Calling all TNs

15845855875895901198

Comments

  • browerl
    browerl Member Posts: 126
    edited September 2012

    Sjayne-sorry you are hear.  I chose to have chemo first mainly bc I wanted to know it was working and it has I have had 3 of 6 treatments.  When I was dx my tumor was 1.9 cm by the time I fished all the test and got started it was over 2 very hard and noticeable, after my first treatment it had all ready shrunk below 1 cm, at my last visit my doc could not even find it.  It does give me some peace of mind.  Another good thing is that while I am home recovering from surgery my hair will be growing!  I have also decided to have a total mx I would hate to think I did all this just to have it come back in a next year.  But that is a personal choice.  Good luck on whatever you choose but once you have a plan you will feel better no matter what it is <3

  • JAN69
    JAN69 Member Posts: 947
    edited September 2012

    Jazzy - My MO told me to take  B 12 and Niacin.  Jan

  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    Thanks Jan!! I take B12 but not Niacin. Have minimal SE's at the moment, but have noticed I am dropping things more often...Can't afford to lose use of my fingers since I spend most of my days on the computer and phone....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    Jazzy, I was told to take glutamine by my onco's PA.. little did I know I was allergic.. I spent the worst 8 days of my life swollen, covered in hives and itching beyond control. I have a few pics I took to remind me of how bad it was. I can honestly say it WAS worse than chemo.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    And probably never have been !!!

     

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012
  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    Thanks Lori! I think I just took my first and last dose... The tightness seems to have let up but now I have a sore throat and am still wired.... at 11:20pm with only 3 hours sleep last night and a 10 hour work today. I should be sleeping :-(

  • marywh
    marywh Member Posts: 2,280
    edited September 2012
  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    Cocker, thanks for the chuckle.. I can relate to that cat

  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    Thanks for the smile Cocker! Meow

  • Lovelyface
    Lovelyface Member Posts: 674
    edited September 2012

    As I am trying to read all the posts, one by one - I come across Annie's cat singing, and I burst out laughing, ha! ha! ha! so funny! ha! ha! ha! ..... thanks for the chuckle.  I will write once I finish laughing!!!!

  • DorMac
    DorMac Member Posts: 155
    edited September 2012

    Painting - I still have "chemo brain" episodes, but I think you are celebrating your 32nd anniversary. Am I right? Congratulations! My DH and I will be celebrating our 39th next May.

    Belleast - "Hair blowing in the wind", I seem to remember that feeling. Right now, I am happy that mine has grown long enough that it lays down. Unfortunately, it is growing in the wrong colour (is white a colour or a lack of colour?). It was brunette with blonde highlights (courtesy of my hairdresser) before the chemo!

    Inmate - Really glad to hear that you are breathing better and the skin mets are improving. I hope you get your appetite back and the headaches go away real soon! {{{HUGS}}}

    Cocker - love the cat.

    I don't want to even remember the date I got my dx. I will celebrate my cancerversary on the anniversary of my last tx (June 19).

    Hope everyone is having a good week!

    Doreen 

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited September 2012

    Ladies somebody said to me today nothing is impossible, so you better watch out!!!!

     

  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited September 2012
    A small tourist hotel was all abuzz about an afternoon wedding where the groom was 95 and the bride was 23.

    The groom looked pretty feeble and the feeling was that the wedding night might kill him, because his bride was a healthy, vivacious young woman.

    But lo and behold, the next morning, the bride came down the main staircase slowly, step by step, hanging onto the banister for dear life.

    She finally managed to get to the counter of the little shop in the hotel. The clerk looked really concerned, "Whatever happened to you, honey? You look like you've been wrestling an alligator!"

    The bride groaned, hung on to the counter and managed to speak, "Ohhh God! He told me he'd been saving up for 75 years and I thought he meant his money!!"

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited September 2012

    Too funny, Bernie!

    Love the singing cat, Annie!

    And I read those 50 Shades books...there will definitely be a baby boom!

    Inmate - sending love and hugs, and hope that the clinical trial drug zaps those mets.  Glad you are feeling a little bit better.  I hope the headache is nothing serious.  (((Hugs)))

    I hope everyone has a fabulous day today!

  • Fighter_34
    Fighter_34 Member Posts: 834
    edited September 2012

    Painting-your works are always very pretty!! I wish I was artisitc. I can put on makeup very well. I so want my kids in the arts as well. My son will be playing the cello this year. We are very excited!!

    Bak94-Fingers crossed as well for you and all our other sisters fighting including myself.

    Bell- I know that feeling HAIR HAIR and MORE HAIR.

    Inmate- sending comforting thoughts your way. Enough is enough.

    Minxie-I know the process is long it took a year and a half for me, but I am pleased with the results. Patience. They want things to healing and take shape before attempting to start the process. I have a suggestion if you don't mind, see if they can position your surgery line under your implant it will give you a clearer more rounded smooth breast. Things are still settling out and softening up, but I am still in shock of how natural they look and feel. You can PM with any questions. I have had nipple reconstruction as well as tattooing.

    Tazzy- HI!!!!!

    Smiles to everyone we DESERVE IT!!!!

  • LRM216
    LRM216 Member Posts: 2,115
    edited September 2012

    Interesting article I received through Google alerts this a.m.  At least they appear to be finding out more and more about us:

    http://www.uab.edu/news/latest/item/2709-tlr9-protein-predicts-survival-in-triple-negative-breast-cancer

  • Luah
    Luah Member Posts: 1,541
    edited September 2012

    Thanks LRM ... very interesting study.

    Ladies, I'm going to vent here a bit and if you're not in the mood please skip over.  All over these boards I come across threads where women say they chose Mx because they wanted to do everything they could to wipe out their cancers and stop them from coming back.... as if those of us who choose Lx are somehow inviting a recurrence. Brower and others, I know you don't mean this, but please understand how it comes across.

    I'm really weary that years and years after Lx plus rads was proven to be equivalent to Mx, we are still seeing the same arguments. (It's very interesting to me that Lx appears to be a far more common choice in Canada, where we have single-payer publicly funded medicine.)  Fine if women choose Mx for psychological or emotional reasons, or because their docs recommend it on the basis on multi-quadrant or widespread disease, DCIS or cosmetic reasons - I understand all that and respect it. But could we please not propagate the notion here that recurrence can be avoided by Mx? Because there is no compelling evidence that that is the case! At best, there are some conflicting studies. Here's one, for the record, that suggests quite the opposite for TNs:  http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/5/news_id/3191

    Rant over. Sigh.  

      

  • christina1961
    christina1961 Member Posts: 736
    edited September 2012

    Susan, I love the painting!

    Minxie, I am going for another plastic surgery consult at Emory in Atlanta. The surgeon wanted me to wait until a year after rads before I even visited for the consult.  I am hoping to do reconstruction with an expander and no flap but guess I will see what he says.  I have a really good local plastic surgeon, experienced in reconstruction, who is willing to try it, but my BS was opposed to the idea and wanted me to go to Emory and see what they said about it.   My BS speaks his mind and I value him so much for it, so I wanted to follow his advice.

  • minxie
    minxie Member Posts: 484
    edited September 2012

    Thanks for the encouraging words guys... I gues what steams me is I'VE DONE THIS ALL BEFORE. I had BMX/recon in 2009, after my chemo. I can't fricking believe that this has happened to me twice, that I have to go through this bullsh!t twice, and now thanks to rads, I have the date pushed out even further.

    Luah... Guess I'm proof that a MX won't necessarily keep the cancer away. But I'd still have done it. I am of a certain personality type that could not function if I still had breasts after a BC diagnosis. I know you're all not like me.  Please don't feel that we're feeling superior to you lumpectomy folks - I've had 2 lumpectomies now and a BMX and they're all tough personal choices with no guarantees.

    Sorry to be such a crank today. This delayed recon news threw me for a loop. Right after I heard I had to go to an important meeting. I was in my car, covered in sweat and tears, took the wrong way down the highway... and slept for 4 hours when it was all over. 

  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited September 2012

    Welll in my case I did the Lx, chemo and rads and thought that I had done everything I could to prevent it from coming back and it still did. So then a mastectomy. It's all a crap shoot

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited September 2012

    I, too, did LX and rads and still it came back.  Then I had a BMX, chemo and rads, and yet again it came back.  It is most definitely a crapshoot.  And I can't help but wonder if it would have recurred at all, had I elected to have a BMX the first time around.   But "what if's" get you nowhere, so I try not to think about the "woulda, coulda, shoulda" scenarios.

    Minxie - I hear you and feel your pain.  When I had my BMX, I wanted DIEP recon but was told I didn't have enough fat.  So the PS did TEs.  Then when I went to the PS at Dana Farber, I was told that yes, indeed, I could have DIEP.  And my RO insisted that my left TE be removed prior to radiation.  So I had that surgery and told them to take both of the TEs out because I was going to have DIEP in July.  But wait a minute, I have mets as of May so DIEP was cancelled and now I don't know if I'll ever be able to have any type of reconstruction.   Yup, I feel your pain and it totally sucks. 

    That study that Linda posted is interesting and may explain why someone like me has a recurrence while others do fine.

    No one really knows, at least not right now.  Hopefully, some day, we will get real answers.

  • Tazzy
    Tazzy Member Posts: 2,546
    edited September 2012

    Thanks for the chuckles Bernie & Cocker.

    Have my date for rad planning... September 18 - looking forward to getting this last part (fingers crossed) over and done with and then focus of real healing.

    ((((hugs)))) to all - find your happy today.

  • ksmatthews
    ksmatthews Member Posts: 812
    edited September 2012

    Luah I agree.  I too had a LX and my Dr's have told me that with chemo and rads it is just as good as a MX.  I feel like I made a good choice and I don't regret my decision.  It may or may not come back but as of right now I am NED!!!  I feel very confident with my decision and feel like it has saved me from having to have more and more surgeries.

  • kathyrnn
    kathyrnn Member Posts: 393
    edited September 2012

    Hi guys, just a quick shout out.



    Got punished for my casino trip. Caught an awful bug. (slept for 34 out of 36 hours the first day of it). Finally to the point where it's bearable and poor Mom caught it. Yesterday it put her into respiratory distress and off to the hospital she went. She's doing better now, but will be in for a couple days. Her doctor heard my cough and asked if we'd like double accomadations, lol. Thinking of you all and sending good thoughts your way.

  • JAN69
    JAN69 Member Posts: 947
    edited September 2012

    Luah - Your post makes a very good point, especially for our newbies.  I'm one who is having a healthy breast removed at my own request.  I understand completely that it will not prevent getting cancer in it.  I'm doing it because I am so very uncomfortable wearing my prosthesis.  Running around with one breast dangling is not a good option.  My bc breast had tumors "all over the place" and could not be saved.  So there was not choice for me and at age 68 I really didn't care.  I do understand your "rant."  I think our culture of "if it's bad, get rid of it" plays a big role, and the medical field needs to put stronger emphasis on preservation.

    LRM - Thanks for the study article.  It's very hopeful for our daughters and granddaughters.

    Annie and Bernie -  Thanks for the laughs.  Keep them coming.

  • belleeast
    belleeast Member Posts: 653
    edited September 2012

    painting,dormac,fighter, my hair is about 1 inch in length (almost 8 months since last chemo), still kinda thin esp on top-but i can feel stubbies-yeeeeaaaa! it came back white/grey-white on top. at 7 months post chemo,i used the 28 shampoo dye-med brown on it, hoping it would appear thicker! OMG- big mistake,tried to wash it out ,internet suggestions- OMG ended up with orange looking hair! I resisted the urge to do anything else for 2 months,i went to my salon,had her color it and trim off some of the fuzzies! Have to say looks a lot better,still not thick or long enough for me but it's getting there!! To feel the wind in my hair was like a miracle to me,didn't think it would ever happen!!!

  • JAN69
    JAN69 Member Posts: 947
    edited September 2012

    Kathryn - See there.......Momma said you shouldn't go.  Maybe you'll listen to her next time.  Hee hee

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited September 2012

    Kathy - yikes!  I hope both you and Momma are feeling better soon.  Not good to pick up a nasty bug at the casino - you don't need to be that kind of winner...lol!

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited September 2012

    DorMac you got it right.....took me a pause to figure it out.

    Bernie Ellen great laughs from you.

    LRM216 thanks for the great article. This is such a wonderful resource.

    Christina 19 ...I guess 2 heads can be better than one...who knows.

    Tazzy...congrats it gets easier from here.

    Kathryn...oh so sorry... sounds like oyu only get to lose your money to the medical system this time.

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