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How long have you been Stage IV?

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  • amontro
    amontro Member Posts: 185
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    Hi, Pearlady!

    When I was diagnosed in 2008, Stage IV from the start, I was put on Herceptin, arimidex and zometa.  I'm still on those three.  Recently,  I was off the zometa for a few months when I thought I was going to have oral surgery, but since I've been back on it, my aches and pains are back, too.  Onc says zometa is for my bone/spine mets (I also have lung mets).

    I used to be a health nut before dx - no carbs, working out, etc.  Now, I pretty much eat what I want and have a sweet tooth, which I never had before. After menopause, I gained weight to the tune of 5 lbs. a year even though I watched what I ate and exercised.  Now, I don't gain weight, but I don't gorge myself either.

    My favorite pain killer is Percocet.  Unlike a lot of people, it does not make me tired.  It gives me energy. I am more alert with perc, so I take it in the morning, before lunch, and before I go home. My work requires Internet research and I am able to concentrate better.

    Pearlady, you seem to be dealing with this for quite a while. I wish you all the best. My mind wants to be 30-50, but my body tells me that I'm an old lady!

  • pearlady
    pearlady Member Posts: 390
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    Amontro it sounds as if you're dealing with it quite well also. I am thankful that I am able to work full time and like you, it gives me the opportunity to do what I want to do and buy what I want. You are an inspiration to keep me focused on continuing to work. I have taken percocet and vicudin in the past, but they keep me awake. So I try to stay away unless I really need them. I get Zometa and Herceptin also for many years. I don't really have any pain issues with the Zometa, but I'm also taking Femara which makes me very stiff. When I get up after sitting for a while I feel like I'm 90. Then once I get moving I'm okay.

    You certainly don't sound like an old lady. I think working helps to keep us young. Best to you also and prayers for your continued good health.

  • Tilda
    Tilda Member Posts: 30
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    Hi all, dx'd in 2008 with DCIS with micro invasion 0/4 lymphnodes and clear margins. Stage IV with mets to lymph, lungs and chest walls in 2012. That'll be 3 years this month. Hoping to see my youngest of 4 graduate high school in 2017 and then College too of course :)

    Tilda

  • aoibheann
    aoibheann Member Posts: 252
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    2 years and 9 months for me. I was diagnosed August 2012,stage IV from the getgo, extensive mets to spine, ribs, pelvis, hips, arms and skull.

  • raysnbucs
    raysnbucs Member Posts: 14
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    For me it all started April of 2013, when I was Stave IV right out of the gate. Back then it was strictly spinal mets. Got one PET with NED and I was happy, the next the next vertebrae came back dirty. Had it treated, that was 2 months ago. Now the first spot on the back and the vertebrae directly above it is dirty. Not to meantion a 'few' small nodules in my rgt lung and left hip. At least that's what the PET scan showed. But both places have shown false positives before and i am hoping that's the case again.

  • Trusthopecure
    Trusthopecure Member Posts: 7
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    I was diagnosed in 2004 and was cancer free nine years. In 2013 March I was diagnosed w mets stage 4! Fighting skeletal, liver, mets. The last scan showed all inactive except the trochanter ( hip) so much pain. Had lytic lescion radiated. Now taking xeloda and tamixfen. Chasing sunsets and a little mets is my wordpress blog. Mets 2 years 3 months

  • hydeskate
    hydeskate Member Posts: 45
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    I was dx right out of the gate in 2008 with Stage IV Triple Negative, so (counting my fingers) that would be 7.5 years and still kicking.

  • pearlady
    pearlady Member Posts: 390
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    When I was getting my Vitamin C yesterday at my oncs office I met a woman who was diagnosed in 1991 with ER+.  She had liver mets in 1995 and had a stem cell transplant (don't think they do them anymore). She was then cancer free almost 10 years and has been dealing with recurring liver mets ever since.  But she is 68 and still working full time. She says she feels great.  Gave me so much hope that we can all be here for many years.  So 20 years with liver mets.   Great inspiration.

  • Teakie88
    Teakie88 Member Posts: 97
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    pearlady:

    That is great inspiration, and i will ciing to that story like a lifeline! Thanks so much for sharing it with us! Ann


  • SusanR
    SusanR Member Posts: 59
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    Original diagnosis of Stage IIB in November 2002. 

    Stage IV Bone Mets December 2008.

  • Trusthopecure
    Trusthopecure Member Posts: 7
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    trusting for a cure!

  • Trusthopecure
    Trusthopecure Member Posts: 7
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    it's varied about how everyone does describe how long have dealt with liver mets. My oncologist is trying the xeloda/ tamaxifen combo. Anyone have success? Gemzar was wonderful for the bones w faslodex, but letting liver mets grow?

  • nickiemc
    nickiemc Member Posts: 2
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    stage 4 from the start Dec 2012 mets to pelvis age 43 and now liver as well. Total 2 yrs 6 mths.

  • buras54
    buras54 Member Posts: 17
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    Hi Goldie: I was diagnosed with Stage 4 in April of 2012. Bone met to the humerous bone only. Radiated that and it's been fine. 3 months later picked up a bone met in the liver and I have been constantly dealing with that ever since then. Starting my 3rd round of chemo this week or next week. Seeing the chemo nurse today. Had two very small returns on my breast that I had removed but reconstructed. I was originally Stage 1, less than 1 inch big and estrogen  positive and hr2 negative.

     

    Robin

  • susaninsf
    susaninsf Member Posts: 1,099
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    Mets to the brain, lung, eye, femur bone for 14 months. Original dx DCIS 15 years ago when I was 36. New DCIS 9 years ago.

    Despite whole brain, eye and femur radiation, feeling great and still strong and active. Only 1 marginally active (SUV 2.7, was 4cm now 1.6cm) lung tumor left from an original 20+ tumors throughout. Still have a few other tumors (1 breast, 1 eye, 1 brain) but all have shrunken and they no longer show up in a contrast scan. Tumor markers in the normal range for the last two months.

    I have a friend here who has been living with mets for 19 years! Now that we have better and more treatment options, we should be able to beat that!

    Feeling cautiously optimistic about my future though I know things can change quickly.

  • chrissyb
    chrissyb Member Posts: 11,438
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    I was originally dx stage II in December 2003 no nodes but LVI. In May 2009 I was dx stage IV with mets to the bone. I am on my second AI and have been NED for the last four years. So, eleven and a half years all up and six with mets.

    Like a lot of you I was given the two to three year prognosis. ...........I so love the fact that I have defied the statistics and am still here living life to the fullest ans enjoying every minute.

    Love n hugs. Chrissy

  • teacher911
    teacher911 Member Posts: 152
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    I was originally dx in 2008 with DCIS

    Stage IV in September of 2012 so almost 3 years. Hoping for many more years for all of us!


  • Xavo
    Xavo Member Posts: 244
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    I am bumping this thread out to invite more entries for encouragement!

  • Texasrose53
    Texasrose53 Member Posts: 290
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    Original diagnosis stage 3A in Sept. 2013. Stage IV diagnosis May 1, 2015. Has only been a few months but plan on making this yearsSmile.

  • diana50
    diana50 Member Posts: 253
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    2002 stage 3

    2012 mets. In bad shape 2014

    Starting year 4 now with mets and doing very well. I plan to keep on and keeping on. 👍

    Can't believe almost 14 years as a breast cancer patient. Yep

  • artistatheart
    artistatheart Member Posts: 1,437
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    Stage IV right out of the box July 2015. HR+, PR+ Her2 Neg.....Large MET to the liver, small met on lung. Will start Letrozole/Ibrance combo on Monday. I have to say I have been an emotional wreck since DX, so I thank God everyday for this forum and the wonderful ladies who share their up and downs with this disease. Even though I have a WONDERFUL supportive husband through all of this, it is this site that brings me comfort, hope and renews my fighting spirit. I thank you all from the bottom of my heart.

  • pearlady
    pearlady Member Posts: 390
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    Stage IIIA in August 1997

    Stage 1V September 2001

    Have had some ups and downs but feeling great.  Hoping for many new drugs and many more years for all of us.

  • Xavo
    Xavo Member Posts: 244
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    Pearladay, you are such marvelous great news!


  • terrij152
    terrij152 Member Posts: 63
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    I'm new to stage 4, diagnosed in April of this year so just about 4 months for me.

  • Goodie16
    Goodie16 Member Posts: 297
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    Diagnosed as Stage 1A in April 2014. No lymph node involvement. ER+/PR+HER2-

    February 2015: previously discovered spot on brain found to be a brain met via craniotomy. Also ER+/PR+/HER2-. Had GammaKnife to surgical bed and my PET in April showed NED. Clean brain scan in June.

    My next scans are coming up in September. I'm praying they still show NED.

  • Iamstronger
    Iamstronger Member Posts: 102
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    Oh wow, just realized it has been exactly one year ago today I was diagnosed with mets-bones and liver. I intend on being around to see my 8&9 year old boys graduate high school. That's my goal!

    Original dx 1/2010 IIB one node involved.

  • MameMe
    MameMe Member Posts: 215
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    This thread is so encouraging! I was dx'd with mets in April 2014. I have been pretty much my same old self since then, with a bit of bone pain now that is getting scanned soon. My first episode of bc was in 2003, I was 52. Second episode 2012, age 61. Mets at 63.

    Huge cheers to everyone who lives with this, its quite a walk.

  • thinkpiece
    thinkpiece Member Posts: 1
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    Hi, she's baaack.

    I have been a member for almost 15 years, I think, not sure why my profile shows since 2011. Anyway, I was dx'd with IV in January 2014, and spent 20 lovely months on Fulvestrant + Exgeva shots with clean PETs, no SEs. Two weeks ago, my old lesions surfaced so I've just been 'upgraded' ugh to A/A. I'm monitoring SEs, noticing a numb finger, icky taste in my mouth, the usual.

    First dx'd in 1999, Stage 0, and then 2000, Stage 1; 2001 Stage 3b (bilateral + recon, chest wall involvement, second surgery for margins two weeks later), 2011 all local, no nodes, Stage 3b (because of chest wall, surgery and recon over recon), until last January's mets to bones.

    I have accomplished a tremendous amount over these years, in between dx's: family, friends, work, love and mostly happiness. I'm weeks away from finishing my first novel (it's with an agent) at age 59, and in ten days I go to Italy with my two lifelong best friends. Today's biggest worry is that the bad taste in my mouth from Afinitor will destroy my interest in good Italian red wine!

    My thought is always not how long have I got, but how well will I feel? I have prevailed so many times. Today I'm a little bit tired, feeling a little bit mopey (the meds I guess), and I'm going to let myself be late for work!

    Hate to be back, but thank you all for being here. Particularly love the long-timer threads ...

  • artistatheart
    artistatheart Member Posts: 1,437
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    I too am so grateful for long timer stories and plan to do everything I can to be among you down the road. Thinkpiece I love the attitude about not how long but how well you feel. I intend to see my grown children get married and look into the faces of a few grandchildren! Praying for clean brain scan for you Goodie. Pearlady, ChrissyB and Diane, I am inspired by your longevity here, your good grace and comforting presence. Terrij come back often, it helps so much to peruse the threads and gather info and strength. SusaninSF, I'm with you, let's all aim high years wise!

  • anne39
    anne39 Member Posts: 1
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    Diagnosed in 1993, relapsed to Stage IV in 2010 and still here. Was treated with radiation to the lungs, hormone therapy until 2014 then Xeloda (a terrible experience); took a break to recover and then started Taxol in April 2015. I have mets in liver, lungs and bones.