ALL MY TRIPLE NEG SISTERS!

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  • Wonder444
    Wonder444 Member Posts: 12
    edited December 2010

    Hello Gina . . . just wanted to say how happy I am for your seven year mark.  You are correct, there is hope for us all if not beating this disease  but living with it also.  I too am a triple negative with a very aggressive type BC.  In January I will be twenty-one years out  and I am still here.  Not to say that I haven't had problems since early on but I have been blessed. Sometimes I am reluctant to share this information with others.  Believe you can understand what my reasoning is for that.  But needed to share this evening.   I intend to keeping on keeping on.  Happy Holidays to you and yours. Smile

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  • echo-on-the-lake
    echo-on-the-lake Member Posts: 14
    edited January 2011

    Just wanted to thank everyone here for posting such positive news!  I am approaching my 2nd year anniversary (March 10---the day of my surgery!) and I'm getting extemely nervous as we all know that most recurrences happen between the 2nd and 3rd year.

    I have a Caribbean cruise planned for the end of February (1st one ever!) and I'm really hoping all my tests come back okay so that I"ll be able to go.  

    To all the long-term survivors I just want to say, "thanks so very much for (1) remembering your sisters, especially us newbies, and (2) for taking time out of your busy schedules to offer hope to the rest of us". 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Well, thought I'd send you off on your wonderful cruise with a bit more positivity.  Actually, according to my onc and another I have spoken with, the peak time for recurrences is from end of chemo to year two - by year three it has peaked and begins to go downward.  I too am close on your heels -my original surgery was 3/26/09, but I use my reexcision date of 4/8/09 as my surgical date,since that's the date they removed my two margins with dcis in them.  I try to console my self with those stats - when I hit those dark spots, which we all do!  Of course, none of this much matters if it doesn't choose to play within the "rules".

    Have a wonderful cruise and a forever healthy life!

    Linda

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  • minxie
    minxie Member Posts: 484
    edited January 2011

    LRM216, thanks for this info. I was diagnosed in Deb '08 so I'm at the two year mark - and was hoping to breathe just a wee bit easier... if such a thing were possible. My original onc (since retired) said that getting to the 2 year mark was a crucial time.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Don't you just hate it, Minxie.  We get hit with this disease and then have to walk on eggshells for the rest of our lives.  I try not to feel this way - but I am not totally successful to date!  Congrats on two years!  I hope you have at least 80 more!!!!

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  • echo-on-the-lake
    echo-on-the-lake Member Posts: 14
    edited January 2011

    Basically we are saying pretty much the same. You are right, LRM216, in that a lot of recurrences (some studies say as much as half) happen between the one-and-half to 2 year mark. However, the time from your 2nd anniversary until you reach your 3rd anniversary is just as critical. Our risk does not go down until after our 3rd anniversary.I have read multiple studies on this subject and every one says at least 3 years before the percentage of a recurrence goes down. After 5 years it drops tremendously.

    My oncologist, who was the Asst Professor at Karmanos Cancer Insitutue here in MI, even said that "this is the year we have to get you thru". 

    I don't post this to discourage anyone, but to remind them to continue to be extra vigilant during that 2nd and 3rd year and to report anything that they notice to their oncologist right away.

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  • Titan
    Titan Member Posts: 2,956
    edited January 2011

    Ok..according to my dog eared chart..based on 2,959 Tri negs...peak recocurrence is in the first 12 months after surgery...after that it starts dropping..but still not as good as the er-pr ladies...the first time we are equal with them is at 30 months out (2 1/2 years). at 30 months out our risk is below the er-pr positive ladies.

    So yes..echo..your onc is right..about year 2-3.. ...the risk spikes a little between 4 and 5 years (but still well below the er-pr positive ladies).. at 6 years out our risk is very, very low.  This study was done between 2003 -2005...and who knows what treatments these ladies had...probably not even a taxane...

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  • Luv2sing
    Luv2sing Member Posts: 145
    edited January 2011

    Jan. 23rd will be my 2 year mark and so far all I'm dealing with are side effects from chemo and radiation.  I'm still doing x-rays every 6 months because there are spots that still light up.  A lot of arthritis and I can't wear my 6 inch heels (right now) although I did tip out in 4 inch heels today, which I kicked off immediately upon walking thru the front door.  Feet are burning now.  Titan posted how these studies were done between 2003-2005 and may not have had the treatments that are available to us now, so I'm remaining optimistic and taking each day as it comes.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Echo -

    Perhaps I did not make myself clear in my post, but I did mean AFTER completion of the third year, but after rereading the post, I can see how some may have thought I meant AT year 3.  Sorry for any confusion.  I even wonder about that though, as there are a few gals over on the TNBC board that have recurred after 4 years and one at 8 years.  While I realize there will always be exceptions to every rule, still just reinforces my belief that the whole thing concerning recurrence/progression is merely a crap shoot.  I hate this disease with a passion.  

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Luv2sing -

    6 inch heels!!!  Just the mere thought has sent me into pangs of pain!!!  I wouldn't even want to attempt the 4 inch pair. I'm thrilled if my feet don't hurt me while wearing flats! 

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  • Luv2sing
    Luv2sing Member Posts: 145
    edited January 2011

    LRM216- You got me laughing early in the day!  I can wear the heels all day as long as I don't have to do too much walking, but for reasons of practicality I usually wear low heels or flats.  I would prefer to be back in heels though, they always make me feel extra-feminine.  I have a room full of shoes that have been retired for now, and when I have the opportunity to attend certain functions I wear them and take along a pair of comfy flats to slip on for the walk to and from the car.

    As for your other post about the reoccurence thing ... I didn't want to share but recently a very dear friend passed away and she had been dealing with TNBC for more than 5 years. She was my source of inspiration and information.  She tried every treatment available.  When we thought she made it passed that 'window' and was out of the woods is when it came back more aggressive than ever.  As you said, it's a crap shoot.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Luv2sing:

    I am so sorry to hear about your friend.  What a terrible loss for you and for her family.

    That is exactly why I feel from the moment we finish our treatments - those damn dice have been rolled.  We,of course, are on shakier ground by not having any targeted therapies, as the hormone positive gals have to resort to, but I also realize that even some of them see progression and recurrences so soon after treatment, and they too see many deaths - even with this supposedly "better" cancer. 

    The total downside to this whole thing is that this rotten disease follows no rules whatsoever - it comes into our lives stealthily and forever leaves it's shadow just two steps behind us.  It oftentimes amazes me just how strong those of us fighting this beast really are - in that we attempt, and for the most part, succeed, in living our daily lives with this monkey on our back. 

    Anyway - to a brighter side - glad I could make you laugh!  I envy your ability to wear those shoes - even if you only sit down in them!!!  You go,girl!

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  • Luv2sing
    Luv2sing Member Posts: 145
    edited January 2011
    Kiss  Take care Sweetie!
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  • echo-on-the-lake
    echo-on-the-lake Member Posts: 14
    edited January 2011
    CONGRATULATIONS, Luv2sing on your 2nd year anniversary!!!  May you have a lifetime of cancer-free anniversaries!   Smile
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  • lindaa
    lindaa Member Posts: 119
    edited January 2011

    This thread was started in 2008 but is filled with good stories for TN.  I hope more recent survivors will come on and share.  I am still in treatment, with progression to rib.  trying to find a chemo that works.  so far - carbo/taxol/avastin; DD A/C 3x then stopped, now on xlempra and xeloda.  My attitude started off upbeat but has dropped a lot. I've fought off 2 infections including bad port whichis still healing (repacked daily), and I feel this contributed to my chemo slowing down on me. Onc says no, but I could feel myself weakening. These stories remind me that I still have a shot at this.  Thanks.

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  • echo-on-the-lake
    echo-on-the-lake Member Posts: 14
    edited January 2011

    Hang in there lindaa!!  I am so sorry that you are having to go thru all this.  Hoping that this next combination of drugs will do the trick for you. 

    With all the different threads going on, it's hard for people to keep up with posting on more than a few at a time. And people tend to have a favorite or two that they only post on. I know I have read many, many posts from survivors 4 and 5 yrs out. Please keep in mind too, that a great many long-term survivors have 'moved on' with their life and don't come back here to post at all. 

    Perhaps you might find a thread about the new drugs you're going to be taking.

    Stay strong....don't give up! They WILL find something that'll work!

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited January 2011

    Hanging in there ladies! Things will work out keep fighting and keep the faith.

    Treatment ends for me on THURSDAY! I am so scared and worried. I plan on uping my excerise once the chemo wears off.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited January 2011

    Hanging in there ladies! Things will work out keep fighting and keep the faith.

    Treatment ends for me on THURSDAY! I am so scared and worried. I plan on uping my excerise once the chemo wears off.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited January 2011

    Fighter_34:

    Yep - same with me - as soon as my treatment was over, I was going "healthy" and working out on a consistent basis, eating well, etc.

    That was a year and a half ago and I haven't lost a pound!  Hope your plan is considerably more successful than mine was!  All the best -

    Linda 

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited January 2011

    Thanks for the encourgement!Tongue out LOLOL

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited January 2011

    What about maintenance CHEMO? Meaning for every year you are out you rec'd one light fusion half of what you would normally get. Thinking out of the box here...

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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2011

    FIghter:

    You are a lot younger and more motivated than me!  Between working full time, (am a widow, so basically the "man" of the family!), and raise a 15 yr. old grand-daughter with a full academic and social schedule - so that's about all the "exercise" I can fit in!  You'll do fine - I'll be your cheerleader.

    Re the maintenance chemo - I thought of that too and asked my onc.  She said it wasn't anything they would do as chemo has to work in cycles of the cancer cells, otherwise, it would literally destroy us.  There is a big difference between knowing there are cancer cells to kill and not knowing if there are any alive and multiplying.  Even if they are there and lying dormant until they decide they are going to settle in and multiply - the chemo would not kill them as they would not be in their multiplying stage.  Same principle as why they don't do scans unless there are symptoms.  They cannot stop it from happening - only deal with it once they know it's there, or, as we all sadly know only too well - hope to deal with it.  Of course, she said it all far more scientifically than I just did, but I think you can get the gist of it.

    Linda

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  • lindaa
    lindaa Member Posts: 119
    edited February 2011

    Congrats Fighter on finishing!  I'm with you on the maint idea.  Wouldn't it be better to have a brief dose of chemo rather than risk a recur?  Sometimes i can't figure all these treatment options out. 

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  • RachelKa
    RachelKa Member Posts: 174
    edited February 2011

    Wow Gina,

    You've  kept this thread going a long time with your positive story and outlook. I guess it goes to show, positive draws positive. I'm with you on doing the healthy things like cutting way, way back on meat and cheese though it's a personal choice.We have so few choices after chemo, so we do what else we  can on our own.  I just read that blueberries and vitamin d appear to target triple negative. I've been a writer for 25 years, mainly health, and so I recently launched a  cancer website - guess I have my work cut out for me now :)

     There's content for people of all ribbon colors, but lots of breast cancer and have done a little on TN. If you want to check out my site, it's www.1UpOnCancer.com

     Be strong and well  Triple Pink Ladies!

    Rachel

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  • RachelKa
    RachelKa Member Posts: 174
    edited February 2011

    LRM216 and all you other ladies fighting weight gain:


    I've gained 25 pounds this year. Am heavier than the day before my daughter was born. I eat very low fat, and for the most part, only good carbs, though I admit I drink a bit of wine and about once a week I splurge on not great foods. But not enough that I feel I should be gaining this much. I recently heard that our metabolism slows down for 2 or 3 years after  chemo.

    Rachel

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  • Luv2sing
    Luv2sing Member Posts: 145
    edited March 2011

    Hey Rachel!!!!

    Just happened to check in on this thread and recognized the website link, which BTW is a very nice site.  I'll be chatting with you and checking back here too.

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  • yizbieta
    yizbieta Member Posts: 100
    edited March 2011

    Nice to be a part of this....

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  • TexasKaren
    TexasKaren Member Posts: 572
    edited April 2011

    I am a three year survivor of TNBC, 2007-2010, when I was diagnosed with mets to bone and became Stage IV.  I read all the information on TNBC and alcohol, caffeine, diet, exercise, etc, but I let myself slide after the first 18 months and went back to bad habits; put on 30 pounds, drinking nightly (just one rum and coke), stopped exercising, etc.  Could I have put off the recurrence if I had stuck to "the healthy program"?  I don't know... I don't blame myself, but I do believe that it would have had a better outcome.  Maybe I could have gotten out to 5 years without recurrence.   Anyway, I'm back "on the program" now, and feeling great; even while on chemo again.  I will continue to fight the fight, and believe that my time on earth is not limited by this disease, but is in the hands of God.  The TNBC is a fickle beast... some get much time, and others less, but I just wanted to say that being healthy in mind, body and spirit is key to fighting this disease.   We are all sisters in this fight.

    I would also recommend the TNBCFOUNDATION.ORG website for a lot of good information.

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  • TexasKaren
    TexasKaren Member Posts: 572
    edited April 2011

    There is no such thing as 'maintenance' chemo.  If the chemo you were on did not 'kill' all the cells, then the ones left circulating in your body will mutate and not be receptive to that chemo agent anymore.  Hence, why people with recurrent disease go from one therapy to another; when they stop working, try something else.  It then truly does becomes "maintenance' therapy, as we will be on one form of chemo or another for the rest of our lives.  As much as I hate chemo, I will do whatever it takes until I can take no more. 

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  • yizbieta
    yizbieta Member Posts: 100
    edited June 2011

    Hi ALL! I can't remember if I have posted anything here before (still in T/C, chemo treatment- number five this Friday and number six on June 24th, the last one!!, going for radiation after this is done, also may have to have reexcision surgery for low margins at the site, though only dcis was found there...near the main tumor site ). Sooooooo I am reading about all the good and bad that people are experiencing with this triple negative stuff. It is good to hear both- I like reality. I still hve trouble believing I have it!

    Good to be on board! Thanks everyone for your honesty!!

    Elizabeth

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