Calling all TNs

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2014

    I echo what NavyMom said.  I'm saddened to see so many new people on the boards this week.  It always breaks my heart to hear of those that find the lump during pregnancy or while breastfeeding.  I can't imagine having the feeling of such a wonderful event of a new baby, combined with the new knowledge of a bc diagnosis.  You all are so strong, and you will definitely find all the love and support on this site. Thinking of you all, rest easy and know that your medical team will get you through with the best of care.

    Many prayers and hugs!

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2013

    Maggie's comment was interesting, in that it completely recaps how I felt.  I too am Type A personality and immediately chose a BMX.  I didn't even ponder.  I learned of the bc diagnosis on a Tuesday, met my Surgeon that Thursday, and then on Wednesday I had the BMX. 

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  • 5thSib
    5thSib Member Posts: 141
    edited April 2013

    jenjen -- a couple weeks ago when I was having a treatment, but had not seen my MO that day, he walked through the chemo suite to get some coffee and asked how I was. I told him I was having some severe back pain and the nurse had ordered a urine test to check for UTI. He said he would check the results and see if it was negative he would send me for an X-ray. It was negative, so he sent me for the x-ray right after I got through with my treatment. Luckily it was nothing related to cancer. He said it showed scholiosis and a twist at the bottom of my spine and that I would probably need some PT after treament. I also am on meds for pretty severe Osteoporosis in In my lower back. I hope chemo has not made that worse. At any rate, so thankful I have a MO that listens and responds.

    QueenKong -- my next step is rads (probably about 5 weeks or so away). When you say your are "suffering through rads" what do you mean? Are you having issues or just the aggravation of having to go every day?

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  • SherylB
    SherylB Member Posts: 450
    edited April 2013

    Jennifer,

    I don't know what to say except OMG. I am so impressed that you can even post with what you have been through. Your strength is shining through. Congrats on your perfect little blessing. Sending prayers your way.

    Hugs, Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited April 2013

    Sunnyskys,

    Welcome aboard. This is a very frightening time for you and I remember it well. I am 3 weeks out from my final chemo and start rads next week. I made it, there were some tough days, however, it is very doable as everyone who goes through it will tell you. Please come back here often and say whatever is on your mind or in your heart. I equate these threads to journaling. I say whatever I need to say and no one judges they just support and offer prayers and blessings.

    Hang tough, Sheryl

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  • 5thSib
    5thSib Member Posts: 141
    edited April 2013

    Phyllis -- so sorry about your new diagnosis. Hang in there and keep us updated.

    Welcome to all the new ladies. I echo what others have said. This site and especially this forum is great. All the info you need can be found on breastcancer.org and it is reliable info. In your profile, I think you can sign up for alerts for articles that meet your criteria.

    I had #11 of 12 Taxol yesterday. I am so happy to know that in a week I will be through with chemo. I see the RO again next week to set up my radiation schedule. I've already had 2 appointments with her right after my diagnosis and she is great. She takes a lot of time with you, answers questions and draws pictures. She requested BRCA testing since I have a family history of cancer (1 sister with breast and 3 brothers with other types, father with prostate). My insurance denied it. My MO said he will push for some genetic testing after I get through all the treatments.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited April 2013

    Inspired...see my signature line... I worked quickly too



    Katie...there is a metaplastic bc fb page if you want to join. As long as it is metaplastic you can...just have to ask its a private group. Send a request to Bena Roberts



    Maggie

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  • Karietkq
    Karietkq Member Posts: 15
    edited April 2013

    Maggie-

    I found them last night! Did you have one tumor or 2 different ones like me? You know.... Since I think we may be the same person living parallel lives.... Lol

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  • mags20487
    mags20487 Member Posts: 1,591
    edited April 2013

    sorry Karie...it was just one haha.  But that is ok its really close right to the lymph nodes!  And sorry I have been calling you Katie whoops....chemo brain...that is my excuse anyway ;)

    Maggie

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  • Karietkq
    Karietkq Member Posts: 15
    edited April 2013

    Maggie-

    Did they know before hand that yours was MBC? Or only after the path? We're you offered chemo first like most other TN? I was never offered the choice since I have still not seen the oncologist.... I am still glad we got it out so it wasn't hanging around growing but I read all the stuff about shrinking before hand and wonder if it would have even been recommended ..... We had no idea that the second tumor was not IDC until we got the path report yesterday

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  • mags20487
    mags20487 Member Posts: 1,591
    edited April 2013

    I am glad I did surgery first.  Not given a choice of chemo first from my surgeon.  MBC moves so quickly and I am not sorry at all for my choices or path.  Will be 2 yrs in Aug and that is gonna be a big celebration.  Mbc status was known at biopsy 8-11-11 and did not show up on path from surgery 8-23-11(oddly it was not mentioned). Perhaps the lab did not feel the need to mention it as it was the same lab???? no idea. I found an article...do not remember from where that showed that  mbc must be dealt with differently than other TN's and surgery should be the first step  I will try to find the article and post a link

    Maggie

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  • Karietkq
    Karietkq Member Posts: 15
    edited April 2013

    Maggie

    Then, yay! Lol .... Good thing I wasn't given the option as the biopsy surgeon didn't think it was cancer at all and missed it twice (he was really old)

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  • minxie
    minxie Member Posts: 484
    edited April 2013

    I'm having my expander exchanged out for the new implant tomorrow. Last surgery for the expander was a disaster due to discovery that my family had head lice the day after surgery, me going insane trying to deal with it, developing two seromas that had to be drained, and having to take an extra week off work.

    Got over flu from 2 weeks ago, now dealing with my car in shop for a week for new transmission and other car getting broken into and window smashed.

    Please send good wishes that this time surgery goes better! I know there are people out there that have it worse, but I could go for having things slightly improved :)

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited April 2013

    minxie....that is a lot of bad luck! Time for a change...hoping all goes well...the odds are for complete success Laughing

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2013

    Minxie, you'll do great this time.  Smile

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  • 5thSib
    5thSib Member Posts: 141
    edited April 2013

    Minxie -- saying a prayer for you.

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited April 2013

    Minxie: Nothing but positive thoughts coming your way!

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  • gillyone
    gillyone Member Posts: 1,727
    edited April 2013

    Good wishes for today Minxie.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited April 2013

    Minxie...you are so strong and have been through so much already.  Praying that today goes well for you

    Maggie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    Hi ladies - Once again I am several pages behind!  I had a great birthday but then next day was laid out flat with a migraine.  Really??  Turns out that the Tramadol that I was taking sporadically for pain after surgery can cause migraines.  Who knew?!  Anyway one day for the migraine and one day for the hangover.  I got behind on reading!

    I got my last drain out on Friday and last night was the first night since surgery without a bandage!  OMG!  It felt so good! I slept so well that I didn't even have to get up to go pee.

    I will get my new port in next week and start the Xeloda and Ixempra on April 22.  I went to the bco.org chemo pages and read up on side effects.  Yuk!  I printed pages and highlighted the SE's that my MO thinks I may experience.  This is just in case when my sister comes by to check on me, she finds me belly up and moaning about hand/foot syndrome, mouth ulcers, etc.  I'll just hand her the page.  Haha, I doubt it will happen that way or at all, but it's a good way to amuse myself.  Smile

    I have a call in to my MO's office to find out what drugs I will receive with the chemo.  That should be interesting.

    Phyllis

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    minxie - Thinking about you.  Hope all goes well!

    Phyllis

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2013

    Phyllis, hooray on getting those drains out!  Your night of sleep sounds wonderful! How many cycles of chemo will you have?

    I also pulled off my steristrips yesterday.  They've been on since Mar 13th, and hadn't budget, so I helped them off a little.  I was starting to have irritated skin underneath from them. It felt so good to not be itchy again!

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  • Stupidboob
    Stupidboob Member Posts: 345
    edited April 2013

    Hey gang,

    I have a few questions.  Can you share you story if you did Taxotere and Cytoxan together?

    Does the Decadron bother you all and if so how?  I have a very high sensitivity.

    What does NED and MBC means?   I was thinking MBC might be met. breast cancer

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  • mags20487
    mags20487 Member Posts: 1,591
    edited April 2013

    I did them separately...did the cytoxin with adriamyacin.  The decadron for me was a prickle in the girlie parts/bottom that only lasted a few seconds after the injection.  Ned means no evidence of disease.  MBC could mean either metaplastic breast cancer or metastatic (spread to other parts) breast cancer....for me it is metaplastic

    Maggie

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2013

    I did have Cytoxan and Taxotere together, at 3-week intervals for 4 rounds.

    I think I remember seeing Decadron in my file.  I had a Neulasta shot the following day after treatment.

    I did have an unusual side effect, that would probably not be common to everyone else, and I'm not sure which item is the culprit.  I started with dry hands, and each treatment I developed blisters on my hands.  I eventually was referred to a Dermatologist, as each treatment the side effect was more pronounced than the treatment before. 

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited April 2013

    Stupidboob:  I did taxotere, cytoxan and adriamycin all together.  I started Decadron the day before TX, and also had a dose in the IV just before chemo and took it for a day or two after TX.  To my understanding, it is given to prevent an allergic reaction to chemo and to help your body tolerated chemo.  I hated decadron.  I slept terrible while taking it and it added to my emotional rollercoaster ride.  BUT...I would not miss a dose.  I felt that I did fairly well on chemo.  I really think that it helped keep my SE's tolerable.  I gained 22 lbs. But I ate more fatty foods during chemo.  And only felt like getting to the gym on week 3 of treatment.  More bad food + less activity/exercise = weight gain.  Glad to say that 14 of those lbs are now gone and eating habits are almost where they were pre-chemo. ( I used to love fruit-now not so much)

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  • Karietkq
    Karietkq Member Posts: 15
    edited April 2013

    Hi Maggie

    Oncology visit today was good...dr was not overly concerned with the Metaplastic diagnosis .... He was much more focused on the Triple Neg part.... He staged it as 2b and because of some intermittent pain in my shin and collar bone ordered bone scan and abdominal series CT..... This will put my mind at ease... He is sending everything to Duke for my second opinion and he plans on starting chemo in 2 weeks. He agrees that the second breast needs to come off but does not want to delay treatment now to do so..... He also ordered BRCA testing.... He said if BRCA2 pos he will want hysterectomy before 2nd mastectomy

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  • Luah
    Luah Member Posts: 1,541
    edited April 2013

    karietkq: Glad your appointment went well, and it's always good to get a second opinion. If you don't mind sharing, did your doc say why your second breast needs to come off - was this driven by MBC or some other risk factor? 

    Good luck with the scans, nice he's on top of everything. 

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  • mags20487
    mags20487 Member Posts: 1,591
    edited April 2013

    Good you have a plan in hand karie....maybe if it comes back positive you can have both surgeries same time...take surgeons to coordinate but would b nice to b done



    Mags

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  • adagio
    adagio Member Posts: 982
    edited April 2013

    Mags20487 - can you tell me what you mean by "my blood vessels were almost destroyed by radiation" - this scares me. How did you know your blood vessels were affected by radiation? What are the signs of this? I have never heard of it before - is there something I should be talking to my RO about - she never mentioned anything about damage to blood vessels. Just wondering.

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