6 years clean now mets to lungs...

Kerrilyn
Kerrilyn Member Posts: 41
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

For a month and a half I have been looking through the message boards but not writing anything. I decided to actually write today.  So many of you are so strong and it makes me feel good to read so many of these posts.

I am 39, mother of 2 boys age 22 years( i know do the math,lol) and 6 years. First diagnosis when I was breastfeeding my 6 year old, he quit feeding cold turkey, as soon as my breasts went back to normal I felt a large lump. Did the rounds of docs, within 2 weeks bilateral mastectomy(my choice to take the other breast) 2/19 positive nodes. Did chemo AC-T, and had been fine ever since, until.........

At the end of beginining of August 2009 I was doing yard work and the next day I felt a lump by my clavicle. It was sore so i wasnt thinking the worst yet, i thought i pulled a muscle or developed scar tissue from my port( my scar from port goes directly over lump).  Waited 2 weeks got a little bigger did the rounds of docs again, had a PE scan done......mets to supraclavicular lymph node and numerous lung nodules( had lung wedge biopsy to confirm same cancer)..Other than me feeling the lump in my breast and lump in my lymph node, I have never had any symptoms of anything. IT almost makes it hard to beleve.  I am the most healthy sick person I know.

Now I will start chemo on October 12 Gemcitabine/Carboplatin, I am in the phase 3 PARP inhibitor study. I find out TODAY which arm of the study I am in, whether I get parp right away or if I get it once I progress. Having alittle anxiety today about that. I am prime specimin for the study....triple negative.....BRCA1......with mets.....I just hope it does wonderrs for me and all the other participants

I am so ready to kick cancers ass, breast cancer took my mom at a young age, dont want to do that to my kids!!!!!  I guess this is a welcome me letter....

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Comments

  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited October 2009

    Awww Kerrilyn ... I am sorry you are hear but welcome.    What a punch in the nose it is when they tell you that you have mets.    Sounds like you are in a great study and I am praying that it get the parp right away and it kicks some butt.   As you know, lots of us stage IV girls lead a very good quality of life.   I look at it this way.  i don't have a terminal disease I know have a chronic disease.   You will have to take some drugs and gets tests, scans, etc forever.  

    Welcome to the club.  I am sorry you are here but you are in a wonderful place for support and information.    

    (((hugs)))

    Jennifer

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  • Kerrilyn
    Kerrilyn Member Posts: 41
    edited October 2009

    Thanks Jennifer.

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  • chiquita
    chiquita Member Posts: 135
    edited October 2009

    Kerrilyn I will pray for you, God Bless You and give you a long life.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited October 2009

    You go kick some cancer butt Kerrilyn. I am sorry that you have to fight the beast again, but this time it will stay away for good.

    Hugs and Prayers,

    Lexi

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  • camdenandmo
    camdenandmo Member Posts: 112
    edited October 2009

    I am sorry you are here, but welcome.

    Stacie 

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  • cp418
    cp418 Member Posts: 7,079
    edited October 2009

    Kerrilyn - sending you strength and hugs - - Joann

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  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited October 2009

    Hope you kick cancers *ss!!!!!

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  • clemson93
    clemson93 Member Posts: 575
    edited October 2009

    Kerrilyn,

    I am so sorry that you had to join us.  We are almost the same age (I am 38) and I also have young children.  I know exactly how you feel about being scared to leave your little ones.  Stay strong and just know that there are a lot of drugs to treat breast cancer.  I guess if you have to have cancer, breast cancer is the gold standard :)  Good luck with the PARP study.

    Susan

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited October 2009

    Kerilynn sorry to hear of your dx but sounds like you are getting into a very good trial.  These PARP trials they are hoping will open up a door for triple negs like herceptin did for HER2 pos.  I hope the trial goes good and that you continue to look like the most healthy sick person out there.  I am 3 years into my mets dx and I still get people saying they can't believe I have cancer let alone stage IV, so just goes to show you can do this for a very long time!

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  • JerseyMom
    JerseyMom Member Posts: 46
    edited October 2009

    You were clean for 61/2 years from a triple negative BC and then a recurrence? I thought you are home free after 5yrs with triple negative? Sorry to hear about your diagnosis.

    -Ren

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited October 2009

    JerseyMom unfortunately you are never home free.  My onc had told me that 5 year line also and my recurrence came 8 years after intial bc.  I think the longest time before recurrance was about 15 years.  Not sure where onc's got this 5 year line but it is so misleading.

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  • shellbelle
    shellbelle Member Posts: 1
    edited October 2009

    FrownI was 4 years clear then mets in my lungs, lymph nodes and liver. Just tried arimedex but it made everything worse so now on a new regime..fingers crossed for some shrinkage.

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited October 2009

    Kerrilyn:  I am so sorry for your recurrence.  I will pray that the PARP trial will do wonders for you.  There are many drugs out there for us TN's so hang in there.  As mentioned above.... we have to look at this as a chronic illness.... and live many years.  I hope you will be around for a long time for your children.  Take care....  Linda

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  • kellyma33
    kellyma33 Member Posts: 7
    edited October 2009

    Hi Kerrilyn,

    I agree with your comment of healthiest sick person you know. Yes I've had BC but I am otherwise very healthy. Sounds like you have done your research. Have you considered along with your fight and Chemo of doing some alternative stuff as well? Just simple stuff like meditation, yoga and/or visualization. This helped me with my primary and then first metastatic recurrence. After 14 years I am now in my 3rd recurrence (metastatic). I agree with  Jennifer who said it is  now a chronic disease rather than a terminal one.

    Your 2 boys will help you stay strong and positive.

    Thinking of you

    Kelly

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  • Kerrilyn
    Kerrilyn Member Posts: 41
    edited October 2009
    thanks everyone for all the good thoughts. I plan to kick cancers butt. The first time around i said let me get my son to kindergarten.....now i am saying let he get him out of high school...He is in first gradeWink. Thats only 11 more years.lol. Everyone have a blessed day.  Thinking and praying for everyone.
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  • mygirls
    mygirls Member Posts: 1
    edited October 2009

    I happen to be reading everyones comments and I figured I'd share my story, I am 32 years old with breast cancer with mets. I was first diagnosed at 30 years old had a double mastectomy stage 2- chemotherapy for a few months 8 treatments, then complete hysterectomy due to family history, then reconstructive surgery.  During a routine pet scan they found a "nodule" on my middle section of  my right lung, it was stage 4 breast cancer with mets, 2cm when they found it... I have 3 neg so no hormones for me and strong family history, grandmother, 2 aunt, cousin, and sister 32 at the time of her diagnosis and now me... I have two daughters 12 yrs, 7 yrs, and 3 month newlywed.  I am currently taking xeloda 2000mg 2x aday for two weeks then off one week, xempra 3 hour infusion once every three weeks. So thats my cancer story.... Scared and confused and trying to be optimistic....

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  • spar2
    spar2 Member Posts: 6,827
    edited October 2009

    Kerrilyn, so sorry this has happened to you and with your attitude I bet you do make it and see you son graduate.  Hope this chemo combo kicks butt.  Please keep us informed on how you do and if you need any kind of help.  God bless you and you and your kids will be in my prayers.

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  • Bitsy
    Bitsy Member Posts: 10
    edited October 2009

    Keri& all others--

     I am so sorry you got this horrible disease.I know it's hard, but, be positive, laugh alot, it helps the immune stystem& relieves the stress. You can& will fight, but chemo/radiation, etc isn't the only best meds. A great attitude& lots of laughter does a ton of good.However hard that will be to laugh while scared to death, it does help!

    God Bless you all. I am praying for you with all my being.

    You will beat this- BELIEVE that!!

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