How Many Are We?

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  • Bobbyjo
    Bobbyjo Member Posts: 1
    edited July 2013

    Although I have been reading the posts for the last six months, this is my first post.  I feel comfortable now in adding my thoughts along with the other brave ladies in Stage IV forum.  I have mets to my spine and ribs.  Am due for a cat scan on July 22 and hope there is no evidence of further growth.  Somehow, some way I plan on fighting the good fight and with God's help be here to see my grandchildren grow up.  I pray for you all every day.

    Bobbyjo

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  • Ruchi
    Ruchi Member Posts: 4
    edited July 2013

    I am also interested to know the number of women fighting bravely with stage IV breast cancer.

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  • bobkat
    bobkat Member Posts: 304
    edited August 2013

    Hi all, you can count me in as well. Have not posted in a year or so but have been lurking!! Hope to start posting again soon. Love to all.

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  • crsp34
    crsp34 Member Posts: 7
    edited August 2013

    count me too.

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  • Landaffqueen1
    Landaffqueen1 Member Posts: 19
    edited August 2013

    I would like to hear from those of you who are Xeloda and /or have mets to the liver

    I was diagnosed in 2007 stage 2 ER PR + 2 sentinal nodes, chemo and radiation, tamoxifen then 3/13 diagnosed with liver mets advanced, on Xeloda since 5/13, doing well but have no idea for how long...

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  • Landaffqueen1
    Landaffqueen1 Member Posts: 19
    edited August 2013

    Hello to joCanuck ,

    Just joined so not sure how this works, but I see you are from Ottawa, a fellow Canadian.

    I too am from Ottawa but live in NH.

    Just diagnosed with liver mets in March 2013...am on capcetipine or Xeloda ...

    Doing well but anxious to know what future holds...

    We spend our summers at our cottage near Wakefield...have for 30 some years.

    How are you doing?

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  • hendricks1
    hendricks1 Member Posts: 88
    edited August 2013

    Landaffqueen- are you just taking Xeloda?  I'm on Herceptin/Xeloda/BKM120 since June.  My liver mets were shrinking a good bit already on herceptin/perjeta/abraxane but in May found I had brain mets and they switched me to this trial.  Had been good til some feet neuropathy and a new Rx for that-since then I've had a crazy rash issue but I'm still here so gotta juggle the good and bad some I guess.  Hope you're doing well!  By the way I'm Her2+/ER-PR-

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  • claires_mum
    claires_mum Member Posts: 9
    edited August 2013

    Hi there, you can add me to your list. I joined about 6 weeks ago. I havent posted much but have gained a lot of info from reading through the stage 4 threads. I was diagnosed as stage 4 21 months ago, 2 weeks after being diagnosed with BC

    Laughing

    Mary

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  • jocanuck1951
    jocanuck1951 Member Posts: 1,003
    edited August 2013

    Hi Landoffqueen! Nice to hear from you, Wakefield is beautiful cottage country! I was diagnosed last November, still in shock. Where are you getting your treatments Quebec or NH? I was on Abraxine for 12 infusions over 4 months and Herceptin every 3 weeks for life. I had regression in March but have no idea what I am now as my next scan is mid August. We should touch base, email me for a coffee meet-up. Xoxox Jo

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  • lalenlou
    lalenlou Member Posts: 25
    edited August 2013

    I was diagnosed in August, 2012 with Stage 4 BC.  I had a 4 1/2 cm tumor removed and 24 lymph nodes that showed 15 positive for cancer.  My T-8 vertebrae also had breast cancer. I still get Herceptin/Perjeta every 3 weeks with Zometa every 3 months. I just had a PETscan today because a bonescan I had a few weeks ago showed 2 more suspicious spots.  I am new to this site and you girls have no idea how comforting it is to me to realize there is still hope and life after getting a Stage 4 diagnosis. 

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  • WJKC
    WJKC Member Posts: 1
    edited August 2013

    I'm stage IV. I was stage IIIa in 2002, declared in full remission in 2003. June 28 2013 was diagnosed with stage IV. No warning really. I'm 54.

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  • aaoaao
    aaoaao Member Posts: 593
    edited August 2013

    Hey all...dx stage IIb November 2009...dx stage IV May 2013 with one bone met to the lower spine.  Started Taxol end of May.  Antigen numbers have been going down, one is even within normal range now.  I'm hopeful for the future...I'm a fighter with good reasons to fight..my family.  Wishing well to you all.

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  • Florence2006
    Florence2006 Member Posts: 28
    edited August 2013

    Add me to the list.

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  • MamaPeg2
    MamaPeg2 Member Posts: 35
    edited August 2013

    I also have liver mets. I am on Xeloda. After 3 rounds, so far, I have shown great improvement.

    1 small lesion -stable

    1 small lesion - gone

    1 larger one - shrank by more than 50%

    I was shocked, as things haven't been going my way too much. I will stay on Xeloda forever, as long as it keeps working.

    I would say, myself, the side effects have been worth it.

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  • EMAW
    EMAW Member Posts: 132
    edited August 2013

    Liver mets, on Herceptin & Aromasin.  CA numbers are normal now.  

    Just had a CT scan this past Monday, first time they've spread one out to every 6 months.  

    I am optimistic, but also aware that each day's breath comes from God and I'm thankful.

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    Add me to the list, just diagnosed with mets to the spine (4 spots)and liver. Switching oncologists, so not sure what treatment will be. I'm 33, married with two kids. I'm not going down without a fight!

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  • chanah
    chanah Member Posts: 366
    edited August 2013

    Diagnosed with lung mets, suspicious spots in liver and a suspicious rib.  7/11/13.

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  • Trish03
    Trish03 Member Posts: 292
    edited August 2013

    Please add me to the list. Dx May 27 with liver mets. Original dx of Stage III almost 10 years ago. I'm on Perjeta/Herceptin/Taxotere.

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  • bestock
    bestock Member Posts: 322
    edited August 2013

    I got dxed with liver mets in feb 2013, no BC since 2008..now this recurrance.... just found this thread. I have pain in my liver and have ca27-29 and will find out if I am up or down, any experience with Falsodex for mets???
    now am on falsodex, as xeloda and abraxene were so toxic to me. Glad to know I am not alone..

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  • waterlady
    waterlady Member Posts: 56
    edited August 2013

    Hi,

    Just posting to say hi, I have been stage IV since 2009.  Her2+ and currently on Kadcyla. 

    Best wishes to you all

    Fern

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  • bestock
    bestock Member Posts: 322
    edited September 2013

    My ca 29-29 was 24 last tues bloodwork..

    so low for me..lowest sin

    ce dxed in feb with stage 4

    I am grateful to the Lord, I  am a happy camper right now..

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  • Redroan
    Redroan Member Posts: 168
    edited September 2013

    Bestock, Congratulations! That is awesome news. !

    redroan

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  • debsing
    debsing Member Posts: 89
    edited September 2013

    One year ago, liver and bone mets.. just started kadcyla

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  • StickiVicki
    StickiVicki Member Posts: 11
    edited September 2013

    I was dx as Stage IV 18 Jan 2008 and had to have a total hip replacement 22 Jan 2008 as a result.  Initially dx in Aug/Sep 2007 as Stage II, which would have been Stage IV if the doctors had listened to me.

    Vicki xxx

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  • Sue2009
    Sue2009 Member Posts: 228
    edited September 2013

    Still counting ? New to site, wish I wasn't on this list, but I am # 30

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  • sherbab
    sherbab Member Posts: 106
    edited September 2013

    Please add me to this list now as well.  Originally Stage I with a BMX in July 2012.  Just had my DIEP flap reconstruction in June 2013 after I went through 20 weeks of A/C chemo and in September it was discovered I have a recurrance in my newly reconstructed breast, my left lymph nodes and bone mets in my left femur.  This is all very new to me and a little overwhelming but I am reading a lot on here and a lot of you have great words of wisdom and insight and I appreciate that this board is here for that reason.  I am now on Taxotere and Xeloda and will find out about the bone mets as soon as I get scheduled to see that doctor.

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  • stride
    stride Member Posts: 470
    edited September 2013

    If you look at the original post, it looks like the list is no longer being added for people diagnosed after April 2013. She says it was meant to be a snapshot in time, not an ongoing project. It sounds like there is not a list of all of the Stage IV people on this site. Is anybody else getting the same impression?

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  • stride
    stride Member Posts: 470
    edited September 2013

    Right after my last post I saw this thread about a "central address book": http://community.breastcancer.org/forum/8/topic/709156?page=2#idx_49

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  • hendricks1
    hendricks1 Member Posts: 88
    edited September 2013

    Just got home from 3 nights in the hospital with Xeloda/BKM120 rash.  I think it's the sun sensitivity that really set it off but I've had an awful rash down my arms and around my torso-it follows the lines of my bra and pants so its like the rash flares up wherever the sun shines through my clothes.  Anyway, feel like a beached whale pumped with saline and steroids for 3 days.  Just thought I'd share my experience.  Don't know now if I'll be taken off the trial and what my next step will be but the Xeloda, while seeming to work on my brain mets, caused me feet and skin problems that were too severe. Anyway, on we go to the next thing right?

    Take care all!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited September 2013

    stride, you are right.  This is a snapshot in time.  Occasionally, I still get notified by a stage iv gal here or there who was been diagnosed up to the end of April and a member of bc.org at the time.  I continue to add the names of those women.  Numerous women who've joined the site after April 30, 2013  who've requested to be added have not been placed on the list.  I was curious at the time what kind of readership we had on the forum who were stage iv, having absolutely no idea what kind of response there would be.  I think the list is around 335 women.

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