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2013 Sister Warriors

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  • keepthefaith
    keepthefaith Member Posts: 856
    edited October 2013
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    Thank you ladies for your encouraging words!

    Welcome Iloveponies. You have found a wonderful group of ladies who will support you and encourage you along the way.

    uds17, sorry you have to go through chemo. When will it start? I think I am about at the same place you are in treatment. I have my port in already and MO said 4-6 wks from surgery before chemo starts. I will see MO on the 29th to go over path report and discuss chemo treatment.

    naiviv, I love your creative ideas!

    Cindy, thanks for your uplifting posts to everyone! I hope your LE starts getting better soon.

    I hope you all are able to enjoy the rest of the week-end in comfort and peace!

    HUGS~

  • Malakies
    Malakies Member Posts: 15
    edited October 2013
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    Hello all..


    Just a little update here: Tomorrow is my second round of A/C chemo.( I'm having 4 rounds, every two weeks. Then the Taxol for 12 weeks, weekly doses of that. ) Last night I had a bunch of hair strands come out. UGH. I thought I was mentally prepared for this hair loss thing, but last night I broke down and cried. I didn't even lose my hair yet!! But I couldn't control the tears.


    Today, I'm much better. My cousin drove up (an hour and half) and gave me a sassy short hair cut. I decided this morning that I didn't want to deal with long pieces of hair falling off my head... so I have a 'boys cut'! And to my amazement, it looks really cute! I wouldn't have the courage to cut my hair this short under any circumstances... I guess cancer gave me the balls to do so! Strangely, this cut has made me calm and happy.


    I'm blessed to have amazing family and friends. :)


    Wishing you all a wonderful night!

  • TeamKim
    TeamKim Member Posts: 301
    edited October 2013
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    Malakies -- So glad you found some solace in your new haircut and the comfort of family -- treasure the moments and store them up for the times you need them! (((Hugs)))

  • keepthefaith
    keepthefaith Member Posts: 856
    edited October 2013
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    Malakies,

    Good for you for getting your hair cut. I will be doing that soon and dreading it also. I did find a place that will take my gray hair as a donation, so I won't have much left when I get it cut. I think letting our emotions flow will help us heal, so cry if you need to! I guess our fears are usually worse than reality! Good luck with your treatments.

  • taguekids6
    taguekids6 Member Posts: 32
    edited October 2013
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    So we get to pick up our foster son's baby sister today! Such a healing balm caring for another little one! So excited they will together!


    Love and prayers to everyone today........I am so much better. The depression is much better, not looking forward to starting the tamoxifen tomorrow though. Praying for minimal SE's.


    Kimberly

  • keepthefaith
    keepthefaith Member Posts: 856
    edited October 2013
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    taguekids6,

    Congratulations! That is good news. So glad you are feeling better. This is a roller coaster ride for sure!

    My surgery went well on Friday and seeing my BS tomorrow for follow up. Praying for a good path report.

    HUGS to all!

  • naiviv
    naiviv Member Posts: 308
    edited October 2013
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    Congrats on the little girl!!!

  • keepthefaith
    keepthefaith Member Posts: 856
    edited October 2013
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    3/3  negative nodes and clear margins! Happy Dance!

    Going to Canyon Lake with my kids and grandkids this week-end. So looking forward to it.

    Hugs to all~

  • ndgirl
    ndgirl Member Posts: 950
    edited October 2013
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    Great news keepthefaith! go enjoy your weekend.. we just love good news.

  • naiviv
    naiviv Member Posts: 308
    edited October 2013
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    Keep the faith so happy to hear the good news....


    V

  • TeamKim
    TeamKim Member Posts: 301
    edited October 2013
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    Yeah KTF!!!! Happy dance!!!!

  • AnnieeC
    AnnieeC Member Posts: 23
    edited October 2013
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    I'm here with ya! I'm going to kick it's butt too! I was diagnosed with IDC 6 days ago.

  • smo23915
    smo23915 Member Posts: 71
    edited October 2013
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    Anniee where in Michigan are you- I am also from MI. Where are you going for your treatment?


    Sharon

  • keepthefaith
    keepthefaith Member Posts: 856
    edited October 2013
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    Thank you ladies, for your encouraging words! You're the BEST!

    Teamkim, It looks like we have the same DX; I am 1a also, except my tumor was a tad larger than yours. I meet with my MO next wk. Did you have an onco test? How are you doing on your chemo regimen so far?

    Welcome anniee~

    ((HUGS everyone))

     


     

  • TeamKim
    TeamKim Member Posts: 301
    edited October 2013
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    Welcome anniee! We are a strong and supportive group -- glad you found us, but sorry you have to be here.


    KTF -- I had the Mammaprint test (which is similar to the Oncotype) and that came back high risk (29% chance of recurrence without further treatment) so chemo was the order of the day. Also my MO ordered the BCI test, which shows that with chemo and 5 years tamoxifen, my recurrence risk goes down to less than 5% and that continuing tamoxifen to 10 years would not reduce the risk further. I will also have rads when chemo is over, which reduces risk of local recurrence in the same breast even further. It's all a numbers game at this point, which can be confusing for me, but my MO is patient with explaining until I get it. I am 58, and post menopause, so that has something to do with the equation as well since my cancer was E+\P+


    I am doing pretty well on my chemo so far (1 tx down and 3 to go). I am on TC x4, with 3 weeks in between. I will get a Neulasta shot one day after my next infusion to help with white blood cell count! which dropped low after 1st infusion and I developed a rash. No nausea, though, and I have been able to work so far! with only taking off the day after infusion and timing the tx on Thursday so I can rest up over the weekend. I will be done by Christmas, which makes me happy.


    To gather a feel for what chemo is like, you might want to read through some posts on the October 2013 chemo thread, or if you know you will be having a certain chemo regimen, there are also threads devoted specifically to those.


    Keep us posted on plans for next steps!

  • keepthefaith
    keepthefaith Member Posts: 856
    edited October 2013
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    Thanks Teamkim,

    We are the same age and also post menopausal. I am glad to hear that you are doing well on your regimen. I have read a little about Armidex instead of Tamoxifen, but don't know if that is an option.  My MO seems to think my onco score will be high anyway, but I just want to make myself feel better, I guess, moving forward to make sure I have all of the information I can to help with my decisions. I would like to be done with chemo by mid January as I want to go to celebrate my Mom's 80th bday in Tucson in Feb.,  with the rest of my family, whom I haven't seen in years! We will see...so far I feel blessed, so if it is meant to be, it will happen!

     

     

     


     

  • uds17
    uds17 Member Posts: 100
    edited October 2013
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    taguekids6- enjoy the new baby!


    keepthefaith- great news!!


    I am kind of in a funk today. Port placement is in 2 days and I am trying to adjust to this new reality as much as possible. A big stress for me is trying to figure out what to do with my work schedule. MO said that if I get chemo on a Thursday, I should be able to return to work the following Tuesday, so I am rescheduling appointments with this in mind. However, I am not getting a call back from the chemo education nurse at Dr's office so don't know yet when chemo will start. I'm just frustrated because I'm trying to retain as much control over things as I can during a time when I really don't have control over much of anything.


    Sorry for the rant.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited October 2013
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    uds17, I don't blame you one bit for feeling frustrated. So happy for you KTF! Welcome Anniee!


    Will share about my latest visit at some other point--so tired right now. Hugs and strength to you all!

  • taguekids6
    taguekids6 Member Posts: 32
    edited October 2013
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    Uds17, {{{{{HUGS}}}}}


    keepthefaith, YAY!!!!!!!!!!!!!!!!!!!!!!!!!!


    Anniee, welcome!


    Question for those already on Tamoxifen, started today and had discussion with my MO about the depression issue. I used to be on Lexipro and asked if I could go back on it. He wants me to try Effexor. Anyone here on it or tried it?


    Thanks ladies......on a personal note........fs LOVES his baby sister, she on the other hand, could care less about him. So cute.


    Kimberly

  • keepthefaith
    keepthefaith Member Posts: 856
    edited October 2013
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    thanks ladies!

    uds, I hope you get things figured out with your work schedule. That is hard.

    taguekids, so glad the kids are doing well! my baby sister took Tx several yrs ago when she dx'd at 28  and quit bc she said she was turning into someone she didn't like. I don't think she ever took anything else after. She is fine now physically, but has had bouts of depression. I hope you find something that helps!

    ((HUGS))

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited October 2013
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    I'm taking Effexor to lessen my hot flashes. I have no problems with it.

  • taguekids6
    taguekids6 Member Posts: 32
    edited October 2013
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    Thanks ReneeinOh and keepthefaith!


    Kimberly

  • Trish318
    Trish318 Member Posts: 2
    edited October 2013
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    Hi 2013 Sister Warriors I am joining everyone here as well I was Dx on 10/3/2013 with IDC STAGE 1 GRADE 2 ER+\ PR+\HER2 - I am having lumpectomy on right breast and reduction on both breast. Surgery will be on Oct 30 Doctor recommends 6 and 1/2 weeks radiation and 5 years tamoxifen I am 51 years young will know more after surgery good luck to all the warriors I have been reading about on here you sure are helping me thru this

  • LizzyinMI
    LizzyinMI Member Posts: 34
    edited October 2013
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    I am also taking Effexor for hot flashes. No issues with it either.


    I guess I'm on the final stretch of treatments. Saw all my Dr's this week. BS for surgery follow-up, MO for checkup and Arimidex prescription, RO for pre-rad checkup. Rads start on Monday, had my simulation this morning. Thinking I might be a little crazy for making my rad appt. for 7:20 am, especially since I dislike getting up early. Oh well, only 33 days of that (for some reason 33 days sounds better than 6 weeks!)


    Curious, anybody else here have chemo before surgery and have the tumor disappear completely? My MO said there is only a 15 - 20% chance of that happening in early stage BC. And why, since I'm in that 15 - 20%, am I still scared?

  • ndgirl
    ndgirl Member Posts: 950
    edited October 2013
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    Hi Lizzy, good luck with treatments. I have not gone thru what you are doing, but my best friends sister had chemo first then surgery and she has been cancer free for over 5 years! I chose to have a mx for various reasons and think it was right for me. So far the arimidex is not causing too many se's. but it has only been about 6 months too. Is so agree for some reason 33 days sounds better doesnt it? I remember saying the very same thing when I was making my decisions... I remember saying to hubby.."it is only 30 days of my life". And I dont like getting up early either!! but we do what we have to do... we are all in the same boat here.. arent these boards the best for us!! Dont know what I would have done without them.. I have learned so much, and I wasnt blind to bc as my Mom also had it. Thinking of you as you move forward.

  • LizzyinMI
    LizzyinMI Member Posts: 34
    edited October 2013
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    ND - Glad to hear your SE for Arimidex aren't too bad. That has me a little worried. Especially since it's for 5 years. Or longer - by the time we get through it, 10 years may be protocol. Who knows. My MO gave me the script yesterday but told me not to start taking it until I'm done with rads. She doesn't want me blaming any rad SE's on the Arimidex and then decide not to take it!


    My mom also had BC, twice. She had a LX and mamosite radiation with the first go around and Arimidex. And only a LX with the second. But she was 75 with the first DX. I'm 49 and learning so much! May sound dumb but since I went to so many appts. with my mom, when I was diagnosed my choice of Dr's was a no brainer - I have all the same ones my mom had. The nice thing was I didn't have to build a relationship with some new Dr while I was dealing with the shock of BC.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited October 2013
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    Hi brave warriors, and welcome to our new sister Trish.


    OK, so I am at the point where the frequent dr. visits aren't happening anymore, so at the center I go to they do what is called a "survivorship" appointment. (I guess this concept came through the Livestrong Fdn., because after going through treatments, appointments, that it feels off-putting to all of a sudden all of that stopping.) I didn't know what to expect--I thought it would be a rundown on what else I can do to reduce possibility of cancer returning. I met with my onc nurse, who revisited my dx, tx, and had exercise and nutrition guidelines in writing for me to take w/ (basically something you'd give for a heart healthy diet), and talked about my emotional state a bit. So, that was OK, but I hoping for a--be sure to incorporate these foods into your diet, meditation is a great idea, etc. What really weirded me out was her saying, you know, if you get a headache that won't go away/can't be linked to a flu, have a cough that won't go away, unexplained weight loss--any kind of symptom along those lines...that I should come in to be checked out. What I realized, and said to her was, oh, those are symptoms of cancer spreading, right? And she confirmed that. It's kind of disheartening to hear that, after all that we do, and continue to monitor, that there is still a chance it can come down to that.


    I don't mean to scare anybody, and hope I haven't upset anyone by sharing this. We are in the same boat, so I think it's important to be truthful. The reality is, for those at an early stage, and are getting these treatments, we've greatly reduced the odds for recurrence. Mine is at 8%, and the nurse said it probably is less than that since I am doing ovarian suppression. We can't live in the fear that it will return. We need to take care of ourselves once we've gotten the beast out of our bodies, and go on with our lives, without cancer be at the center of it. It's kind of weird concept, given how it has totally rocked our world, but I suspect through time, that it will get easier to do just that.

  • LizzyinMI
    LizzyinMI Member Posts: 34
    edited October 2013
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    A follow-up to my post on Effexor from yesterday morning. As I stated, I've been taking it for hot flashes since March and am doing fine on it. However, my prescription ran out and I went a few days without it until I saw my MO on Thursday to get the script renewed. I also got a flu shot Thursday morning. Well, I was feeling really crappy - headache, weird dizziness, just "off". I thought it was a reaction to the flu shot but my symptoms didn't match any flu shot SE's. I did more googling (is that a word?) yesterday afternoon. My symptoms matched those for Effexor withdrawal. Very interesting. My husband picked up my script for me yesterday afternoon and I took one as soon as he got home. Within an hour or so all my weird symptoms were gone.


    Apperantly Effexor can have some very bad withdrawal SE's. From what I have been reading, it sounds scarey. Check out http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome and http://www.medscape.com/viewarticle/506427 and http://www.medicalnewstoday.com/opinions/20689/. There is a lot more stuff out there.


    At this point, I will continue the Effexor at 37.5mg because I want to get past this hot flash stage and I don't need the withdrawal SE's along with the SE's from rads and Arimidex. But I don't want to stay on it long term. I'm thinking I will try go off it after the first of the year into the spring. By then hopefully the hot flashes will have stopped or I will just have to deal with them in another manner.


    Just wanted to give a heads up on the Effexor. I had no idea that missing a couple doses would be so bad.

  • GwennyMD
    GwennyMD Member Posts: 68
    edited October 2013
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    Hi Sister Warriors...........I have been missing for a while. Recovering from BMX and DIEP flap.  Looking forward to flat tummy.  -------------To those worrying about hair, yes it will fall out, it may or may not come back in the same color or thickness and yes it can be traumatic.  It is not vain when you want to keep your body parts and all other attriutes that make you who you are.  It does not matter whether you had short curly red hair, a blond bob, or purple spikes.   I too had long thick hair.  AFter finishing 5 months of chemo in Aug I now have about one inch of silver hair.  It was previously jet black or natural black. I will probably wear wig until I can return it to its natural color.(smile)  ..........I found that some insurances will pay quite well when you get the prescription.  My insurance pays up to $500 for the wig, my friend's insurance paid $350.  I was also told that they would pay for mastectomy bras, surgical bras and related items that were prescribed by onc.  Each company, policy and plan is different.  .......................Welcome to all newcomers. Sorry you had to join our group. .............................UDS 17 .....Stop worrying about work schedule.  Chemo is different for everyone and not all SEs occur each infusion.  I really do not understand why any onc would tell you that you will be out of it for 5 days after each infusion unless you have a very physical job.  I worked throughout my entire 5 months of chemo.  After the first infusion, I slept the entire day.  I went to work the next day. However, chemo is cumulative.  By the end of the treatments you will probably feel more worn down.   

  • uds17
    uds17 Member Posts: 100
    edited October 2013
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    GwennyMD- thanks so much for your comments about work!! I'm pleased to hear you tolerated chemo so well and were able to work throughout the entire process. I'm getting Cytoxan and Taxotere starting in 2 days and am nervous as heck for this first infusion. This whole process is an adventure into the unknown... you know what I mean??


    Ladies, I love being able to come here and vent anonymously as well as gain from your insights and experiences. Thank you!!