Calling all TNs

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Titan- have you noticed the number of hits this thread gets? Wow, we are a chatty bunch!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
    Luv2sing- this thread is so successful that I think it has made the other obsolete!Laughing
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  • Titan
    Titan Member Posts: 2,956
    edited November 2010

    Nah..haven't noticed..just trying to keep up with everyone is keeping me busy!

    I like the turkey talk...we had 5 in our lawn today!  My DH is fascinated with wild life..he was a city boy before he married me and moved out to the country!  I had to stop for 4 deer to run across the road last week..plus my son almost hit one the other night coming home...which scared the heck out of me..

    As far as the "cure" question goes..no one even asks me anything anymore!  Alot of times I forget too!  It maybe be denial but I like it there! 

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited November 2010

    Speaking of turkey talk...it seems like everyone has seen a wild turkey but me and possibly MBJ...lol. I guess I need to get out of the big city more!

    MBJ - your pies look delicious. 

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  • Teka
    Teka Member Posts: 10,052
    edited August 2013

    Hi!

    November 26th, (day 31) my radiation burn felt tender but not raw under breast.

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  • 99Sporty
    99Sporty Member Posts: 24
    edited November 2010

    Hi Everyone.  I'm brand new here, just got my dx on 11/19 and still don't know much.  I do know I'm ER and PR negative, not sure yet about HER2, wasn't on my original biopsy report.  My tumor is grade 3 and about 3.9cm..  I met with my surgeon on Tuesday, she examined me and did not like the look of a lymph node on ultrasound so took a sample, should have that result in a few days.  Not sure yet if starting with chemo first or surgery first.  My first appt with the medical oncologist is not until 12/14.  I am frustrated that a month will have gone by with no treatment..

     I knew nothing about the ER/PR negative diagnosis and was led to believe that it was a good thing by those giving me the biopsy results..  so a sentiment I found in scanning thru this thread seems correct to me- people don't know what it means to be TN. 

     I'm just starting to realize the depth of this situation..  I had myself believing that I'd go thru a couple months of treatment and a surgery and then life would get back to normal.  I guess I was naive and uneducated, I'll need to find a new normal.

     I have 2 little boys, age 3 and 5 - so I need to find my motivation to be strong and do everything I can to fight this in the most positive ways.

     I will probably lurk around here until I know more about what I've got.. then I'll likely be asking lots of questions.  I was pointed here by a friend that is disease free for about 2 yrs now, but she was a triple positive (if that's an appropriate term)  So her journey was quite different than mine will be.

     I'm glad she told me about this place, look forward to getting to know you all.

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Hi! 99Sporty,

    Welcome, and sorry for your feelings of having to wait to see medical oncologist.   Tell surgeon if she is waiting on medical oncologist to please help you get an earlier appointment.   Call surgeon and medical oncologist daily.   You could always say to surgeon and medical oncologist " you would feel different if it was you".

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  • laurajane
    laurajane Member Posts: 321
    edited November 2010

    I received a PM from Lisa (Paldingmom) she says hi to everyone. The brain radiation hurts her eyes and makes the computer difficult for her. Wishing her the best as we all are and look forward to her posts when she is up to it. 

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  • laurajane
    laurajane Member Posts: 321
    edited November 2010

    I've got a lot of catching up to do on posts myself. Just thinking good thoughts about all of you. Hope your weekend was great. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    99Sporty- welcome to the club no one wants to join! I was like you--- thought I'd have a quick surgery then on with my life. It took me a few weeks to realize the "depth" of the situation too.

    It can get pretty "deep" (might even feel like you are drowning sometimes), so hang on to your hat and grab your life preserver. However, when you are feeling particularly frightened and uncertain of your future just remember to take a deep breath, exhale, repeat--- then tell yourself "one day at a time."

    I'm several "days" down the road and things are going well. You can do this.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2010

    99Sporty  - welcome and I'm sorry you had to find your way here.  Lurking is good, as it lets you learn and feel out where you're most comfortable.  When you're ready we're all here to help you with questions, the mad rant, venting or sleepless night posts..... (((hugs))).

    Last night I asked my DD to straighten my Shirley Temple curly hair.  Wow!!! It is longer than what I thought.  It goes down to the base of my neck almost touching the top of my back, my bangs for lack of a better word go down to the tops of my ears.  Funny thing is it looks like it's been cut with many, many layers.  After I kind of "fixed" it, my DD said I looked like my "old" self and I had to agree. 

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  • cc4npg
    cc4npg Member Posts: 764
    edited November 2010
    laurajane:  Thanks for the update on Lisa.  She's in my thoughts.
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  • msjag
    msjag Member Posts: 416
    edited November 2010

    Hello all!  I too am new here, had a lumpectomy 10/22 for 1.2 cm, no nodes,clear margin, path report showed no blood flow thorugh tumor,  bone scan clear, chemo to start 12/2 , 4X  T/C every three weeks.   Two oncs said no proof of ACT working any better than T/C with clear nodes, Her2-.Can be so confusing sometimes!  Its so hard thinking about having chemo when I feel so great, lumpectomy was breeze, back to work in 2 days..no pain...Just so hard getting "cancer" off your brain.   This site is great!! so glad to have found it.  I feel armed with tips for chemo, and love haivng a place to be where everyone knows how I really feel!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2010

    LJ - thanks for letting us know how Lisa is doing.  Please send her my ((hugs)) and let her know we're thinking about her.

    msjag - I am so sorry you had to find your way here, but welcome.

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  • Titan
    Titan Member Posts: 2,956
    edited November 2010

    Hey everyone..and welcome to our newbies!

    Oh yes..imagine my shock after my surgery (and yes there had been talk of chemo/rads).but.. I thought that I was done... that there would be a lump/rads and that would be it...it was like..it could come back?  There could be cells floating around?  Oh well...know better now.

    Jenn3..glad you look like your "old self"...I think sometimes that the "old self" is gone..now I'm just old...

    msjab..so chemo awaits you huh....make sure you join up with a starting chemo group and read the previous months group...it will help you so much get through chemo...I'm still hanging with my starting Chemo April 09 group and just love them...

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  • TiffanyF4
    TiffanyF4 Member Posts: 171
    edited November 2010

    Welcome new TN sisters!

    Lisa (Paldingmom) you are in my daily thoughts <3

    I get my CT results on Tuesday.....I am sure it's all good, but still can't keep my mind from going ......well you know where METS omg!  Just scanxiety I guess.

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  • kittycat
    kittycat Member Posts: 2,144
    edited November 2010

    Welcome newbies!  I had to get caught up on almost a week's worth of conversation!  Did you all hear that there's a shortage of Adriamycin?  I met this woman at a local wig shop that just started dose dense AC and they had to switch her to a "sister" drug of Adriamycin after her first infusion.  Crazy, huh??? 

    I started rads last week.  So far I'm doing okay.  I hope I don't have any bad SE's, esp with my implants.  I know what you all mean about explaining to people about cancer and TNBC.  I didn't know a lot about BC before my sister got it.  Unfortunately, I've learned more than I ever wanted to know!!!  A lot of people ask me about my prognosis like, "Is the chemo working?" - I feel like a broken record when I tell them that I'm doing the chemo and rads to hopefully keep it from coming back!!! 

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  • riley702
    riley702 Member Posts: 1,600
    edited August 2013

    Amy (Sporty) - I hear you. It took about a month to really getting the ball rolling with me, too and all I could think of was that the delays might kill me. I also had a 'suspicious' lymph node that they biopsied at the same time they did the tumor, and that was freaking me out, too. Thankfully the node came back negative.

    I had a wonderful Thanksgiving dinner with the family on Saturday. On the way back home, though, the 'service engine soon' light came on. I can't afford a big car repair!! All I could think was that I wouldn't be able to get it fixed Sunday, and my rads appointment is early enough this morning that I need to go there first. And my insurance has been difficult with me over what they will and won't cover. And funds are low because my disability insurance is only 60% of my base pay. And I had received 3 three letters from my insurance and radiology last week that I couldn't get up my nerve to open, worried how much they wanted this time. So when I got back home after Thanksgiving dinner, I finally got up the nerve to open them. They were all refund checks! Totaling nearly $600! Wow! That's going to help with my car repair! Apparently, radiology and my docs appealed something that the insurance had initially denied. And they won! The docs got the reimbursement they wanted, and the insurance mailed back a refund of what they had charged me.

    And it happened on Thanksgiving!! I'm very thankful.

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  • kcrews
    kcrews Member Posts: 52
    edited November 2010

    It was 5 years ago this Thanksgiving that my daughter (TNBC) was on the verge of being hospitalized after ANOTHER serious reaction to Cytoxan (she continually fell in the minority). She was in tears at the thought of missing Thanksgiving and not being with aunts, uncles and cousins. It was her first Thanksgiving to be with family after living in Spain for 7 years.

    It was our first Thanksgiving since my dad's passing (he was 91). And my mom was in the hospital with congestive heart failure. ...All that could be done was pray, and pray I did!

    My mom was released from the hospital Thanksgiving morning, Tracy's 100.3 fever suddenly and miraculously dropped and aside from missing Dad, we were all gathered around the Thanksgiving table together....all 25 of us.

    Ladies, I hope 5 years from now YOU will all be looking back and remembering with joy that you have been victorious, offer a prayer of "thanksgiving," and look forward to brighter days and fewer concerns.

    Blessings...

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  • MBJ
    MBJ Member Posts: 4,352
    edited August 2013

    Wow:  So many posts here it will be impossible to catch up!

    For all of you newbies you have come to a place of great empathy and support! 

    Kittycat:  A shortage of chemo drugs????  There is something seriously wrong here. 

    I just wanted to share this not as an alternative to standard of care but as a preventative from future BC.  http://breastcancerchoices.org/iodine.html.  Diet, excercise and supplementation are all good preventatives before and after treatments, but without enough Iodine in our diets, no matter how healthy we are we could succumb to this disease again. Information is POWER!!! http://jeffreydach.com/2009/11/13/iodine-against-breast-cancer-the-overwhelming-evidence-by-jeffrey-dach-md.aspx?ref=rss 

    This is from the author of Anti Cancer: A New Way of Life A Dr. who has survived brain cancer twice!!!:

    http://www.youtube.com/watch?v=lP6uGVrCBWs&feature=related

    Laurajane:  Thank you for the update on Lisa.  Our thoughts are all with her in her continued battle.

    Sugar:  I DID see Wild Turkeys--They just happened to be on someone elses farm.  Wondering if they were eaten for Thanksgiving.

    Wild turkeys, deer and bears??!! Oh My!!!

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  • cc4npg
    cc4npg Member Posts: 764
    edited November 2010
    Kathy:  Thanks for the uplifting post!  I just had my first chemo treatment today and am looking forward to being done.  I've skipped ahead in my mind to one year from now, wondering how much hair I'll have, and knowing I'll be so thankful to be done. 
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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited November 2010

    cc4npg - I started chemo a year ago next week (Dec. 7th) and I have a full head of hair now and have had about four cuts since it grew back.  I'm glad I did chemo.

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  • cc4npg
    cc4npg Member Posts: 764
    edited November 2010

    Me too... I couldn't face the fear of not doing it.  At least I'm doing everything I can.  Good to hear you got hair back really well!!  They've never seen anyone whose hair didn't grow back, but I have read posts from the few who have this problem. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Sugar--- you started and I ended on Dec. 7th (D-Day in this country-- "a day that will live in infamy")

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited November 2010

    December 7th was a significant date for me because exactly 10 years earlier, I was in that same hospital giving birth to my daughter.  She was born on Dec. 6, 1999 in the evening and I ended up having an emergency c-section and was kept in for five days.  It was very emotional for me when the chemo started flowing thinking of the day she was born just down the hall and how I never imagined I'd be diagnosed 10 years later. She's turning 11 a week from today so we're busy getting ready for her kid's party this coming Saturday at a local trampoline club.  She's really excited and I'm in a much better place to be making up loot bags this year.  Last year I was just going through the motions trying to keep things as normal as possible for her.

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  • kcrews
    kcrews Member Posts: 52
    edited November 2010

    Hair?? Hair is what I missed most! And just about the time it was beginning to sprout, I had more chemo and it all fell out AGAIN. As a part of a research trial I was given chemo then surgery. Even with a 100% response to chemo and no live cancer in 15 path slides, I had more chemo---just in case.

    I didn't have my first hair cut for 10 months after shaving my head. And when it was "shaped" it was the shortest "Jamie Lee" you have ever seen! Very cute...but still very short!

    I've been a "prayer walker" for years. As I walked my 3 miles today, I was praying for each of you.

    Blessings...

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  • cc4npg
    cc4npg Member Posts: 764
    edited August 2013
    kcrews:  Count me in anytime you pray please.  I've had it very rough since 2006, and this year with triple negative cancer really added a lot to an already bad year.  I actually pray as I'm cleaning my house, or as I wait for my son to fall asleep. 
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  • Titan
    Titan Member Posts: 2,956
    edited November 2010

    You ladies are just all so wonderful...the support and the fun we have on here..even with the bad stuff...we are truly sisters...

    Paulding mom..I think of you every day...post here when you have a chance..and feel up to it..we miss you.

    cc4png...first chemo done...that's good...you will be done b-4 you know it..really, really,really...it seems to last a long time going through it but really it will go fast...I can't believe I have been done with chemo for over a year...I remember reading posts of women who were done and I was so jealous..I wanted to be done too..to be on the other side..it really does happen! 

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  • patty61
    patty61 Member Posts: 10
    edited November 2010

    I am also triple negative with the initial biopsy showing ER+ & PR+.  Though after surgery (opted for bi-lateral mastectomy due to family history), it was found to be negative.  Start chemo Wednesday, Taxotere/Cytoxan X4.  Really scared of chemo.

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  • Titan
    Titan Member Posts: 2,956
    edited November 2010

    patty61..chemo is scary..just the word "chemo" is scary...I was freaking!  The first one is the worst because you don't really know what will happen, how you will react...it is unknown territory..once you get through the first one (and you will)...you will know what is going on and how to plan for it...try to live as normally as you can...exercise a little if you can, eat what you want..take those anti nausea pills they give you at the first twinge...rest as often as you can..work if you can...I didn't do these things for my family and friends/coworkers..but for myself...it isn't easy..and it certainly isn't fun...but..it really is a short time out of your life...and we are here for you!

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