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Calling all TNs

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Comments

  • meadow
    meadow Member Posts: 998
    edited July 2016

    Curly, sorry your rads experience was so rough, just so sorry! Glad that is behind you.

    Al, yes, so bloomin' hot here too! We spent a week in your lovely state, down in Gulf Shores. It is my fav!

  • meadow
    meadow Member Posts: 998
    edited July 2016

    Just learned our Purple Minion, who used to post as NotDoneYet, has passed. Her husband posted on FB. She was IBC too, like me, and we posted together on IBC forums. She was brave and smart and wonderful. She has a 16 year old daughter. Just so sad right now. She is an Angel.

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited July 2016

    ((NotDoneYet's family))

    Woo Hoo, Cathytoo

  • SA8PG
    SA8PG Member Posts: 280
    edited July 2016

    Meadow that's so sad. I didn't realize her lung mets progressed so quickly. I really enjoyed her sense of humor and kindness. She will be missed. Rest in peace sweet pink sister. I'll be lifting up her family and all those that loved her in prayer. Going to bed with a heavy heart tonight thank you for letting us know.

    Xoxo

    G

  • TNpotato
    TNpotato Member Posts: 57
    edited July 2016

    Cathytoo - wow! you're almost done! :))

    Meadow - I didn't know NotDoneYet, but she and her family will be in my prayers. Her daughter is a little younger than mine, it's just so unfair, so wrong... Hugs to all who lost a friend tonight.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    edited July 2016

    Hello Katheseward,

    I just wanted to offer words of comfort and encouragement and tell you that you will get through this. Do not believe all the doom and gloom about TNBC.

    I was diagnosed with TNBC back in 2005 and told the prognosis was not good. I sailed through treatment and am now over eleven years out since diagnosis and have never so far had any problems, Stay with these threads where we have wisdom. knowledge and experience. Be positive about negative,

    Fond thoughts.

    Sylvia xxxx

  • Ag23
    Ag23 Member Posts: 28
    edited July 2016

    Lisey- this is interesting. I didn't think that tnbc could also be luminal a. I thought all tnbc was basal like. How does one know is we would be tnbc and luminal a?

    I find this interesting because my tumor did not respond to chemotherapy. Thank you for posting

  • meadow
    meadow Member Posts: 998
    edited July 2016

    TN POTATO and Kath, Welcome! I wanted you both to know I am so glad you found this thread You will find tons of information and support here.

    Ag, I read about a new drug trial for TNBCers whose tumors did not respond that well to chemo. Have you seen it too? I will check for a link somewhere.

    Hugs to all. COCKER, hoping get you are feeling better every day. Hoping the leg is healing. Hugs to you big time.

    Sylvia, our sister across the pond....hello to you too.

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited July 2016

    There are at least 6 subtypes of TN. I had read about it before in a Medscape article, but I can't find that one again. Instead, here is a different one: https://www.jci.org/articles/view/45014


  • Scamp
    Scamp Member Posts: 8
    edited July 2016

    Loving all the support and encouragement. Still managing neuropathy from Taxol and peeling skin from radiation but looking for blessings in each day! Just finished radiation on July 8th and my hair is starting to come back...still fatigued but feeling like myself a little more.

    Three of my sorority sisters have been diagnosed with BC in the last two years, we all are TN...


  • TNpotato
    TNpotato Member Posts: 57
    edited July 2016

    Scamp - Congrats on finishing Rads! woohoo!ThumbsUpHappy And I'm sorry to hear that so many of your friends have been diagnosed as well! Starts to make you wonder, was it an environmental exposure? Something we ate? Probably all of the above...

    Meadow - Thank you for the warm welcome! I would be interested in that new drug trial as well, if you can find a link! :

  • Scamp
    Scamp Member Posts: 8
    edited July 2016

    Thanks TNpotato! I do wonder if its environmental... too much to be a coincidence. Hang in there, HUGS and Take care!!

  • Valstim52
    Valstim52 Member Posts: 833
    edited July 2016

    Welcome to all. I too wonder if it's something that was happening in our late teens and early adulthood that have made some of us more prone to be TN when diagnosed. I have 3 friends all in the last 5 years and all TN. hmmmmmm

  • Ag23
    Ag23 Member Posts: 28
    edited July 2016

    I want to join a clinical trial in NY - problem is that my BCBS New England Network doesn't cover any hospitals in NY. Has anyone ever had luck getting their insurance company to cover an out of network hospital as a in-network hospital for purposes of being in a clinical trial? My plan B is to contact the pharmaceutical company to see if there's some sort of compassion care they can provide, but I get nervous that I'm going to be paying a lot out of pocket for the trial (it's a 7 year trial), and I'm just getting back to work. Anyone have success or a similar situation?

  • TNpotato
    TNpotato Member Posts: 57
    edited July 2016

    Ag23 - Have you talked to a rep at your insurance company yet? The BC I have out here actually assigned me a rep to help me get stuff pre-approved for things that might not normally be covered (like parts of my extended panel genetic tests) and my reps a great contact to 'get the ball rolling' if I have questions. If you haven't talked to them, it might be worth the time?

  • meadow
    meadow Member Posts: 998
    edited July 2016

    Jac and Scamp, hello! I missed your posts earlier, I wanted to say "welcome", and let you know, I hope you both find tons of encouragement and info here. Jac, I had chemo, surgery, rads too, this is the standard protocol for IBC. What is your diagnosis?

  • meadow
    meadow Member Posts: 998
    edited July 2016

    TNpotato, Ag, and all, for this time, I am actually suggesting to Google something for some info. A new drug trial is making news, one of the drugs is IMMU-132, there are two more associated with TNBC trials, but I am still looking for the link. Last I read, this drug is showing improvement in tumors that previously did not respond well to chemo.

  • Valstim52
    Valstim52 Member Posts: 833
    edited July 2016

    Welcome Jac and Scamp, I'm in the chemo, surgery and rads. 21 of 25 regular and 8 boosts.


  • meadow
    meadow Member Posts: 998
    edited July 2016

    That's my girl, Val! Hello !

  • allydp
    allydp Member Posts: 361
    edited July 2016

    I am so very said to hear the news about NotDoneYet. My deepest condolences to her friends and family.

  • hanley50
    hanley50 Member Posts: 78
    edited July 2016

    Hi ladies! Question -

    I had neoadjuvant DD AC-T from 02/10/16-05/20/16. Had UMX (not my choice - wanted BMX but my insurance company seems to know better than me and my docs) with tissue expander on 06/16/16.

    I did not have PCR - actually everything on pathology was about the same as what the imaging and biopsies showed in January (except that in addition to IDC they also found extensive DCIS that I didn't know about.)

    I am being told that due to TN without PCR that I need radiation - which I did not expect and was not planning on.

    What do you think? Other than TN without PCR I would not need radiation based on the normal criteria (Tumor <5cm (only 1.5cm), <4 possitive nodes (only 1 positive node), and I had clean margins.)

    If I would of had surgery prior to chemo I don't think I would be in this situation because how would they know if I acheived PCR?

    I have my simulation for RADS scheduled for next week (08/03/16) and keep second guessing this next step (I also am still getting fills and I do not have ROM under control - but am going to PT for this and was told I already showing Stage 1 Lymphedema.)

    Any words of wisdom would be greatly appreciated.

    Thank you!

    Maryann

    Editied to correct spelling!

  • LifeAloft
    LifeAloft Member Posts: 69
    edited July 2016

    Hi Maryann,

    I don't have any words of wisdom, but rads has always been in the works for me, since my TN diagnosis, but I also had one positive node. I'm not sure if that's why (the node), or the TN. I just had my lumpectomy so I'm waiting to get the rads ball rolling. I did not get a PCR either, I'm not sure what was left yet, but my surgeon said "very little", but I'm definitely off to rads next.

    Best wishes to you! Keep us posted.

    Kelly

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited July 2016

    I'm having my rad sim and rad onc consultation on 8/3 also. Rads have always been on the schedule, I assume because of the TN status. My question is, how long a period did most of you have between surgery and rads? I want to be healed pretty well before doing more damage to my skin. And I'm still recovering from a nasty taxane rash too.

  • kathseward
    kathseward Member Posts: 380
    edited July 2016

    great idea! I am in awe of the ladies on this site! as previously state I was diagnosed 3 weeks ago and I am still absolutely terrified. Have had a lumpectomy and chemo in a week but I cant get fear. I alternate between tears and this strange hyped up state and it is really doing my head in!

  • scotbird
    scotbird Member Posts: 592
    edited July 2016

    Hi I had LX and PCR and will start rads tomorrow which will be nearly 7 weeks post surgery. Am happy to do the rads as was told by oncologist that after rads my statistical chances of a recurrence will be lower (only a percent or two, but I'll take that). XX

  • lookingforward66
    lookingforward66 Member Posts: 148
    edited July 2016

    Hi to all,

    So I don't have to list you all that are concerned I'll just say this.

    I was diagnosed in Dec. 10, 2012. Double mastectomy. Visable in left breast, was starting up in right (just a few cells). Was positive in one node.

    Started AC. 2 infusions & had to stop because of chemo reaction. Almost died. Just decided quality of life over quantity. Since then, over 3 years, I have had no signs of Cancer. Just saw my BS & MO recently. Had PET scan end of May am NED. So don't go crazy. I did not have radiation either. It is doable. Don't stress out (if can) life is good. I go to Sylvester Cancer Center in Miami Florida. I also go to psychologist connected to Sylvester, to voice my concerns & help keep my head in positive thinking. I will be 4 years in December with only 2 AC treatments. This is just to let you know that life can go on without all the stuff they throw at us.

    I had good margins & only just started in one node.

    My PET scan after surgery was clear. So I don't look for cancer but if comes back I'll deal with it best as I can. Just thank Good Lord for every day. After all I could be killed in a car crash (especially on I-95) tomorrow. Nothing is written in stone. Just do the best I can each day given.

    Hoping this helps. Don't fret. It is survivable.

    Marsha

  • Cathytoo
    Cathytoo Member Posts: 394
    edited July 2016

    Marsha...thank you SO MUCH for your post. I might turn it into a poster to hang on my wall so Ican look at it every day‼️ I wish for you what I wish for myself and all our TN sisters...A LONG HEALTHY LIFE FILLED WITH LOVE AND HAPPINESS.

  • lookingforward66
    lookingforward66 Member Posts: 148
    edited July 2016

    Cathytoo

    Just wanted all of us to take this one day at a time. Life is not over as long as we do whatever we can every day to make it our best day. That is why I took the post name "looking forward". Power of positive thinking. It works.

    Marsha

  • LillieRose
    LillieRose Member Posts: 46
    edited July 2016

    Hi All,

    I don't come here much anymore. I'm trying to not think cancer 24/7 and sometimes the boards scare me :(

    But I promised myself that I would check in with good news and give the newbies hope 💛 I clung to the good stories I read while going through treatment. They gave me so much hope that I to could beat this...

    At 30 years old when my daughter was just 5 months old I got the news I have breast cancer. Of course I later found out it was TN. I was devastated... I thought for sure this was it.... But here I am. July 23rd was one year since my last chemo. I know I have a long road but I never thought I'd see another summer. Life is pretty much back to normal. I am enjoying watching my daughter grow and loving feeling almost myself again!

    I am currently training to walk 26.2 miles this September for the Jimmy Fund. All the money I raised will go to research for woman with Breast Cancer under the age of 40.

    I tried to read back and it looks like the same talks are still happening. I had 8 rounds of weekly Taxol chemo, 4 rounds of dose sense AC and then a BMX. Due to my PCR and no nodes I skipped rads. I was at Dana-Farber and I got a second opinion at MGH. I know we are all scared and I know how hard it was for me not to do rads but all the docs agreed it wasn't needed for my case. I think it's important to remember we are all different people with different tumors... Not one case is the same so we have to trust in the doctors and not compare ourselves to others.

    Good luck all 💛 Be well

  • blamoms
    blamoms Member Posts: 86
    edited July 2016

    I just started radiation today. I have 1 down 19 more to go. I admit when I found out it was triple negative I was scared. Everything you read about it is so negative. I am taking it one day at a time. AC chemo was rough but I got through it, Taxol was easier new side effects but I got through it. It's not easy at times but neither is life. I have learned to appreciate life more and try not to get stressed about the little things We are going to get through this ladies. Life is tough but so are we

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