Calling all TNs

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  • jenjenl
    jenjenl Member Posts: 409
    edited December 2013

    SUGAR addict right here.  So hard for me I love chocolate.  I've conquered a lot and have some good areas to focus on for 2014. 

  • Jianchi
    Jianchi Member Posts: 237
    edited December 2013

    Tif:  thank you for your encouragement!  I was just so scared.  Never got the fears off cancer spreading, I guess.  I need to learn to enjoy the life day by day, I guess.  

    Merry Christmas!

  • simplelife4real
    simplelife4real Member Posts: 341
    edited December 2013

    Jianchi, I hope you are feeling calmer about the blood in your stool and feel like you know what is causing it now.  I know how symptoms can be scary.  I developed a wierd bump on my back during my Taxol chemo and I was checking yesterday to see what pictures of skin mets look like.  I have an appointment with a dermatologist about it, but it's not until March.  I haven't seen my MO yet since this bump appeared but her nurse practicioner thought it was a plantar wart (I've never had one before).  I see my MO on Dec. 31 when I get my next AC infusion and I'm going to get her to take a look at it, just to see if she is okay with me not seeing the dermatologist until March.

    I can't even imagine how freaked out I will get the first time I have a chest cold.....I'm sure I will be positive I have mets to the lungs.  Learning to live with TNBC is really a process.

    I was having real bad steroid crashes with each chemo and I finally asked for some Ativan to help take the edge off.  It has helped with my crashes and I can also take one for nausea.  Before breast cancer, I wasn't on any prescription medication, but I just think going through treatment is rough enough as it is without the stress of stress being thrown on top of it.  I figure this is not a time for me to try to tough things out.  

    If it wasn't for these boards, I would have never thought to ask for something to help ease the emotional hell I was going through with those steroid crashes.  

    Thank you to everyone here for helping me see that I can get through my worst chemo days and that I'm unusual  when I worry that   the bump on my back might be a skin met.

  • Jianchi
    Jianchi Member Posts: 237
    edited December 2013

    simplelife4real:  thank you for your nice words.  I feel better today.  I sure hope the bump is not skin met for you.  We all live and learn.  

    By the way, if you haven't seen the movie "American Hustle", you should go!  I watched it last night, and enjoyed it!

  • Stupidboob
    Stupidboob Member Posts: 330
    edited December 2013

    After the year from hell, I finally got some good news........thank you Lord.  The doctor called and No Cancer..............yay.   She said I have radiation changes, and my thyroid has probably inflammation but as far as cancer it looked good.    YAY.......thank the Lord

  • simplelife4real
    simplelife4real Member Posts: 341
    edited December 2013

    Stupidboob, Awesome, Awesome, Awesome!!!!

  • jenjenl
    jenjenl Member Posts: 409
    edited December 2013

    Yay...so happy to hear that fabulous news!!! Celebrate tonight :)

  • tekwriter
    tekwriter Member Posts: 74
    edited December 2013

    That is wonderful news!!!

  • tekwriter
    tekwriter Member Posts: 74
    edited December 2013

    This  is not a serious problem but I could use some advice. My supervisor is an idiot. I  have tried to explain my diagnosis to her and convey the seriousness without going into a pity party for myself. I had explained I might be in chemotherapy for a year.  I did give her permission to tell the team about my condition at the team meeting this month. (I had been on leave on an un-related issue when I found the lump).  At the meeting she told them then told them I might be back at the end of January.  When one of my friends called me she first asked how my head aches were.  Then asked a couple of questions.  She said she had no idea how serious it was because of the way she told them.  They all thought it would be told big deal.  She was absolutely floored when I explained to her. I guess I could use some advice on how to get through to this woman.  Thanks

  • Jianchi
    Jianchi Member Posts: 237
    edited December 2013

    stupidboob: congratulations!  Best Christmas gift!

  • TifJ
    TifJ Member Posts: 804
    edited December 2013

    WOO HOO Stupidboob!!

    Simple- I had a small bump on my back before chemo and during chemo it got bigger and bigger. I asked my husband to look at it and he pushed on it a little and it exploded all over him- sorry, really gross I know!! Turned out to be a subaceous cyst. Hope yours is nothing special!

  • charusa
    charusa Member Posts: 13
    edited December 2013

    Congratulations Stupidboob!!! I am so very happy for you....

  • simplelife4real
    simplelife4real Member Posts: 341
    edited December 2013

    Tekrwriter, I don't know why some people do things like what your supervisor did.  My guess is that she somehow thought she was protecting you or your privacy....either that, or it is hard for her to accept what is going on with you.  I also believe that  many people that have never had breast cancer have no idea about the different kinds of BC and how treatment varies a lot depending on the type.  I know that I was really ignorant about all of that before my diagnosis and I was an RN.  

    With most people, I don't try to explain how serious my cancer is, but there was one person in particular that I needed to get my point across that this cancer was really serious.  I just kept sending her info about Triple Negative BC and after a few weeks, she wrote me back saying "I get it".  I'm still not sure she does, but at least she might have a bit of a better understanding.  

    Since you are starting AC in a little over a week, maybe you could just send your supervisor a link to the AC information. http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/AC.aspx

    If she bothers to read the side effects, she might just get a clue.   You could also maybe send her a memo outlining your treatment plan with estimated dates for each phase of treatment.  Just a thought....

    BTW, I'm sure there will be a January 2014 chemo support thread if there isn't one already.  It's for anyone starting chemo in January.  Those threads are a big help!  It's nice to know you are not the only one going through it.  I'm doing AC right now.  I had AC after 12 weeks of taxol neoadjuvant therapy so I was a little worn down going into my AC, but it has all been managable.  Everyone seems to react a little differently to it.  For me, I sleep a lot the first week after AC and start to pep back up during the second week.  I hope your treatments go well for you.  I know I actually felt better once treatment finally started.  It was all that waiting for test results etc that was so hard.  Once chemo started, I felt like I was moving in the right direction.

  • JAN69
    JAN69 Member Posts: 731
    edited December 2013

    Merry Christmas to All.  May we all have a joyful celebration and we all stay NED all year long.  Janice

  • jenjenl
    jenjenl Member Posts: 409
    edited December 2013

    Agreed.  Merry Christmas.  I'm ready for you 2014.

  • LanaM
    LanaM Member Posts: 41
    edited December 2013

    Merry Christmas to all! 

  • simplelife4real
    simplelife4real Member Posts: 341
    edited December 2013

    Merry Christmas to all my new sisters! 

     I'm the only girl in a family of three boys and I always wished I had a sister.  Last night, as I was going to bed on Christmas Eve I was feeling a  sorry for myself about having cancer.  Then, I realized that having breast cancer gave me a whole world full of sisters and my TNBC sisters are the most special ones to me.  

    Thank you to the women who have gone before me on this journey and are here providing support and encouragement today.  May we each have a good day today however we chose to spend it.  May we also each take a moment to honor in our own way our sisters  that have passed on from this disease.  They have also taught us courage and grace.

    My AC chemo side effects don't stop for Christmas.  This morning, I woke up with constipation and nausea!  First thing I did was get my antiemetic medicine, a glass of water with Miralax, and a cup of coffee (my constipation cure) and settled down to listen to pretty Christmas music and journal about all the things I'm grateful for today while I wait for everything to work.   Happy 

  • TifJ
    TifJ Member Posts: 804
    edited December 2013

    Merry Christmas! May you all have a very special day!!

  • lookingforward66
    lookingforward66 Member Posts: 148
    edited December 2013

    simplelife4real

    Thank you for your comments. I have a sister but she is very disconnected. I feel the same as you. You are all my sisters. You understand my ups as well as downs. Thank you all for all your support this year. May we all continue out journey in health throughout next year!  Merry Christmas to all of you great Ladies & one gentleman may we all continue to flourish!!

    Marsha

  • Gwenie56
    Gwenie56 Member Posts: 23
    edited December 2013

    Simplelife4real ~ I agree with the sister saying you posted, and I love ❤️ knowing I have all of you to share TNBC life with!  I read postings everyday and think/pray for each of you as my heart leads...it is good for me to know that someone else either knows what I've been through or is where I am at in my journey.  

    When I was first diagnosed (2/24/12) my precious daughter and I were planning her wedding which was to take place in 2 months (5/5/12). I started off with the whirlwind testing and port placement/lymph node bx and then immediately A/C every other week.  I would be steroid high and rushed to do taste tests and look at flowers ~ then the low would hit and my girlfriend and daughter would drive me around (with blankets, pillows, water, throw up bucket and pills) for dress alterations and bridal showers.  All the while I was surrounded by kind, compassionate and helpful friends and family.  I had two worlds, BC World and Wedding World. Plus, I wanted my daughter's time to be special and not about me. The wedding was beautiful and at the reception they had placed a bed for me in the back room of Union Station (Dallas, Tx)!  I was able to enjoy the evening and even danced some.  She left for married life and I was left with saving my life. (What a fog I was in)  I went on to finish 3 more months of chemo treatment and a DMX followed with 35 radiation.  Whew was I glad 2012 was OVER! 

    It is interesting because when treatment is over then most everyone thinks it's OVER...I went on to have several more surgeries to replace expanders with implants and then to take out a failed implant. (as well at follow up CT's)  As you all know there is no follow up meds for TN unless reoccurance.  So MO said to call her if Ihave pain or headache that lasts longer than 2 weeks.  My deflated breast is no prize and I'm setting up appt's to have opinions about what to do but am leaning heavily on going flat. I can't even imagine how to do this with kiddos still living at home.  You are my heros!! 

    SO ALL OF THIS TO SAY:  You all are my group to process with and feel with.  I do so love and appreciate all your honesty and helpful encouraging words to each other.  It "feels" as if you're saying it to me and I have strength and more wisdom to live this physical battle with. Life does go on, it is just different and in some ways better because I'm more aware of others and more compassionate with their struggles. I know more of what NOT to say and how to listen. I ask more questions and give more hugs. 

    God has shown me great favor in my life, even with the struggles of my TN, addiction in my family and the recent death of my brother, I trust and believe in His grace and timing.  Life is hard but God is good and I am looking forward to 2014 with family and my friends in person and on line here.  

    Dancing hard here in Dallas!! xoxo, gwenie 

    image

  • ALHusband
    ALHusband Member Posts: 342
    edited December 2013

    Ladies I'm sad to report that after being diagnosed, losing our beloved dog, going through a lumpectomy, chemo, a mastectomy and a combo oophorectomy/hysterectomy, fate has chosen to deal my bride yet another blow in 2013. Her dad passed away this week. My how proud I am of her strength. Life keeps knocking her down...BUT SHE GETS RIGHT BACK UP AGAIN. Wow, what a woman my wife Kathy is! Way more than I ever thought I deserved!

  • Stupidboob
    Stupidboob Member Posts: 330
    edited December 2013

    A cute little Christmas poem for us ladies..........(ALHusband share with your wife)

    Merry Christmas To My Female Friends


    If I were ol' Santa, you know what I'd do
    I'd dump silly gifts that are given to you
    And deliver some things just inside your front door
    Things you have lost, but treasured before.


    I'd give you back all your maidenly vigor,
    And to go along with it, a neat tiny figure.
    Then restore the old color that once graced your hair
    Before rinses and bleaches took residence there.


    I'd bring back the shape with which you were gifted
    So things now suspended need not be uplifted.
    I'd draw in your tummy and smooth down your back
    Till you'd be a dream in those tight fitting slacks.


    I'd remove all your wrinkles and leave only one chin
    So you wouldn't spend hours rubbing grease on your skin.
    You'd never have flashes or queer dizzy spells,
    And you wouldn't hear noises like ringing of bells.


    No sore aching feet and no corns on your toes,
    No searching for spectacles when they're right on your nose.
    Not a shot would you take in your arm, hip or fanny,
    From a doctor who thinks you're a nervous old granny.


    You'd never have a headache, so no pills would you take.
    And no heating pad needed since your muscles won't ache.
    Yes, if I were Santa, you'd never look stupid,
    You'd be a cute little chick with the romance of a cupid.


    I'd give a lift to your heart when those wolves start to whistle,
    And the joys of your heart would be light as a thistle.
    But alas! I'm not Santa. I'm simply just me,
    The matronest of matrons you ever did see.


    I wish I could tell you all the symptoms I've got,
    But I'm due at my doctor's for an estrogen shot.
    Even though we've grown older, this wish is sincere,
    Merry Christmas to you and a Happy New Year.


    Save the Earth; it is the only planet with chocolate

  • Stupidboob
    Stupidboob Member Posts: 330
    edited December 2013

    ALHusband your wife has had one hell of a year.   I understand as I lost two dogs and my daddy this year as well, went through Chemo (second times) and radiation.   I hope she has a better 2014

  • Gwenie56
    Gwenie56 Member Posts: 23
    edited December 2013

    Jenn ~ I am so sorry about all you're going through. You've had a long hard last 3 years. Sending hugs.

    Al ~ Your wife is truly blessed having you to share life with. 

    Stupidboob ~ I loved the poem, gave me a laugh. Thank you. 

    gwenie 

  • sugar77
    sugar77 Member Posts: 1,328
    edited December 2013

    Hi Ladies,

    Popping in to say Merry Christmas.  I don't post often anymore but do check in from time to time and follow how you are all doing.  Four years ago to day I was bald for Christmas wearing a beany cap to keep my head warm.  Hope you all had a nice day.

  • simplelife4real
    simplelife4real Member Posts: 341
    edited December 2013

    Jenn, I'm sorry you are having to deal with these recurrences.  That is a lot to deal with over the last three years.  It makes sense that you are sick of this disease at this point.

    Sugar, congrats on your 4 years.  I just spent Christmas basically bald and wearing caps to keep my head warm.  

    Al, my heart goes out to both your wife and you on the loss of her father.  That's particularly hard right before Christmas.  

    Stupidboob, thanks for the fun poem!

    Gwenie, let us know what you decide to do about surgery.    I'm struggling with the whole surgery decision right now.  My initial surgery will be in Feb. 2014 and I'm just trying to learn about all the different options and the pros and cons of everything.  I have an appointment with my surgeon on Jan.15th and I feel like the more I know, the more comfortable I will be with whatever decision I make.

    Kay

  • Gwenie56
    Gwenie56 Member Posts: 23
    edited December 2013

    simplelife4real / Kay ~ I applaud you for discussing the different options and finding this board before making decisions.  I probably would have made the same choices I did in regards to getting expanders and at least trying the implants after radiation.  It looks like you and I followed the same track of treatment except I did the A/C first, 5 treatments every other week, then the Taxol for 12 weeks.  My BS and MO decided the best for me was DMX due to many hot spots in the other breast and TN being so aggressive. What are you thinking about having done?  

    I have an appt. tomorrow with my MO to check on some irregular skin moles that have come up in the area where my lump was first found in my middle chest wall area. (could they be skin mets?)  I know that a good attitude and positive outlook is desired with pre/post recovery cancer healing so I am daily living in the moment and trying to enjoy every moment AND THEN I feel something that hasn't been there before...my mind starts racing and I have to get it checked.  On the rational side I argue with myself that I used to suntan and since I am fair toned it is probably sun damage and nothing to get all worked up about. My MO has told me to stay off the internet but I do come on here!!  Good information and fellowship. 

    Still dancing ~ gwenie 

  • Kbuntain
    Kbuntain Member Posts: 1
    edited December 2013

    I have a question. I am new to this site. I have completed my 4 rounds of AC and tomorrow will begin my 12 weekly rounds of Taxol. I have not noticed much change in the tumor size with AC. Just wondering if the taxol will shrink the tumor more than the AC did. Anyone with similar experience? 

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited December 2013

    Hi all you amazing women and husbands out here, I am popping over to wish everyone a Merry Christmas. I was diagnosed over 2 1/2 years ago and am here to say life continues, gets better and there will be merrier holidays, different and a new normal, but once active treatment is over life settles down. Love to you all. I used this site as my lifeline and know what a fabulous resource it is. Peace.

  • bak94
    bak94 Member Posts: 652
    edited December 2013

    So sorry to hear of the hardships some of you are going through. Alhusband, your wife has been through so much, but fortunately she has you to lean on, what a blessing. I know that it is hard on the hubbies also. My hubby has been rock through all my crap, but I know it is hard on him. Make sure you do take some time for yourself, go get a massage, go fishing (if that is your thing) or whatever you like to do.

    Stupidboob-you have been through so much as well, things have to get better, right? We deserve some good!

    kbuntain-for some reason some respond much better to taxol, so you very well may be one of those people! There are also other chemos. Have you asked your doc about adding avastin? I had a complete response with ac followed by abraxane with avastin. I am not even sure if insurance will cover avastin anymore but it may be worth asking.

    So, UGHHHHH!!!! I had my lumbar mri this morning. I am about to go into full panic attack waiting for results, which will probably be Monday because my doc is on vacation until then:(  I am not even sure if the mri I had will show cancer, because they did not do contrast with it. Does it have to have contrast to show cancer? I have mychart so I am wondering if the results will be posted there tomorrow?? Tech said results would be ready tomorrow, but I would have to wait for my doctor. When I had an xray the results were posted on mychart, so I am not sure. Oh, and as the tech was questioning me I remembered that my goat had knocked me down a while back and I landed on my left hip, so lets hope this pain is a goatie injury and not cancer!