Calling all TNs

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  • OBXK
    OBXK Member Posts: 791
    edited March 2012

    Painting - I am so sorry to hear of your cousin's dx. I hope it is treatable. Do they think it is a primary tumor? Sending good thoughts her way. Enjjoy your visit from your kids; may they run a great race, in perfect weather! Hugs!

  • maywin
    maywin Member Posts: 49
    edited March 2012

    I check in here from time to time, and am so saddened by the losses of LauraJane,Susan, and Mary. Yes, triple negative can be ruthless. But please take hope from my date of diagnosis. I am NINE YEARS OUT as of February! So it's not always a death sentence! I do exercise, but I eat sugar and drink wine and eat all kinds of bad stuff:(

  • onvacation
    onvacation Member Posts: 1,344
    edited March 2012

    Maywin congrats on 9 years!  WOOHOO! Thanks for stopping by and giving us hope!

  • maywin
    maywin Member Posts: 49
    edited March 2012

    Oh as usual I forgot something....a friend of mine in this town was also diagnosed six months before me and she had either three or four positive lymph nodes. She's a TN also, and still doing fine. We both had mastectomies and chemo, she had rads but I didn't.

  • Teka
    Teka Member Posts: 10,052
    edited March 2012
  • christina1961
    christina1961 Member Posts: 736
    edited March 2012

    Painting, I hope you have a great visit with your kids!  I'm very sorry about your cousin, too. I hate this disease. It strikes so suddenly and so randomly. I have a friend who had brain cancer twice.  She is a tough as nails lady who runs a dog and cat rescue. It has been over eight years since it recurred and she is doing great. It was an aggressive type that generally younger people get, but I cannot remember the name.

    Bak, I had all sorts of eye issues, too at the end of extended treatment - last chemo was 2/17 and even my constant tears have begun to dry up!  I had a lump on top of my eyelid, then pink eye, then herpes simplex next to my eye - BUT now I am fine!  I think some of it was caused by my eyelashes falling out then when they tried to grow again, the surrounding oil glands became clogged. I started using baby shampoo on a Qtip to wash my eyelids every night.  This helped tremendously.

    Best thing that happened to me today was getting out in the sunshine and walking/jogging 4 miles.  I felt very positive while jogging, like my old self.

     Maywin, Thank you and congratulations, too!

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2012

    Maywin - congratulations on nine years...you are an inspiration. Thanks for letting us know.

    The best thing today was visiting my mom for the weekend to celebrate her 79th birthday. My daughter and I took her shopping. She's on oxygen 24/7 and uses a walker because she has congestive heart failure (but no history of breast cancer, thank goodness) so she doesn't get out much. She was so happy to hit the mall and was such a trooper shopping 'til she dropped.  

  • Titan
    Titan Member Posts: 2,956
    edited March 2012

    Happy St. Pat's day everyone!..I used to go out and party the night away on St. Pat's day but now I'm sitting at home talking to you and watching basketball....times have changed...lol

    Beacher..I wish I knew what to do after treatment...the only thing I can say is to exercise, try to eat right and possibly put this behind you...being active physically and eating good stuff helps with the mind as well as the body... every time I start freaking out I just go for a jog..did alot of jogging with the news of Suze, Laura and Mary...

    You guys may be interested in the story of a couple of co-workers..One is TN and 8 years out (or more)...another has just been diagnosed..lobular but estrogen driven..two tumors in her breast...anyway...the other tn and I have been talking to her about things...kinda ironic but my tn co-worker is positively convinced that being tn is better than er positive because we don't have to deal with tamoxifin...my just diagnosed co-worker is already freaking out about taking it... saying it causes uterine cancer, etc...

    I just find it a little funny that a tn is actually thrilled that she didn't have to take tamoxifin...

    Maybe we should be too????

  • Titan
    Titan Member Posts: 2,956
    edited March 2012

    Sugar..my mom is 77 and gets short of breath..she thinks it is because she is "chubby"...They can't find anything wrong with her so maybe she is right

    My Dad and Mom took my DH and I to a casino last night..remember I told you that they gamble and then go to church..(Laura loved that..heh heh)...Anyway, they drove us, and gave each of us $50 bucks..and then drove us home...Here I am..52 years old and I felt like I was a kid again...what fun....the thing is..WHEN..they cannot drive to the casino (or to church..lol)..my DH and I will be the ones taking them...pay back time...

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited March 2012

    Thank you for the welcome a few days ago. I wish that none of us had to be here and I am so very sad to read of the grief that this board has had to bear with the passing of 3 cherished members recently.

  • OBXK
    OBXK Member Posts: 791
    edited March 2012

    Titan - I love your family! Sounds like more fun than bingo!

    As for the tamoxifen - for me, it was a terrible drug. Horrible bone pain and fatigue.I only took it a year. My BS says a lot of women who took tamoxifen, have it come back as TN, as I did.

    Sweet dreams...

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

    There are pros and cons to everything. I, too, am glad not to have to take Tamoxifin, as the SEs can be bad and it only delays the fears of recurrence, IMO, by providing a "safety net" for 5 years. Also, it's a daily reminder of "oh yeah, I had cancer". Believe it or not, there are many days when it doesn't even cross my mind; it's coming in here that reminds me (more pros and cons).

  • christina1961
    christina1961 Member Posts: 736
    edited March 2012

    When they found the really low ER receptors (5-10% mod stain) at surgery, my MO wanted me on tamoxifen. I saw 2 other oncologists, both TN specialists - one said the tamoxifen wouldn't do much and if I had problems I could quit taking it, and the other called me low estrogen positive and I needed to take it. I've been on it about 10 days.  My local onc thinks my tumor mutated in response to the chemo.

  • ksmatthews
    ksmatthews Member Posts: 812
    edited March 2012

    Maywin thank you so much for cheering us up!!!!!  Congrats on the 9 years out!  I know someday I will say the same thing...

  • TifJ
    TifJ Member Posts: 1,568
    edited March 2012

    Congrats Maywin! I love seeing posts like yours- very reassuring!

    Michelle- I am going to ask my Gyn when I see him next month- he is an awesome guy! If he won't, I will consider the dr. you recommended!

  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    Maywin - your posts are encouraging and uplifting! Something all of us TNs need right now and something only a sister would know. Thanks.

  • bak94
    bak94 Member Posts: 1,846
    edited March 2012

    Christina, I forget, were you at 0% er with your biopsy? I was 3% at biopsy and the were going to redo the test after bmx, but since I had a complete response they do not have any cancer to test. So my mo still wants to start me on tamoxifen. I am thinking of having them send some of my tissue from the biopsy to a different lab and have it re tested. I do not have 100% confidence in the lab since the mistake they made with my mastectomy tissue. My mo calls me er positive, he says positive is positive.

  • ksmatthews
    ksmatthews Member Posts: 812
    edited March 2012

    Well girls the best thing that happened to me today, was my hubby, boys and I had a bonfire in our backyard.  We cooked hotdogs and made smores :)  

    Hope all is well and I hope we all have a great week. 

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

    The best thing that happened to me today is we spent almost the entire day with our grandkids.  It was so beautiful here today and we had a "swing building" picnic in their back yard.  I'm not sure how the weather could have been any better.

  • naan1004
    naan1004 Member Posts: 520
    edited March 2012

    The best thing that happened to me today was reading all the positive posts from our TN sisters who have gone 3 yrs and beyond without recurrence, thank u so much. I know I will do the same every 5 yrs once I'm done with all my treatments and surgery.

  • Dahlia1966
    Dahlia1966 Member Posts: 26
    edited March 2012

    This definitely gives me some hope. Thank you!

  • ATeamNana
    ATeamNana Member Posts: 464
    edited March 2012

    It was beautiful here today.  I agree all the positive posts are certainly an encouragement.  Thanks to those that posted!

    I am two years out and counting on many more:)

    Recent CT Scan showed not liver lesions .... no signs of any abnormalities.

  • christina1961
    christina1961 Member Posts: 736
    edited March 2012

    Bak, I think I may have tested 1% or less ER at biopsy and I had a good biopsy - they did six samples. I remember there was a recommendation from the pathologist writing the report at that time to retest for ER following surgery - it almost didn't get retested. I'm sending you a PM.

  • Fighter_34
    Fighter_34 Member Posts: 834
    edited March 2012

    Such a sad week.

    I already donate to the American Cancer Society through payroll deductions. Suze was such a pretty lady. Just as I imagined. I lovely bob cut and a soccer mom at heart.

    I will donate to BCO.org in Mary's honor, and I SHOULD I come here so often for support that I generally forget to support. Can I blame it on the chemo???

    Please someone let us know about LJ son's fund. It is so hard to loose a mother. No one cares for you like a mother can. That is my biggest prayer, PLEASE let me raise my kids so that they do not become someone else's burden. 

    I planted Pansies(?) over the weekend. They look GREAT and have added so much color and life to our front yard.

    Stay blessed ladies and enjoy spring, and count all your blessings!!!!

  • TifJ
    TifJ Member Posts: 1,568
    edited March 2012

    Nana- Great news on CT scan!!

    Fighter- I need to get out there and start planting. My husband has done quite a bit in the vegetable garden, but it's my job to do the flowers! I think it is still a bit early for most flowers here, so maybe I can procrastinate a while longer!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012
    Donations to assist Laura's children with estate expenses and/or Joe's education will be greatly appreciated and can be made to either the Laura Shively Benevolent Fund or the Joseph Shively Education Fund, both at Key Bank (418 S. College Mall Road Bloomington, IN 47401).
  • Sugar77
    Sugar77 Member Posts: 2,138
    edited March 2012

    Heidi - do you know if there's a way to donate to the education fund online? I was going to send you a PM but since you just posted a few minutes ago, I thought I'd check here.

  • naan1004
    naan1004 Member Posts: 520
    edited March 2012

    Ormie on vimeo http://vimeo.com/m/27256955

    Something funny to enjoy, have a great day all!

  • Lovelyface
    Lovelyface Member Posts: 674
    edited March 2012

    christina and bak - I just wanted to chime in and tell you that I was also 5% positive for Progesterone (PR) not Estrogen.  My Onc. said he was going to twist my arm and make me take aridimex, since I am post menopause.  I took aridimex for first 2 months, perfectly.  It made me look really pretty and I was losing weight, yes losing, not gaining like others.  But after 2 months, I experienced the SE from hell.  I could have become severely disabled.  My right arm was stiff and very painful. I was told that I had carpel tunnel, and my nurse argued with me that it was caused by typing for 30 some years.  I was shocked.  It was100% from aridimex, no doubt.  The pain in my right hand/arm went away after couple months. I think my back hurts today because of what aridimex did to me, that is it somehow deteriorates your muscles, bones or something, especially TN's.  I stopped it.  My Onc. was not happy, but I think aridimex drastically reduced the hormone levels in my body.

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

    Donations to assist Laura's children with estate expenses and/or Joe's education will be greatly appreciated and can be made to either the Laura Shively Benevolent Fund or the Joseph Shively Education Fund, both at Key Bank (418 S. College Mall Road Bloomington, IN 47401).

    To donate to either of the two funds listed above you must send a check to the branch address above, attention "Karen" (she knew LJ) and specify which fund you want the money to go towards: benevolent (pays for funeral expenses, etc.) or educational (goes towards Joeseph's education). He is 18 and, as some of you may recall, LJ had hoped to live to see him graduate.

    You can specify if you want to be anonymous or named in the donation, and if you want a receipt for tax purposes.

    If you wish to have any further information beyond what I have provided the bank's number is:

    (812) 331-0600

    In conclusion, I sent the following email to the Wonderlab:

    Hi Courtney,

    I spoke to you last week about a bench in memory of Laura Jane Shively, landscape architect.

    It has come to our attention at breastcancer.org that two funds have been set up at Key Bank in Bloomington for LJ's expenses and her son Joseph's educational trust. Since these are already set up, the decision has been made by the gals in BC.org that donating to either of these existing accounts would be the best course of action for us to take, as they represent LJ's concerns and wishes.

    Therefore, we will no longer be pursuing the bench. I *am* hoping that her daughter Sarah might still be able to place a limestone plaque in honor of her mom somewhere in the Wonderlab Garden, and I will be suggesting this to her as well.

    Thank you for your time and consideration in this very sad matter.

    Regards,
    Heidi
     

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