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  • j1e1n1a
    j1e1n1a Member Posts: 84
    edited March 2013

    Nancy- 6 Total..1 every 3 weeks. Only 2 more after this. So far the 3rd wss the worst. I am feeling good today..thinking positive.



    Brandall~ good luck on surgery....thinking of you. Keep us posted as best you can. Sending lot of Hugs. :-)

  • nbnotes
    nbnotes Member Posts: 338
    edited March 2013

    Jena -That is the same number that I did.  On treatment #4, they added aloxi to my pre-meds, and it helped a lot with nausea, etc.  Just something to ask about if that is one of the things that is rough for you. 

    Brandall -- Good luck today with the hysterectomy. I hope everything goes smoothly.

  • Kaelia
    Kaelia Member Posts: 13
    edited March 2013

    Jena, thinking of you on your 4th infusion day. I hope it went well :)

    Brandall, good luck on your surgery and hoping for a quick recovery :)

  • Tweetyb422
    Tweetyb422 Member Posts: 28
    edited March 2013

    Hi everyone. I was diagnosed with stage 3 breast cancer 1 year ago. I had a umx, lots of chemo then finished with rads right before Christmas. During the Christmas break started having lots of leg/hip pain...found out I have mets to both hips and 3 small spots on my lung. I was so upset, thought I was all done. I am currently finishing up rads then I am having my ovaries removed since tamoxifen didn't work then more chemo. I am a stay at home mom to a 12 year old girl. I feel so robbed, I was just starting to feel like I was getting my life back, then this happens. I am so tired of being the youngest person in the chemo room...

  • Tammylynn
    Tammylynn Member Posts: 22
    edited March 2013

    Tweety..I feel the same way! It's so scary and so easy to say why me! That's all I could think when I was told I was stage 4. I have a 10 yr old and I need to be here for him! I am thankful for the ladies on this board. They all give me the hope I need to get thru treatment. I am determined to be here five years from now to help other ladies know they can do it. I guess we just have to have faith and stay strong. I had chemo last week for the first time and I was by far the youngest in the room. It made me sick! I just sat back and envisioned my little one graduating. I told myself other ladies my age have done this, I can do it and I will do it! I have to be here for my little one, this cannot beat me! Reality sux, have faith and read stories from the other ladies here, I think that has helped me more than anything!

  • nbnotes
    nbnotes Member Posts: 338
    edited March 2013

    Tweety - I'm so sorry that you've ended up here with us, but welcome at the same time.  I have found this board to be so helpful, and there are a lot of great people who will give support and/or share in a vent as needed. 

  • CJRT
    CJRT Member Posts: 221
    edited March 2013

    Tweety- you have echoed what so many of us feel.

    Brandall- hope your surgery went well and your recovery is easy.

    I had hip replacement Wednesday and the dr said it went well. I have been running a fever and feeling pretty lousy but am feeling better this morning. i might get released today. I also started my first infusion of Kadcyla (TDM1) Monday and was wondering if any of you have experience with this drug.

  • nbnotes
    nbnotes Member Posts: 338
    edited March 2013

    CJRT- i dont have any experience w/ that drug, but hope you lose your fever quickly & your surgery recovery goes well

  • CJRT
    CJRT Member Posts: 221
    edited March 2013

    Thanks, Nancy:)

  • CJRT
    CJRT Member Posts: 221
    edited March 2013

    Nancy- just getting a chance to read thru all the older posts. So happy for your results!!

  • aic
    aic Member Posts: 37
    edited March 2013

    Congrats to those who have gotten recent good news. Hello to the new ladies that have joined. I am in the process of a move and a new relationship :) so I haven't been on as much. Sad to see the new people that have joined but so glad we all have support. I too am the youngest in the chemo room by far. I feel the stares. :( I get scan results on Wednesday. These are the first since just being on antibodies with no chemo. So nervous! I want to keep my ned status!

  • nbnotes
    nbnotes Member Posts: 338
    edited March 2013

    aic - Fingers crossed and thoughts/prayers for good results!

  • JAK07
    JAK07 Member Posts: 1
    edited March 2013

    I was diagnosed with bone mets in December 2012. I had my spine radiated and now have to wait three months before a PET scan. I will get that in one more month now. I am taking tamoxifen daily and getting an XGEVA shot every 4 weeks. I was diagnosed with breast cancer at 35 (February 2012) and bone mets at 36 (December 2012). I have a husband and two children that I home school. I live in a rural area and I don't have a support group. I am experiencing side effects from the tamoxifen and shot and worry for my upcoming PET scan.

  • Deyla7641
    Deyla7641 Member Posts: 53
    edited March 2013

    Jak07- so sorry you have to join us. This site is a Godsend because of all the tremendous support these wonderful ladies give. I was diagnosed 6/22/12 and then the bone met came 2/12. I will be starting Ixempra with Xeloda 4/1 and have a scan after three cycles. I'm on break from radiation because of my skin breaking down but I have four more to go. I also have two little ones at home my son is 3 and my daughter will be 1 next month. I am lucky that i have a lot of family and friends nearby. Wishing you the very best of luck! Deyla

  • sugarmagzz
    sugarmagzz Member Posts: 8
    edited March 2013

    Hi everyone, I am still in the process of reading through all the posts here but I wanted to introduce myself. I'm 34, was diagnosed with stage IV triple negative BC in December. I was misdiagnosed for a year as having a "breastfeeding related lump", I had 3 ultrasounds and fine needle biopsy, all negative during that timeframe. Last u/s on 12/21 finally revealed the tumor that was growing and spreading and a core needle biopsy on Christmas Eve confirmed my worst nightmare. I just finished 4 rounds of AC with little results and am currently waiting to hear about acceptance into a clinical trial at Dana Farber. If I don't get in I will be starting Taxol, really hoping that it will do something as I am having a rough time emotionally since finding out that AC didn't work. I have mets to lymphs, liver, and lungs. I have a 17 month old son and a wonderful husband, they are the only things keeping me going at this point. I live in Massachusetts - I'm so sad to have to meet you all like this but I'm so glad to have found a community of other young women in a similar situation, I don't have to explain to you guys just how lonely this dx can be.

  • Tammylynn
    Tammylynn Member Posts: 22
    edited March 2013

    Sugar...I'm so sorry to hear your AC didn't work. I have had one round of chemo and 3 more to go before getting another scan to see if it has worked. It is such a scary thing, waiting and hoping. I have mets in my lymphs, lungs, rib, hip and spine. I have a 10 yr old. My thoughts and prayers are with you. What kind of trial are you trying to get into? I was reading about one at my drs office last week for triple neg. I will have to get that info for you when I go back Friday.

  • Tweetyb422
    Tweetyb422 Member Posts: 28
    edited March 2013

    I was just reading over the posts and you are so right, it is lonely, none of my family or friends can even begin to understand what I'm going through. I went to a support group last month, I was the youngest and only stage 4 there, I got all the sad uncomfortable looks.

  • sugarmagzz
    sugarmagzz Member Posts: 8
    edited March 2013

    @Tammylynn - Thank you for the thoughts & prayers, they are always welcome. If you do find any info regarding the one for triple neg please do pass along, I am always interested in learning more - thank you! I am on board for 2 trials at the Farber, one that tests for circulating HER2 tumor cells in the blood, which is not likely since I am triple negative, but a small chance. That one is for Trastuzumab and Vinorelbine. The second is for Ruxolitinib, it is based on the presence of pStat3 marker in the tissue sample from my biopsy. I also am inquiring about one that is for BRCA+ mets patients, this is the link for it:

    http://www.clinicaltrials.gov/ct2/show/study/NCT01506609?term=ABT-888&show_locs=Y

    @Tweety - I get those looks often, and always at treatment because I am the youngest cancer patient there. I haven't ventured out to a support group because I haven't found one for stage IV and I just don't think I could relate to anyone who isn't facing the same situation.

  • Latte
    Latte Member Posts: 141
    edited March 2013

    Sugarmagzz - I also am looking at that brca trial that you linked to, and I have also spoken with a couple of people on the boards who were on it too. My onc wants me to do it, but I want to give femara a chance first...

  • sugarmagzz
    sugarmagzz Member Posts: 8
    edited March 2013

    @Latte - I am speaking to my onc about it on Thursday, it looks promising and PARP inhibitors are all the rage these days! I haven't heard of femara, I'm still new to all of this and learning every day. When do you start with it or have you already?

  • Latte
    Latte Member Posts: 141
    edited March 2013

    Sugarmagzz - femara is an AI - but you are triple negative so that's why it's not an option for you and you haven't heard of it. I started it about 10 days ago, but i have to wait 8 week to see if it is working. By the way, I was dx stage 4 a couple of days after you so i am also learning still.

  • NifferLS
    NifferLS Member Posts: 4
    edited March 2013

    Just turned 34 this month, i was dx 1.5 yrs ago @ 32 w/BC and 9 days later learned it was MBC (Aug 2011). Now w/2 year old twin boys (were 4+ months old @the dx) i no longer work (x 6 months) however parenting sure is a tough job. I have no read this entire thread as i am joining late but just wanted to connect w/everyone, offer myself as resource if anyone has ?s about tx etc. i've experienced and

    *ask about what folks who have taken Xeloda have experienced. I just completed day 3.*

    Here's a synopsis of what i've been through in case anyone is new to one of the drugs or procedures i've had & has questions:
    Er+, Pr+/- (right vs left) &a HER2 -

    - 6 cycles of TAC chemo (once every 3wks)

    -B/L modified radical mastectomy w/TE placement (+ for lymphnode removal; no lymphadema to date)

    -radiation b/l (clavical to ribs) 35+ w/boost tx

    -tamoxafin

    -both ovaries & tubes removed after mets found

    -phase II clinical trial w/use of CABOZANTINIB (progression, no longer qualified)

    - Letrozole (or Femara) an AI

    -recent CT/CAT revealed worsening bone & liver mets

    *began oral chemo: Xeloda (capecitabine) 3 days ago

    I have: bone, liver, lung mets (only symptomatic w/liver)

    I have had cording and C3-T1 buldged disks @ every level (w/degenerative disk disease and sclerotic Mets to spine, besides other bone mets); muscular issues associate w/this but not true "bone met pain" associated w/neck (thankfully)
    *i've been taking Xgeva since dx (due to bone mets)

    * I also have inflammatory BC however they didn't dx it until biopsies following reconstruction when I exchange TE for implants Nov 2012 because it doesn't present like IBC but my skin is involved & had recurrance. As an aside on reconstruction I am not going further than "a breast mound" both sides w/small implants



    Wishing everyone well and would like feed back from anyone who is or was on Xeloda for some time about your experiences.



    Thanks. Sorry for length of message (won't write a novel next time)

    Btw living in the DC metro area in MD since 2004u but a New Englander @ heart (Kasi from Windham, ME who started this thread, I got my undergrad & grad degree @ UNE: Biddeford & Portland, ME)

    *you are all awesome and clearly some pretty amazing women!

  • j1e1n1a
    j1e1n1a Member Posts: 84
    edited March 2013

    Wow ladies...sorry been out so long. Welcome to all the newbies...wish we could have met under different circumstances....but so glad you are hear. I hope you find all the support i have found. These ladies are great. Just wanted to say hi and hoping you all are well.

  • Sonata
    Sonata Member Posts: 78
    edited March 2013

    Just wanted to introduce myself on this thread. I haven't been around for the last 9 months or so because I had a stroke last June and have been rehabbing since.

    My name is Cate. My first bc dx was at 29. 6 years later, I was dx'd with bone mets.

    I'm kinda worn out today, have a few lingering weaknesses and fatigue issues. But I'll be back to share more and I promise to try and keep up. ;)

  • NifferLS
    NifferLS Member Posts: 4
    edited March 2013

    Sonata,

    I am new to this thread but can only beging to imagine what you've been through over the past 9 months in particular. Take care and glad you are feeling well enough to join back in on the boards!



    (As an aside: I am biactually. I haven't worked in the past 6and months but still a passion of mine. Love my job. Miss it. I hope that if you had OT, while going through rehab, they were helpful and that their skill & what they had to offer you was presented well & were was helpful.)



    Jen

  • Sonata
    Sonata Member Posts: 78
    edited March 2013

    Jen: Thank you! I've worked really hard these last 9 months. Its been an experience for sure. I did have OT and it was very helpful. I'm grateful to have gotten a big part of my daily life back because of them. While I still have some expected lingering weaknesses and fatigue, life is pretty much back to where it was prior to the stroke.

    ~Cate

  • Latte
    Latte Member Posts: 141
    edited March 2013

    Cate, I was wondering (hope you don't mind). Was the stroke related to bc or one of your tx, or was it just a bad coincidence? It seems like you had enough to deal with without the stroke already!

  • rinneron
    rinneron Member Posts: 3
    edited March 2013

    Hi! I'm 28 (so not quite in the 30 club, but I better make it there!) and was just diagnosed as stage 4 a couple days ago. My original diagnosis in 2010, when I was 25, was stage 3. I am determined to make it into my 30s and maybe even beyond -- I have faith in my youth, trust in my doctors, and hope for the future, as all of us should.

  • Sonata
    Sonata Member Posts: 78
    edited March 2013

    Latte: It was not related to bc. And as far as they can tell, it wasn't related to treatment. Although, if nothing else, some of the meds we take can give us a pre-disposition to having strokes and/or heart attacks. Guess I was one of the 'lucky' ones!

    Yes, I've been through a lot; at times i get so angry, feel its so unfair. But I take it all in stride and roll with the punches--->"Cowgirl up" as I say. It's the journey I've been given. Can't change it, so in order to keep moving forward, I have to accept it.

  • Latte
    Latte Member Posts: 141
    edited March 2013

    Thanks Cate. I hope your luck improves from here onwards! You've had more than your fair share of things to deal with...

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