
    vbabey Member Posts: 48
    edited February 2010

    Just finished my last chemo treatment andI it worked! I was dx'd on 9/16/09 and was started right away on 4 rounds of A/C and then 4 rounds of taxotere and cisplatin...nasty stuff...tumor was originally 9cm and at least one node had cancer (through fine needle aspiration with the biopsy). My PET right before my last treatment shows 0 cancer cells, tumor and node are not showing up at all...just a little patchy infiltrate on my lung, which they think (and I hope) is just an infections clearing...will check that out on monday....now I will do a bilateral masectomy, sentinal node and rads....hopefully it will not come back ever, but I am glad that I tried chemo.

  • violet7
    violet7 Member Posts: 180
    edited February 2010

    vbabey!  I'm so happy for you!!!  That is wonderful, wonderful news. 

  • Morgan513
    Morgan513 Member Posts: 664
    edited February 2010

    Congratulations!

  • livvienigelmom
    livvienigelmom Member Posts: 25
    edited February 2010

    Vbabey-

    I am so happy for you!!!!!

  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    Wondering where you got the information that it doesn't matter what size of tumor or nodular involvement if a person is TN...have looked everywhere for something to substantiate that and couldn't find it...My onc and breast surgeon were estatic when my nodes were clear and the tumor was smaller than expected and they both knew I was tn...

    Also..if you go to life math breast cancer therapy...it sure does make a difference based on 15 years..just curious.

  • nonijones333
    nonijones333 Member Posts: 120
    edited February 2010

    Titan, what site did you read that??? I was on the other day and was rushing threw some of the latest posts and happened by the individual that said that and couldn't wait to find her so I could dispute what her doctor said, I was going to advise her to get another doctor. I know there is alot of hype here about TNBC but I have to say I disagree with alot of the hype...TN is aggressive because it is often grade 3 and because there is not alot of targeted treatment that is why they say it's so bad. Funny on my pathology report back 23 years ago, yep you heard me, they said by cancer was not hormone receptive. Because I had no nodes, chemo was not used then, with lumpectomy I had radiation and that was it...I never even went to an oncologist because they told me "you don't have to because you no longer have cancer" so you can say I was way undertreated but 23 years ago that's how they treated breast cancer that was non-invasive. I remember going back to my surgeon for a 5 year follow-up and him telling me with my type of cancer the chances of it coming back now was very slight and congradulating me and never saw him again. So maybe even back then there was some knowledge of TN. Triple Negative IS NOT A DEATH SENTENCE I LOVE THE FACT THAT I DID NOT HAVE TO TAKE TAMOX, yes and back 23 years ago tamox was the new rage and my doctor told me it's not for you. I believe that all triple negative breast cancer is not the same and some TN's are most definitely CURABLE. Alot of you ladies are looking for the majic bullet...but if you are stage one or two your chances are fabulous and stage three ladies, OMG so many ladies that go on to never have cancer again. I know one who is now 86 and she worked for Reach for Recovery when I was first diagnosed and then she was over 20 years out. She was stage 3 with multiple nodes. Back then it was just breast cancer so she does not know if she was TN but assumes she was because tamox was never suggested to her as a preventative when it was first discovered and she was on top of all the new research.

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2010

    I think TNBC is blown out of proportion in the media.  Sure it's aggressive and, yes, there are no targeted therapies at the moment, but many many women will go on to live to a ripe old age. My onc told me my prognosis was good and I'm sticking to that. I just finished TC x4 on Feb 8th as extra insurance. 

  • nonijones333
    nonijones333 Member Posts: 120
    edited February 2010

    That is absolutely correct...You will see the dear sister here who even though she was early stage has mets but if stage 1 or 2 your doctor gave you great odds, LISTEN, LISTEN, if you come to these boards the ones here are newly diagnosed or are here for support, so yes you are going to hear the contrary to what you were told, but that one individual who said that nodes and staging doesn't matter is totally false information and if you listen to her why not just jump off a bridge. THERE IS HOPE LADIES. That is why I am here. Not many of us long survivors come back and believe me I know plenty and have many stories of hope.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Yes, there is an article that talks about TN spreading irrespective of nodes. I will try and located it, but it is a VERY involved article. In fact, I'll just Copy/Paste that section.

  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    It was on the triple negatives are different thread here...just confused about how one article makes the rest of the entire medical field incorrect.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

         
    outcome in TNBC
    survival
    TNBC accounts for a disproportionate number of BC deaths;
    the majority of studies indicate a negative impact of a TN (on
    the basis of data of thousands of patients) or BL (defined by
    a few molecular studies) phenotype on patient prognosis [17,
    24, 37, 39, 44, 60–62]. In numerous randomized trials, patients
    with TN [63, 64] or BL [65] tumors treated by anthracyclines
    and taxanes experience a significantly decreased survival
    compared with patients with other tumor types. Importantly,
    the prognostic effect of TNBC is independent of poor grade,
    nodal status, tumor size and treatment [44, 63]. The
    aggressiveness of TNBC is further indicated by the fact that (i)
    the peak risk of recurrence occurs within the first 3 years after
    initial treatment of the disease with the majority of deaths
    occurring in the first 5 years [18, 42] and (ii) after diagnosis of
    metastatic disease, a significantly shorter survival was observed
    in both BL [28] and TNBC [42, 45]. Conversely, the risk for late
    recurrences (i.e. beyond 5 years of diagnosis) is decreased by
    50% compared with HR-positive disease [27]. However,
    differences between TNBC and non-TNBC regarding overall
    survival (OS) wear off at 10 years of follow-up.
    Cheang et al. recently hypothesized that the negative impact
    of TNBC on survival may be affected only by the subgroup of
    basal tumors within the TNBC group. Using the five-marker
    method described above, patients with BL TNBC had
    significantly decreased BC-specific OS compared with patients
    with the remaining non-basal TNBC; among patients treated by
    adjuvant anthracycline-based chemotherapy, the addition of
    basal markers allowed for identification of a subgroup with
    a significantly increased risk of relapse [25, 66]. These results
    are in line with other studies [27], particularly in node-negative
    patients [17].

    Above is from the following article:

    Annals of Oncology

    Triple-negative breast cancer—current status and
    future directions

  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    Hmm...going to print this off and show my onc. next Tuesday when I see him...at this point I'm not freaking yet....one study..is just that...

  • MBJ
    MBJ Member Posts: 4,352
    edited February 2010

    I was told the same thing by my doctors.  What I have done is I have taken my health into my own hands: read The China Study, look into The Budwig Protocal.  These are the healthy lifestyle changes in addtion to surgery & chemo that will prolong your life.  I have given up dairy as this is the only food I was eating that could have possibly done me harm.  I have lost 20 pounds.  I am doing great with chemo due to food choices and alternative treatments.  I am going to do the Budwig Protocol which will take much discipline, but it just may save my life so for me it's worth it.  When I got this diagnosis, everyone told me: be proactive in your care.  Do your research. Ask Questions.  There is alot to learn and chemo or surgery alone never "cured" anyone.  It's up to you to do the rest.

    Best of luck to you and a big hug.  You can get through this!

    Mary

  • MBJ
    MBJ Member Posts: 4,352
    edited February 2010

    It's my understanding that for most tnbc TC is the best and stay away from the A as it is unnecessary and brutal.

  • justpayton1
    justpayton1 Member Posts: 786
    edited February 2010

    MBJ- I had the A. Did you?

    I am finding myself very confused over the different chemo.

    I had dose dense 4X AC and then 4X Taxol each followed w/ a shot of neulasta.

    I am 3- and BRCA 1

  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    I had a lumpectomy then 4 dd ac and 4 dd taxol then 32 rads..7 of which were boosts to the tumor bed..I feel that I hit this with the big guns...I tolerated everything every well...I have changed my eating habits..eating more fruits and veggies.  I have gained 15 pounds though.  I think I'm at a normal weight for me now ..MY BMI is still at 24. ..I also take vit d with calcium plus Vit d 3 separately..I guess that Vit d 3 is good for when the cancer cells try to stick together to form a tumor that the d3 gets in there and breaks them up..!  I hope so! 

  • justpayton1
    justpayton1 Member Posts: 786
    edited February 2010
    I had the dose dense first, then left masectomy, then 33 rads plus 5 boosts but sometimes I wonder if they left out the kitchen sink Smile I am trying to eat lots of veggies and fruits also plus exercise. I am trying to lose my chemo weight.
  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    LOL..justpayton1..they probably threw the sink in when you weren't looking.

    OK..I'm  trying to wrap my chemo brain around this study...so my onc tells me that with chemo and rads I had a 12% change of cancer recurring..on life math breast cancer with therapy it has me at 11% chance of dying within the next 15 years (not just of cancer..other things too)...so..my onc and this life math thing is wrong?  When I go to the life math thing, put in maybe one lymph node involved it goes up to 13%..Is that all wrong?  What is this lifemath based on?  It is supposed to be based on history too..I guess I'm just freaking here a little.

    So this study says that no matter how many nodes or size of a tumor our outcome is the same?  Hopefully this outcome is not too awfully bad..this would be good news for the larger tumor, node positive women..and I'm all for that too!  Sorry to ramble..just freaking..

    I've always been concerned about this TN thing but trying to be fairly positive about it too

  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    And another thing...hopefully you don't mind the rambling..looking at that "study"..well it is what it is...some things are obviously true..with TN it doesn't seem to matter what stage you are..they throw the kitchen sink at you...payton..I had the same treatment as you but we are different stages..so yeah...things are the same...if you are TN..you get everything..which is a good thing.. no mattter what stage.but..at the same point..this is one study..WE were not in that study......and who knows what years they based this on...there are things for us coming out..right now...just like I had AC/taxol..now taxotere is the thing..and it hasn't even been a year..a co-worker had 4 ac only...6 years ago..and she is fine...more than fine...I guess you just have to put these freaking studies..away..and just go on..If you feel good and you have done everything you can..don't waste time on freaking out about studies..we have too much to LIVE for.

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