Positive discussion about TN

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  • Sassa
    Sassa Member Posts: 1,588
    edited July 2009

    So true, Carolinachick.  I have lost over 60 lbs since being diagnosed (which was my plan before my diagnosis) and now exercise at least one hour a day.  I feel great!

     My oncologist just beams when she sees me and tells me I am doing the best possible thing to prevent recurrence at this point.

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  • kellyless
    kellyless Member Posts: 68
    edited July 2009

    Wow, I never thought of that.  I'll have my 5 year anniversary my 50th year, too.  Awesome.

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited July 2009

    I'll be 59 when I have my 5 year anniversary.  But, I truly feel better right now than I have in years.  The 30 to 60 minutes a day exercise and the good diet and weight lose have made me feel great.  I haven't been this thin or felt this good since I was in my early 30's. 

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  • DonnaLeeLee
    DonnaLeeLee Member Posts: 2
    edited July 2009

    I'm so glad I stumbled onto this website and this discussion forum. Just two weeks ago I was diagnosed with triple negative breast cancer and it's been a whirlwind ever since. I saw our local doctors and since we're only 2 hours from Boston, I was able to make appointments to get second opinions about treatment. Turns out I have signed on to an avastin clinical trial of about 100 participants of which they have around 50 so far. Tuesday, I will spend the day getting lots of tests and hopefully my port, and go back Wednesday for the research biopsy and my first infusion of avastin. It's all pretty surreal to me yet, but hearing about all the various experiences here has managed to wake me up a little bit to what I'm really facing in the months ahead. I won't have surgery until after chemotherapy, so that's several months away yet.

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited July 2009

    Welcome to the club,  it's not the type of club you hoped for but it is a club that offers a lot of hope.  The shock of the early days is really tough.  You may want to join a chemo board to share your experience with others who are going through chemo at the same time you are.  What else are you going to receive besides the Avastin?  If you need any thing from any of us just ask.  We'll do what we can.  This is a great bunch of ladies.

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited July 2009

    hello dears...i am almost 2 years post treatment and so far all is well....my onc told me last week that the 2 year mark is key for trip negs....

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    Hey guys

    Its awsome reading all this positive thaughts.... it really uplifts my spirits. 

    I have been feeling a bit low since i got on the net and found out all the stuff about TN.  I was getting depressed.  after reading this forum, its been beeter.  I am hopeing that i come out of my gloom and start thinking +ve as all u guys.

    +veity required

    Uma

    P.S- surgery in feb.  finished chemo 2 weeks ago. rads will start in Aug. Then.....

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  • greytmom_17
    greytmom_17 Member Posts: 162
    edited July 2009

    I love this thread; nice to meet you, my fellow TN sisters!  Like others have mentioned, joining a "chemo in -----" thread is very helpful. I'm in with the June girls as I started 4 rounds of taxotere/cytoxan June 10.  #3 is tomorrow, then only one more after that!  Yippee!  Then I can get on with scheduling the next step in reconstruction.  Regarding chemo, i've tolerated it very well so far, so don't go in expecting the worst.  Everyone responds differently.  Other than days 2 & 3 after treatment, I am pretty much running normal activities, and am at the gym between 3 & 5 days a week for weightlifting and cardio.  Good luck to all of you who started this journey behind me.  I know it seems insurmountable at first, but if you keep putting one foot in front of the other, you will be amazed at how fast you will be putting this  behind you.

    And thanks to the cured ladies!  (may not be medically correct in terminology, but to me no cancer means no cancer) we all need to hear those stories to keep us going.  

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  • jenn3
    jenn3 Member Posts: 3,316
    edited July 2009

    greytmom_17- I'm glad to hear that you're doing well with chemo.  I am starting in two weeks and have been told by so many people that they can't believe I want to go back to work after starting chemo.  I'm still recovering from surgery and have made the decision that if I'm feeling up to it I'd like to go back to work after I see how I'm affected by chemo.  I know there may be bad days, but I'm trying to keep that attitude of there will be more good days.  My office is more than willing to work with me so I'm thinking why not.  It would give me some sense of normalcy and I so need that right now.

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited July 2009

    It's important to keep your life as normal as possible.  I took off the first week and worked the two weeks inbetween chemo cycles it worked out well for me. It felt so good the weeks that I was working.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2009

    I have my chemo on Thursday - I stay home that day only because I finish too late to bother to travel downtown to work, I go in on Friday - usually crash over the weekend, at least on my AC, I did and went back in on Monday.  Had one Taxol so far, and it hit Saturday, Sunday and Monday pretty bad - so I went back in on Tuesday.  Otherwise, no problems with working at all.  Good luck to you.

    Linda

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  • Cottonwood
    Cottonwood Member Posts: 3
    edited July 2009

    Hello All!

    First would like to thank everyone for all the advice...it certainly curb my anxiety as far as chemo goes. 

    However I got some bad news this week...after a PET Scan, they discovered that two nodes in my neck and two (small under a cm) nodes between my lungs lit up.  Also (after a bil. mast.) in June, I have another mass on my chest! Surgery is scheduled for Fri. to place port, biopsy mass and nodes near lungs.  If it comes back positive then I'm moved to stage 4.  My nerves are SHOT and fear has set in!!!

    Would love to hear survival stories!

    Thanks for the support!

    Danielle

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    jenn3 - I also decided early on that I would try to work as much as possible.  I had my chemo on Wed. (taxotere and cytoxan) and was able to work Thurs. and Fri.  The weekend was rough, but I was usually feeling a bit better by Mon.  I went back to work on Mon. or Tues.  It was good to be able to work and take my mind off everything for a while, and I, too, had an understanding work environment.  You'll do fine, just listen to your body and go home when you need to.

    Cottonwood - So sorry that you've gotten bad news.  You are in my prayers.  Please let us know how your surgery goes - we'll be waiting to hear.  I can only imagine how you're feeling right now.  There are many positive survival stories on these discussion boards, and the plan is for you to be one of them.

    I finished radiation two weeks ago and had been feeling pretty good, but yesterday and today the fatigue has really hit me.  I'm trying to work through it, but I think my old body is just tired after the past seven months of surgery, chemo and radiation.  I'm sure it's nothing that a little exercise, good diet and rest won't take care of.

    Hang in there, +/-'s.  We're about halfway to the weekend!

    Jennifer

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  • jenn3
    jenn3 Member Posts: 3,316
    edited July 2009

    carolinachick-thanks - it gives me more encouragement to hear of others that have gone back to work and were able to do it.

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  • debbie3717
    debbie3717 Member Posts: 4
    edited July 2009

      I had a 3 year old and did it and worked while doing it...I had treatments on wed. that day and the day after I felt fine (thanx to the steroid) but half way thru friday I felt it coming was useless for sat and sun and half of mon. then I started feeling better and went to work on tuesday felt pretty normal for 2 weeks then it was time to do it again...also chemo is accumulative the first 2 were no big deal 3 was bad then I had 3 more pretty bad ones but the time frame for me was always the same only the side effects changed . radiation was a sinch I did that on my way home from work. I would suggest you get the feel of what your time frame will be and for the real bad days have someone come over and help with the kids. CHEMO IS VERY DOABLE for me it was like a bad flu.  I had 6 cycles of T/A/C 7 weeks of radiation...I am stage2a, grade 3, triple neg.

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  • debbie3717
    debbie3717 Member Posts: 4
    edited July 2009

       I have to say if you weren't scared you'd be a nut.  Scary yes, hard yes, but DOABLE very very doable think about a bad flu for about a week after each treatment, 2 good weeks, then chemo again....If you have had kids and/or morning sickness it's like that except unlike morning sickness which is for like 6 weeks straight you get 2 week breaks in between.

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  • debbie3717
    debbie3717 Member Posts: 4
    edited July 2009

      oh great news I go to my appointment 2marO  I don't know when we start counting but I was 2 years out of surgery and treatments on June 28th 2009   it will be a hard day with lots of ups and downs wish me luck  Deb

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  • debbie3717
    debbie3717 Member Posts: 4
    edited July 2009
    THEN......YOU ENDED WITH THEN      I will finish that open sentence with THEN COMES A LONG ,BEAUTIFUL, CANCER FREE LIFE...........................DebLaughing
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  • Debonthelake
    Debonthelake Member Posts: 244
    edited July 2009

    Cottonwood, so sorry you received such frightening news.  My prayers will be with you.  There are lots of new drugs they are trying all of the time so don't give up hope.  As far as using the word cured, my Oncologist told me that after 3 years cancer free I could consider myself cured even if it wasn't official for 5.

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    Cottonwood-  i am praying for u.  Be a positive negitive and fight. Dont give up.... i read about u having 2 kids.  Look at them and DONT GIVE UP!

    HUGS

    Uma

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  • Cottonwood
    Cottonwood Member Posts: 3
    edited July 2009

    Thank you so much for the words of encouragement and the prayers!  I am going in for another surgery today to biopsy the nodes in my chest and to have my port put in! I got great news yesterday 'I have a nice, young, clean brain!". YEAH!

    The unknown is what is so scary, and all of you that have "been there, done that" really help!  Thank you again and you are all in my prayers too!

    Danielle

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Cottonwood - please let us know your results.  Sending good thoughts and hugs your way.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited July 2009

    Cottonwood - I'm sorry I missed your post.  I know we haven't talked in the past.  I've just started posting recently, I am new to this site and new to bc, but wanted to let you know I'm thinking of you and sending you the big HUG. 

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    I'm hoping Cottonwood has received encouraging news.

    A question - how many of you have been tested for the BRCA 1 or 2 gene?  I am waiting results, which seems to take forever.

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  • jax65
    jax65 Member Posts: 47
    edited July 2009

    I was BRCA tested and was negative. It took almost a month to get results.

    Sending out positive vibes to Cottonwood.

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  • angelsabove
    angelsabove Member Posts: 363
    edited July 2009

    I was tested for BRCA 1 and 2. I also was negative. I think it took about 2-3 weeks for the results. I have been wanting to know if you do test POSITVE for that gene then does that mean you have a harder to treat cancer. That was really confusing to me. I too do not post much. I lurk alot. Cottonwood I am sending positive vibes your way........

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  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    From what the genetic counselor told me, if you are BRCA positive it means that your chance of a recurrence of breast cancer and of having ovarian cancer is greatly increased.  Since I had a lumpectomy in January, a positive result would make me a candidate for a bilateral mastectomy and removal of my ovaries.  I'm sure hoping that it comes back negative, but if it doesn't I will definitely go through the additional surgeries.  I don't want to take the chance of having to fight this beast again...

    On a happier note - today's the first day I haven't put on a scarf, wig or hat all day.  I figured that everyone at work knows what I've gone through and can sympathize with my 3/4 inch long hair!  It's been wonderful!

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    Hi All

    Went in for the simulation and will start  rads next week.  Waiting for it all to be over so that i can stop mulling over it all and get on with life.

    Carolinechick- how long did it take to get that 3/4 inch of hair? I mean after u had yr last chemo. Its been a month now for me and i dont see anything on top.

    I am reading books on sprituality and emotional healing.  Will wait and see if it help my thought process.

    Hugs

    Uma

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited July 2009

    Hi gals, I am almost to the 11th Anniversary of my diagnosis of Medullary BC with TriNeg.  I only did a lumpectomy with rads because back then, they didn't know much about Triple Neg.

    Gentle hugs, Shirlann

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  • gillyone
    gillyone Member Posts: 1,727
    edited August 2009

    Pleased to meet you Shirlann - I am planning on joining you at this milestone down the road!

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