ALL MY TRIPLE NEG SISTERS!

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nosurrender
nosurrender Member Posts: 2,019
edited June 2014 in Triple-Negative Breast Cancer
ALL MY TRIPLE NEG SISTERS!
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  • nosurrender
    nosurrender Member Posts: 2,019
    edited September 2008
    Seven years ago I was told I had the "bad" cancer... the one that had the poorer prognosis and the one that people really can't beat.
    Seven years ago today.

    Back then they didn't have the studies that are out now. In fact, I was given what would be considered substandard chemo for our aggressive, nasty disease.
    But it worked.

    We are given many negative percentage points... I am here to tell you that there are people who wind up on the positive side of those negative numbers.

    Don't despair. They are finding out more and more everyday. Women are surviving triple negative now like never before. And it still holds true, chemo works better on this type of cancer than on its ER/PR + cousin.

    I was lucky. But I was also pro-active. We may not be able to take a drug post treatment to protect us, but there are other things we can do- things I have done.

    I dropped my chemo weight
    I cut my diet to under 30 grams of fat a day
    I exercise at least 5 times a week
    I sprinkle flax seeds on my cereal every morning
    I rarely eat meat

    Did these things help me beat a recurrence for triple negative for seven years? I don't know. But I sure a hell am not going to stop.

    I love the unity we have. When I was first diagnosed I felt lost in a sea of ER/PR Positive women who seemed to be getting good news every day on TV- there would be a special report about a breakthrough in cancer- I would wait anxiously through the commercials and the weather report only to hear, "This wonder drug only works for women with hormone sensitive breast cancer." I have since kept throwable objects out of reach of the television.

    Now, seven years later, the breakthroughs are being reported about us. Our voices are being heard. And for as long as I live I will be one of the loudest voices screaming for better research and treatments for all of my triple negative sisters.

    I made it seven years so far. People DO survive this.

    With solidarity and lots of love,
    Gina
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  • pinoideae
    pinoideae Member Posts: 1,271
    edited September 2008

    Yay Gina! And I wish you 7 times 7 more years!

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  • maxgirl
    maxgirl Member Posts: 407
    edited September 2008

    Gina -- It's always so heartening to read stories like yours -- thank you so, so much for posting.

    I'm trying to follow a regimen like yours (apparently my system does not like flax seed).  I also upped my intake of fruits and vegetables, especially blueberries, and use walnuts or almonds on my morning cereal.

     I talked to a nutritionist at Kaiser who wanted me to be eating 50 grams of fat a day.  I don't think so!

    Here's hoping our home-grown clinical trial has good results!

    Max

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited September 2008

    Dear Gina,

    Thanks for coming here and posting such a positive, upbeat message. It's true that still today triple negative women hear and read lots of negative, discouraging statistics, and only rarely are given straws to grasp.  The result is often that we despair and -- sometimes -- feel ready to give up.

    That's why it's so essential that women with a diagnosis of triple negative BC who have gone through treatment and emerged on the other side come here to share their stories of victory. In so doing, they become a source of hope for those of us still going through the tunnel. As I said to my breast surgeon when he was so negative during the first phase of my chemotherapy: "Why do you take away my hope? Don't you realize that hope is all I have at this point?"

    You have my gratitude for giving hope to those who get so little and need it so badly.

    Hugs,

    Annie Camel Boob

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  • Boo46
    Boo46 Member Posts: 539
    edited September 2008

    Hello Dear Gina,

    So nice to see you dropping in. I will always remember your kind and calming post to me when I first found this sight.

    I think of you often and I'm so glad you are doing well.

    Had my 2 year anniversary in June and am still dancing with NED.

    Hugs to you and all my TN sisters,

    Sue

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited September 2008

    Hey!

    Thank you all so much.

    I wanted to also share that my sister will be at four years in December and she is also a triple neg and didn't do chemo! (don't even get me started on THAT. I have been worried to death for almost four years over that decision.) But, in case you already don't know, the longer you go without a triple neg recurrence, the odds are it won't come back.

    Love and big hugs to all my positively negative sisters!

    g 

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  • drcrisc
    drcrisc Member Posts: 836
    edited September 2008

    Gina,

    That was just what I needed tonight.  I was unable to complete my rounds with Taxotere because it was causing me huge symptoms of neuropathy (at a third of the dose no less!) and my onc was afraid if we continued I would have permanent damage.  But I have been slightly concerned because I know it has shown good results for us.  I am actually having 2 additional rounds of Carboplatin and Cytoxan instead (had 4 already). 

    And I had heard that 5 years was an important maker for triple negs - the chance of a recurrence drops somewhat significantly if you make it past the 5 year mark without one. 

    Congrats to you and your sister!!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2008

    So glad you stop by...you are one of our roll models.  Thanks for being a inspiration to all of us.

    Flalady

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited September 2008

    Yea Gina! That's GREAT! I just passed my 3-year mark and feel confident I will live many, many more years! Be well all of you!!!!

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  • cmb35
    cmb35 Member Posts: 1,106
    edited September 2008

    Gina - You rock!

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  • 6cooks
    6cooks Member Posts: 42
    edited September 2008

    Hey Gina,

    I have read this site many times but only recently discovered this Triple Negative forum. I read your post and it really lifted my spirits. I am 40 yrs old have 4 teenagers and just started my chemo for trip neg last month. I have had 1 dose of Taxotere/Avastin (too many SE, I had to stop the clinical trial) and 3 doses of Taxol. I have 6 Taxol's to go then 4 A/C. I have read so much negative about triple negative, it is so good to hear some positive. I will definitely be on here alot. Thanks for listening

    Marci

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited September 2008

    Hey there!

    Marci, there is a lot of HOPE out there. Don't let the docs and the stats get you down. I truly believe since they can't write us a prescription like they can for ER/PR+ women, that they don't know what to say except "there is nothing we can give you..." But remember- chemo WORKS BETTER on TNs than it does on ER/PR + cancers. You are getting good stuff!

    Colleen, Ravdeb, Fla, Cristine, Boo, Annie, Max and Summer, we are strong! Like the saying goes... if you don't quit you can never fail... as long as we keep up our fight and making sure our voices are heard, there will be more and more research and soon this will be a very positive disease.

    Big Hugs,

    Love

    g 

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  • joyagain
    joyagain Member Posts: 2
    edited September 2008

    Fairly new to this whole thing. Diagnosed with Stage 3, TN mid May. Cancer center wanted me to participate in a clinical trial but my insurance company said no way. Thought I was handling it pretty well and taking small steps to offset news of the disease and some of the effects of chemo and maintain a positive attitude. Tumor was shrinking after first two doses of AC chemo. Then I started finding out all the "bad stuff" about triple negative cancer and the tumor decided to get larger between the second and third dose of chem. Tumor becoming resistant to chemo or forming scar tissue? Not known at the moment. For the last month, I have been drowning in negativity and unable to see a way forward. Wasn't thrilled with one suggested course of treatment which consisted of moving up the surgery to deterrnine what was happening. Requested a second opinion. Talked with one of the center's top onc and he recommended pursuing a different course of action which involved more tests to try and determine what was happening. Like this treatment plan but seems that two of the top guys disagree. My case will be presented to the tumor board tomorrow and I will hopefully know more by Friday. Hope that they decide to go with the treatment plan that I have chosen. Do not really have the energy to battle over this and hope I do not have to do so.

    The new onc did manage to give me some of the more positive news about triple negative cancer like the fact that the longer we go without a recurrence the more likely it won't come back and some research that looks promising.  More upbeat then I have been in the last month or so. Need to be able to look forward with hope. Thanks nosurrender for adding to the positives.  

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  • pas
    pas Member Posts: 55
    edited September 2008

    Thanks for a great post!  I am a 3 year(7/05) triple negative survivor....I was diagnosed at 42 and my child was 4 at the time.  I read all the bad news and thought I'd never see her start kindergarten.  She's in second grade now.  I feel fantastic.  I still need to work on the weight and less fat in the diet but reading your post has got me motivated. 

     Again, thanks for posting, it was very uplifting for me! 

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  • Maryiz
    Maryiz Member Posts: 975
    edited September 2008

    Triple Negatives, there is a post somewhere about a vaccine for triple negatives that looks hopeful.  See if you can find it.  It gives a lot of hope. Maryiz

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  • learning_to_fly
    learning_to_fly Member Posts: 6
    edited September 2008

    Great to hear your story Gina. My wife was Dx TN early last year. Around 20 months and going ... hoping to get past the 2-3 year hump. She is a fighter much like everyone here. Thanks for the heartening reminder that this can be beaten.

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  • Jacquio
    Jacquio Member Posts: 39
    edited September 2008

    Here is the post about the vaccine:

    For months, Dr. Joseph Baar, director of breast cancer research at University Hospitals Case Medical Center and medical director of UH's Center for Survivors of Breast Cancer, has been waiting to get approved for funding to test a vaccine for early-stage triple-negative breast cancer to help fight recurrence....

     http://www.cleveland.com/living/plaindealer/index.ssf?/base/living-0/1220949186108841.xml&coll=2

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  • KPolasek
    KPolasek Member Posts: 184
    edited September 2008

    I am so glad to read positive things about TNB .... I have my "up" days and my "down" days .... and recently came out of a 3 week "down ..." ... Thank you Gina and others for your encouragement.  Thank you, thank you, thank you!!!!

    Blessings,

    Kay

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  • debk55
    debk55 Member Posts: 108
    edited September 2008

    HI, 

    I have just gotten the report that I am triple negative. I picked up the report from the medical records dept at my hopsital to go to the Surgeons office yesterday and the final report had just came back so, I did not talk to my Dr about it he does not even know yet. I AM GOING TO THE BREAST SURGEON MONDAY !!  THANK GOD.   I am Stage 2  grade 3 triple negative. The mass is almost 3cm. My dr said i could opt for lumpectomy or mastectomy and if there were no nodes involved I probably would not have to have chemo but, that was before the triple neg results were in.  It looks like alot of you girls have had chemo even with out lode involvment. Is that because this can be more aggressive??   I am trying to stay positive and not worry much but this kinda took the wind out of me.. I did get good news my bone scan came back clear yesterday!!!!  :)   Any info or insights would be great. 

    Thanks so much to all of you this web site has been a god send, 

    Deb 

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited September 2008

    Hey Gina, our love, you are going to be an old woman in a rest home, in her nineties, calling a sweet nurse "Mama".  I just know it.

    You are a treasure!

    Congratulations on your 7,  YIPPPEEEE!

    Hugs, always, Shirlann

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited September 2008

    Gina - thank you for the good news and a positive attitude. It's so easy to lose sight of both those things.

    Happy anniversary.

    susan 

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited September 2008

    Hi debk55, yes, it is a more aggressive cancer, and they pretty much recommend chemo for the TriNegs, but the GOOD NEWS is, if you get to the 2 to 3 year point, our recurrence/metastasis rate just collapeses, while the other BC types just slowly drop.  This is wonderful, and 2 years go by real fast.

    I am 10 years post treatment, and our dear Gina, is on a roll, we are a strong, stubborn bunch, us TriNegs!  

    Gentle hugs, Shirlann

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

    My understanding, Gina, is that now that you are 5 years out, you have a much better prognosis than er/pr+ sisters!  Congrats!

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  • Lee27
    Lee27 Member Posts: 69
    edited September 2008

    Keep your chin up. I am also TN, Stage 2, Grade 3, large tumor like yours.  Kick butt! I went through 10months of treatments in 2007 with my family 930+miles away from me...6rounds of chemo (tumor shrunk so I had a lumpec) , 2 surgery's 2 wks apart,and then 31 rads.  Still kicking high. :-)  Moved back across the country and started a new Support Group at home.  It is only for people that have experienced some kind of cancer. Nothing was here for those completed with treatments. We will help support others going through the journey.  Positive energy coming your way! 

    Lee 27 

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  • dhettish
    dhettish Member Posts: 501
    edited September 2008

    Hey Gina,

    Thanks for the positive update. I have read that our chance of recurrence greatly drops after 3 years and then down to pratically nothing after 5 years. One report said TN could count themselves actually CURED after 7 years. Thanks for the hope. I have one year down and many more to enjoy.

    Debbie

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  • Roya
    Roya Member Posts: 346
    edited September 2008

    Hi Gina and BC Sisters,

    Gina, thank you s much for sharing your great news and for all the positive info and update! 

    Deb, if you are triple negative you might consider chemo.  Triple neg is very aggressive and should be treated as such.  Just because there is no node involement does not mean that the cancer cells are not lurking.  They will also travel in the circulatory system and any other way that they can.  If there is even one tiny microscopic cancer cell anywhere in your body, it can settle in and start the process all over again.  I had no node involvment either and clean margins but the first thing my doc told me after my lumpectomy was that I definitely should add chemo to the battle then radiation following that!

    Trust me on this......if your doc says that you do not need chemo, then pleeeeeeze get a 2nd opinion!

    Gina, thanks again for starting this very uplifting thread.

    Roya

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  • sueps
    sueps Member Posts: 2,266
    edited September 2008

    Hello dear sisters,

    I really needed to read this post tonight...I am one year since dx ...can you tell me when I can count from...mast/chemo ...or can I count one year now....thx so much for this post Gina xxx 

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  • vicliz
    vicliz Member Posts: 159
    edited September 2008

    Hey Sisters,

    16 years and counting!!!!

    Vicki

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  • March907
    March907 Member Posts: 11
    edited September 2008

    Hi,  I did all that stuff too....lost 30 lbs, flax seed daily, exercise, run, less fat, veggies and fruit.  But the triple negative cancer came back within five months.  This is shitty.  Who cares?  I am ranting and angry.   Why can't I have 16 years? 

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  • Msklapkin
    Msklapkin Member Posts: 208
    edited September 2008

    March

    You can have 16 years! go for treatment now for your mets and live a long and happy life.  I know many people on these boards who are on continued treatment but concentrate on living!

    you can too, 

    Hope the ranting helped you

    Love and light

    susan

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