Calling all TNs

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

    Hey there Wrenwood ....

    We are actually in the Forum Called:  Triple Negative, but the Topic is:  Calling All TNS. If you scroll to the top of the page, you'll find it.  Now, to search for members, the easiest way I know is to click on the search box to the left at the very top of this page.  There is a menu on the left.  Click that search button.  Then, the page it takes you to, gives you two options.  To search via key words or member name.  You can plug in the members name and find their posts.  I did both for Titan and Luv and both came up. 

    Also, wanted to update everyone that Steelerfan got great news today, her brain MRI was normal so they will continue to try and find out why she is having those balance problems. 

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Yay, for Steelerfan!



    Cocker, love your toons, missed them!



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  • monisch
    monisch Member Posts: 57
    edited August 2013

    just want to say I love your your attitude !!!  fantastic... keep it up , your an inspiration to all of us.

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

    just had my stage 2 recon on wed.  back at hotel and feeling pretty good.  pain is minimal.  the girls are not quite there yet...more surgery ahead but so far so good with no complications. 

    Maggie

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

    Oh Maggie, that's wonderful news.  Hope everyone is doing great today ... and Julie, thinking of you!

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  • Wrenwood47
    Wrenwood47 Member Posts: 73
    edited August 2013

    I am an idiot sometimes. I had rec'd notice from another BC.org that they were changing the forum. I thought it was this one. I panicked when I thought I was going to lose this forum and all my "sisters". Sorry for the confusion. I must learn to read more slowly and get all the info. I think I may have "joined" too many BC forums...this is the only one I read daily.

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  • Goldycat123
    Goldycat123 Member Posts: 25
    edited August 2013

    I have DCIS that's non Invasive and had a lumpectomy 4 weeks ago. Now that I just found out I'm triple negative, should I be worried ? Or should I have decided on a mastectomy instead of a lumpectomy ? Do I worry only if the cancer is in the lymph nodes ? These are some of my questions now .....

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

    Goldy - there is no way you can have cancer in the lymph nodes if it is DCIS. There is no reason for you to think a mastectomy is a must because you are TN. Many of us at all stages have had a lumpectomy. There are other things for you to consider if given a choice of MX or LX which usually mean LX plus rads. 

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  • Goldycat123
    Goldycat123 Member Posts: 25
    edited August 2013

    Thanks , yes I agree . What I was wondering if some people might decide to eliminate future cancer by mastectomies since they know they are Triple Negative . Not saying I would do that , but lately most of the women I've read about are having mastectomies to avoid things in the future .

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  • relocatedtarheel
    relocatedtarheel Member Posts: 159
    edited August 2013

    Julie-I am so inspired by you and will keep you and your family in my thoughts. I start chemo in 4 weeks...and I'm getting a bit overwhelmed...are there some of us TN that don't have recurrances???

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  • KSteve
    KSteve Member Posts: 486
    edited August 2013

    Relocatedtarheel - There are many of us that haven't had reoccurences.  One of the fist things my breast surgeon and my oncologist told me about being TN is that while it's a very aggressive type, it also responds very well to chemo.  All of us hope to deal with this one time and be done, but unfortunately, it isn't always the case.  That's why this is a great, supportive place to be.  We celebrate the victories and try to lift each other up when one of us hits a bump in the road.  Good luck with your chemo and don't hesitate to ask questions.  Be good to yourself while in treatment.  We'll be thinking of you!  :)

    Julie - I don't post often but have been following your recent situation.  You really are inspirational with your attitude.  We're all here with you in spirit and hope this truly will be behind you before you know it.  Hoping that the chemo and radiation get rid of this nasty stuff.  Please keep us posted along the way.

    Has anyone heard anything about LuvRVing lately?

    Hugs to all,

    Kathy

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  • OBXK
    OBXK Member Posts: 791
    edited August 2013

    Julie - it sounds like fun at your house!

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  • TifJ
    TifJ Member Posts: 1,568
    edited August 2013

    Kathy, I sent a PM to LUV's daughter last week, but haven't received a response.

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  • naan1004
    naan1004 Member Posts: 520
    edited August 2013

    Goldy and relocated, I think the only person who knows what is to come of us is God and he only gives us what we can handle. Our job is to be more proactive and aggressive when we ask our drs for PET/CT/MRI scans and it never occurred to me that I should've asked for these after chemo, surgery, and radiation even though my nodes were clear. My new onc flipped out and yelled out my surgeon for not requesting these scans saying how they can guarantee it hasn't spread without these scans to confirm it. Blood tests are not sufficient to tell us we are doing well as most of us have experienced and any slight changes to our body we need to be aware of and never ever ignore them, how little it may be. Demand scans, cause American protocol says no scans if nodes clear, but I'm telling u all right now, we are triple negative and don't fit into that protocol! We don't have hormone treatments available for us scans are our only sure way of checking to see that everything is at bay. I don't really want to freak everyone out, but this is our reality until they find a cure it will be a lifelong challenge to keep cancer out of our bodies! Take great care of yourselves, eat right, exercise, think awesome/fun thoughts, reduce stress, get a hobby, and live/enjoy life!

    I intend on being around for my girls' graduations, first boyfriends, marriage, and children, I need to spoil some grandchildren, can't wait! I know they're only 10 and 7yrs old now, but hey that's only about 20 yrs from now, I'm here to stay! I promised my girls that I will do whatever I can to make sure I don't leave them when they are still too young and can't take care of themselves.

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

    Relocated:  The majority of TNBC will never have a recurrence.  I have a pamplet from a foundation to help you with this.  If you provide your e-mail address, I will e-mail this to you.  I send it out often to newly diagnosed members, and will reference the page number that states the majority of TNBC will not have a relapse.  With that being said, at another foundation website they made it clear that the best chance for sucess is with the initial treatment, due to the lack of a specific long-term targeted therapy (like Tamoxifen) so do make sure you have the most aggressive treatment that is available to you.  And to let you know that all things are possible, I know of a lady who was diagnosed stage 3 10 years ago, with 11/13 nodes positive and she is now 10 years without a recurrence.  She did have a mastectomy, chemo and radiation.

    Please send me your e-mail address and I'll attach the literature for you.  

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

    Wrenwood:  Hehe - that's funny!  Glad you can find us and keep us as part of your daily interaction.  :o)

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  • slowloris
    slowloris Member Posts: 128
    edited August 2013

    wow, Stupid computer just wiped out my post. trying again.

    Not so great news with my PET scan. Other than the tumors I knew were on my chest wall, there seems to be some shadowing on the lung and a spot on my neck. MO thnks the lung may just be inflamation from SE of xeloda, no actual spot showing. the neck shows a spot, possibly a lymph node, but both MO and BS could not feel an actual lump.  So... test is inconclusive. could be abnormalities of no concern, or could mean cancer is spreading through the lynph system. I started round 5 of xeloda, will be on it atleast 2 more months before next scan. I feeel kike the rug has been pulled out from under me yet again.  I was really thinking I'd get the all clear for surgery to remove the chest wall tumors. I have NO symptoms of any organ involvement, even pulmonologist I saw 2 wks ago said everything liked great. 2 steps forward, 1 step back... and so the game of life continues.

    Julie, I am so inspired by your attitude. I am the "baby" of 7 children, and I too love my family. They have been so supportive. Even my oldest brother, whom never shows his emotions, has repeatedly told me he loved me. Sometimes it take a tragedy or diagnosis to let those feelings be shared. so greatful for them, and my mom who will be 86 this September. She still wants to take care of her "baby" even though i'm 50.

    I wish the rest of you a wonderful day. It's beautiful here in the Philly area, laundry on the lines, housecleaning being done, school shopping planned, then a nice glass of red wine to enjoy this evening sitting by the pool. Life is good even with complications, and I plan to enjoy every last bit of it. Hugs to all.

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  • lizlori
    lizlori Member Posts: 148
    edited August 2013

    Julie -so wonderful to hear that your family rocks!  Just soak it all in my friend....Way to have a positive determined attitude.  You are cool catCool

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

    Here is a nice list of 20 important vitamins and what each one does - in easy to understand terms.  I found it interesting, so sharing with you:

    http://www.bodybuilding.com/fun/20-vitamins-supplements-to-increase-longevity.htm

    I saw my BS on Thursday.  He wanted to make sure if I was on any medication (which I am, Metformin) to be sure to get ample vitamin D.  He said that many medications rob our body of the D, so to make sure I was supplementing.  I told him that I had actually been supplementing for a year at 5,000 i.u. but had recently gone up to 6,000 i.u.  So just passing along his information in case any of you find it helpful!

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  • lizlori
    lizlori Member Posts: 148
    edited August 2013

    Slowloris, You along with Julie have  amazing strength. The fact that you were able to complete tasks (and feel good about it) says a lot. You are allowing yourself to experience some  joy in life.  I can picture sitting my your pool with a glass of wine, even though I have no idea what you look like..lol..you are making the best of an unfortunate situation. You go girl.  Sending you a great big hug....Laughing

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  • LanaM
    LanaM Member Posts: 142
    edited August 2013

    Found this on Pinterest & had to share. I hope the link works! Lana

    when you feel like giving up...



    http://pinterest.com/pin/274860383481444687/





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  • Titan
    Titan Member Posts: 2,956
    edited August 2013

    Dolce..thanks for the link...I think I have most of the vitamins cover...lol..

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

    Can you post what you take? Maybe we should all share what we are on?  I'll go first:

    In smoothie:  1/2 multivitamin, 2 tablespoons flaxseed, 1 probiotic 90 billion (so it's 30 billion for 1) -- the reason for the half multivitamin is I read that A over 2,500 i.u. could increase bc risk, so since in the pill is A at 5,000 and I didn't want to throw the pills away, I decided to open the capsule and only use half the powder each day. 

    Then throughout the day:  Combo pill: B6/B12/FolicAcid, D3@6,000 i.u. and Metformin x 2

    I haven't added in calcium yet, my BS said D3 when he mentioned drugs robbing bones of their calcium,he didn't mention to replenish calcium but to make sure to have a D supplement.  Maybe the D helps keep the calcium?

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited August 2013

    Naan my heart is breaking for you. Oh , how I wish had a magic wand. There is really no way of knowing anything until things persist. We are here if you need us. Get rest and be easy with yourself. (((HUGS)))

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited August 2013

    "Like" if you agree!

    Bugger. Don't yer just hate Mondays.

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  • Flautalee
    Flautalee Member Posts: 118
    edited August 2013

    Inspired by D. I truly believe that I was being cared for by God. After over a year of being denied by my ins co to have a breast MRI (they said that that was all I needed because I was 10 years out, I met someone new at my church. She said, at least in NJ, insurance companies are required to pay for Breast MRI's for Triple Neg women. She had been involved in pushing the legislation through and was also Triple Neg. When I saw my MO a couple of weeks later, he ordered one. The results were that I either had tissue necrosis from a site where I had had fluid aspirated from a cyst 2 years prior or it was a small new BC. My MO had never had someone have BC return in the same breast after having a mastectomy so I didn't really rush (I waited about 6 weeks) for the diagnostic ultrasound and needle biopsy which of course was BC. The MD who did the ultrasound and needle biopsy said that my tumor would not have shown in a mammo (which I did not have because I had 9 year old saline implants with a usual life expectancy of 7 years). My reaching out to a new member at my church saved my life.

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  • TifJ
    TifJ Member Posts: 1,568
    edited August 2013

    I have been concerned about LuvRving for a while now. What do you all think of doing a "card shower" for her? I have her address- if you would like to send her a card, please PM me.

    Tiffany

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

    Great idea, TifJ.  Please PM me the address.

    I've been a bit quiet for posting but have been reading daily.

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

    Found this about Michelle:  Aug 22, 2013 10:42pm Laurie08 wrote: On facebook her daughter posted that she is doing ok but busy with her move.

    Tif:  Can you confirm that's her new address?

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  • ALHusband
    ALHusband Member Posts: 344
    edited August 2013

    This group needs something positive to read! http://hormonenegative.blogspot.com/

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