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  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    4myangels, you mean we still have to take tamoxifen when the ovaries come out...oh for crying out loud!! lol  I was hoping I could lesson my pill load.

    Stagefree, I know what you're saying.  I wanted to let you know that I agree with you.  I even find it difficult to hang out with my other BC friends here where I live, because I can't help but to feel a bit......jealous.  I don't want to feel it, or admit it, but it's just how I feel.  I understand that we survive one day at a time.  I call it an everyday struggle since my stage 4 diagnosis.  Since I can only see half of the world now, because cancer took that away from me, I struggle.

    I just like to look at us as survivors.  Even my aunt and my cousin who passed from BC.  I like to think of them as survivors still, because they did it.  They survived during their journey.  That's just the way I like to see it.

    I still like to think that we have a lot of years ahead of us.  If I don't, then I can't cope and I get pretty down.  I like to see it as, the tx's are getting better.  I've met lots of women who have survived a long time as stage IV, and I need to be positive that this will happen to me(and all of us on this board), even if I have my days or moments.  Up, down, up, down, up, down. :)

    Anyway, I'm glad you said something.  I'm glad we've chatted.  I'm glad we have each other.

    Love to you, Jill

  • CJRT
    CJRT Member Posts: 221
    edited May 2013

    Jill- thank you for writing much of what I have been feeling. <3</p>

  • kjones13
    kjones13 Member Posts: 662
    edited May 2013

    Brandall--I am on tamoxifen and i have back pain,but no headaches. I do have a bone met on my L5, but my pain is much higher. In my last ct scans i was stable (yay!) but no answers about my back pain. They are going to do an MRI just in case. I'm taking Celebrex and oxycodone to try to relieve the pain.



    And like you, I haven't seen a post by texasrose is a while. I lurk more than I post, but you and her responded to my initial response and were so kind! Best to you and yours!

  • stagefree
    stagefree Member Posts: 360
    edited May 2013

    Good morning everyone (at least here Smile),

    Jill, That's what we have this thread for, to share our exact feelings, which are no wonder so similar. I shared my feelings about the blog, similar to yours when hanging out with your lower BC-staged friends Wink. Hopefully we'll have many more years discussing the semantics of the matter. As a retired-on-disability gal already, I have all the time in the world to chat now..

    CJRT, I assumed you were already put into menapouse / chemopause, now it is clear. Hope the new treatment works wonders for you.  

    Texasrose, thinking of you & missing your smile..

    hugs, Ebru

  • aic
    aic Member Posts: 37
    edited May 2013

    Ebru, good luck on your scans! Sending you all the goodness!

  • asbochman
    asbochman Member Posts: 3
    edited May 2013

    hi there. i'm new to this board, but i'm 32, diagnosed w/ breast cancer 1/2012 -ac and taxol and radiation, and metastatic breast cancer 12/2012 in my bones and liver. i myself am still working full time as a single mom of a 4 yr old boy, and trying to hold it together. Especially since my cance is trip. negative, I feel there aren't as many options for treatments as other people have who have er  +  or hr+ cancer. I live in ct, and i'm going to Dana Farber on Monday for a second opinion and to see what types of trials are available to me.  i just went through 6 rounds of cistplatinum, and the first 2 petscans showed improvement, but this last one showed new cancer growth. I'm hoping for a miracle, because i feel totally lost and confused and hate that I feel like everyone is looking at me differently... because i feel like the same person .. Anyone else out there w/ trip,. neg ?

  • hydeskate
    hydeskate Member Posts: 45
    edited May 2013

    I was dx with triple negative @ 29 in 2008, Brac1+ had Abraxane, Ac (red devil), BMX, Rads, Abraxane again, my first NED came after finishing the AC, and every scan since has been NED (no evidence of disease) Oct 2009 was my last chemo treatment.  I was given a Chemo Holiday to give my body a reast, I was told it was only going to be a short time since I was Triple Negative the Doctors proved themselves wrong It has been 3+ years,  get scaned or x-rayed every 3 months. 

  • asbochman
    asbochman Member Posts: 3
    edited May 2013

    hi there. i'm new to this board, but i'm 32, diagnosed w/ breast cancer 1/2012 -ac and taxol and radiation, and metastatic breast cancer 12/2012 in my bones and liver. i myself am still working full time as a single mom of a 4 yr old boy, and trying to hold it together. Especially since my cance is trip. negative, I feel there aren't as many options for treatments as other people have who have er  +  or hr+ cancer. I live in ct, and i'm going to Dana Farber on Monday for a second opinion and to see what types of trials are available to me.  i just went through 6 rounds of cistplatinum, and the first 2 petscans showed improvement, but this last one showed new cancer growth. I'm hoping for a miracle, because i feel totally lost and confused and hate that I feel like everyone is looking at me differently... because i feel like the same person .. Anyone else out there w/ trip,. neg ?

  • stagefree
    stagefree Member Posts: 360
    edited May 2013

    aic, thanx, thumbs up for Tuesday! 

    asbochman, welcome, sadly.. 

    hugs, Ebru

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    No problemo, CJRT! xo

    Ebru - thank goodness for disability!  I am on it too.  Mostly because of my vision.  Now if only I can get that darn bus pass.  Thanks for listening to my venting.  We all need to vent once in a while.  I'm glad we all have each other.  Thank goodness for 21st centery and a little something called forums/discussion boards, eh?  Yes, I am Canadian and yes, I am a bit loopy from the dex.

    My next scan is this Wednesday night.  MRI Wednesday baby!  HOPING FOR GOOD NEWS THIS TIME!!!!! 

    cioa bellas! xoxo Jill

  • nbnotes
    nbnotes Member Posts: 338
    edited May 2013

    dearjilly - Good luck with your scans, and may you have anxiety-free days leading up to them.

  • CJRT
    CJRT Member Posts: 221
    edited May 2013

    please add me to your prayers, ladies! i have my first scan since starting this round of treatment this friday! feel the anxiety already. good luck to all of you. you will be in my thoughts and prayers!

  • Z28Femme
    Z28Femme Member Posts: 9
    edited May 2013

    DearJilly & CJRT-Good luck with your scans!

    I have my PET scan tomorrow afternoon...

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    Z28Femme, Is the PET scan better over MRI in your opinion?  I've been trying to get a PET here in Canada for about a month now, and it's just not flying with my doctors.  I'm like WTH?  I don't get it.  I will be thinking about you tomorrow! 

    Thanks for all the encouraging words my friends.

    and Nancy, that's what the Ativan is for! ;)  will be good to go!

    CJRT, I'll be thinking of you Friday.

    Breathe everyone, remember to breathe.

  • CJRT
    CJRT Member Posts: 221
    edited May 2013

    Thanks dearjilly



    Thanks z28femme.... And I will be sending positive thoughts your way tomorrow afternoon!

  • asbochman
    asbochman Member Posts: 3
    edited May 2013

    Any Opinons on the clinical trials available?? i Went to dana farber yesterday, and I'm thoroughly confused, because i haven'tt had much luck with the chemo treatments, so I want to hear how people feel about the trials available???

  • CJRT
    CJRT Member Posts: 221
    edited May 2013

    Well my scanxiety will be extended I guess. Just found out from the PA that I won't be having my pet on Friday bc of this respiratory virus/laryngitis that I picked up from the kids. Apparently you can get false positives that way. Waiting to hear back from the doctor. Anyone have something similar happen?

  • Yanyan
    Yanyan Member Posts: 12
    edited May 2013

    Hi ! I am 38. first dx with stage 3C at 36... had a recurrence localized skin mets at 37... on xeloda and tykerb till 38 and have to switch chemo again as skin mets have recently progressed.

  • Z28Femme
    Z28Femme Member Posts: 9
    edited May 2013

    dearjilly-

    I will have to agree with you there-pet/mri are both detailed scans, but work in very different ways. Of course a pet scan costs 8 times more than an mri, heh!

    I am happy to say that my pet scan came back with good news! Chemo is working like it should and I'll be on Taxol for another 6 months at the least.

  • CJRT
    CJRT Member Posts: 221
    edited May 2013

    so happy for you Z28! Celebrate this weekend!

  • aic
    aic Member Posts: 37
    edited May 2013

    Congrats on chemo working, Z!

  • texasrose361
    texasrose361 Member Posts: 895
    edited May 2013

    Its been a little over a month since i have been online. Still dealing with computer issues!

    Update on me- i saw my dr today and we discussed putting me on Kadcyla (tdm1) I have a base line CT scheduled for next Friday. Doing well, no major issues to speak of!

    Just livin life wondering how the heck y'all are doing! 

    I have 2 pages of reading to do for this thread, once i catch up I will be back!

  • Latte
    Latte Member Posts: 141
    edited May 2013

    Welcome back Texas rose. I was worried about you but knew you were having computer issues and also moving house, so thought that might be why you were missing. Glad you are back!

  • texasrose361
    texasrose361 Member Posts: 895
    edited May 2013

    thanks Latte! 

  • stagefree
    stagefree Member Posts: 360
    edited May 2013

    Scans & TM's OK, things look stable for now. MO said next appointment is mid-July.. that's a relief for now. Getting along with Xeloda so far with minimal SE's. 

    Texasrose nice to see you back. 

    hugs, Ebru

  • brandall
    brandall Member Posts: 97
    edited May 2013

    Texasrose!  I'm so happy to see you, I was getting a bit worried.  I'm glad to hear you are feeling well!

    Z28 - congrats on the great scan results :)

    CJRT - Has your scan been rescheduled?

    Nbnotes - How are you doing lady?

    J1E1N1A - Are you still here lurking?  I'd love to hear from you!

    Hi Yanyan - I'm sorry you have to be here :(  How are your skin mets doing?  What chemo will they put you on next?

    asbochman - I'm sorry, I don't know much about clinical trials this point.  I do know that they have been amazing for some people.  One of my infusion room friends was on the TDM1 trials and she was pretty much near death before starting it (doctors told her to take a "last" vacation with her family) and now she is NED!  So they can do great things.  If you post on the main stage IV board about specific trials, a lot of the ladies there are knowledgable and might know more!

    Ebru - I'm so happy things are stable and the Xeloda isn't causing you the heart issues it did previously!

    Hi Latte and aic - How are you guys doing?

    Kjones - thank you for responding about tamoxifen causing you back pain too.  Have you had your MRI yet?

    Dearjilly - How did your scans go?

    Hydeskate - How are you feeling?  I know you have a lot of trouble from your sjogren's too :(

    I think I got everyone on this page.  How is everyone else doing?  Please check in!

    I'm okay.  I got my tumor markers yesterday and for the first time since I've had them drawn they were up.  Still in the normal range at 19, but up 5 points.  The nurse said it was totally normal and not to stress, but as I'm sure you can all relate - I'm having a hard time not stressing!  My next PET scan will be sometime before my onc appointment June 10th, I just have to call and set it up.   I have to say, I'm getting kind of tired of people saying things like, "Oh my Grandma has breast cancer too" when they find out I have breast cancer.  That is nice, but your Grandma got to meet you - her ADULT grandchild - and I might not even get to see my littlest guy make it to kindergarten.  It is NOT the same :(  So many people have said this to me and it's just kind of getting old :(

  • Latte
    Latte Member Posts: 141
    edited May 2013

    Hi all



    I just did my first round of a clinical trial. 8 more weeks until scans to see if it is working...



    For those of you with young kids, take a look at the thread I started about a new book for kids about MBC. It looks like it could be helpful, and they are using their budget to provide free copies to those who need one. http://m.facebook.com/pages/The-Cancer-That-Wouldnt-Go-Away-a-story-for-kids-about-metastatic-cancer/358690442097?id=358690442097&_rdr

  • stagefree
    stagefree Member Posts: 360
    edited May 2013

    Dear Brandall,

    I hope the slight increase in your TM's is just a flare & nothing else. Love your uplifting mood today, despite the crap on your plate.

    love & hugs, Ebru

  • dearjilly
    dearjilly Member Posts: 73
    edited May 2013

    Brandall, I TOTALLY, get it!  I too have had the same feeling.  It's defo NOT the same.  I know, cancer is cancer, no matter what age, but if I knew I was getting cancer I would have waited to get it.  You know?

    The nurse can say not to stress all she/he wants, but the fact of the matter is.....we worry.  I will rub my buddha's belly for you my friend! xo

    I have to say, though, when I was diagnosed in Nov. 2011, I thought I wouldn't see my boy go to school, and guess what?  He's almost done JK.  I'm SO happy about this!!!  Now I just have to wait for my daughter to go to school, then I'll be REALLY happy! :)

    Thanks for asking about my scan.  It's actually good news.  My doctor is now leaning towards necrosis/scar tissue/radiation effect.  SO.....I guess I was right and not the doctors...hmmmm funny.  I'm glad I told them I wanted to wait until they biopsied my brain!!  geeezzzzzz

  • kjones13
    kjones13 Member Posts: 662
    edited May 2013

    Hey texasrose! Glad to see you are back! I was worried...



    Brandall--I did have my MRI and it showed nothing! Which is great but at the same time we still don't know what is causing the back pain. It is not the tomoxifen because for me the pain is in my t10 area. It goes all the way across my back. I am less sensitive to touch there...it is just a constant dull pain. I have increased my pain meds but I'm building a tolerance quickly. Guess it's off to see another doctor! But hope your scan goes well.



    As for people and their grandmothers...at least they got to be grandmothers!!! I really have got to let go of some of my anger...it's directed towards older people in general...even my mom! She keeps complaining about her eyesight or this ache or pain...I just want to say shut it! I guess it's more jealousy then anger...

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