Calling all TNs

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited March 2016

    Well, Cathytoo, doesn't that just suck

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited March 2016

    Cathy, I tested negative for brca, too. I will ask my onc when I see her next month.

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2016

    Curly mint choco chip is my fav too!

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited March 2016

    I'm BRCA negative too! Isn't that just F-ing perfect?!! Jeez, cancer sucks!!!!

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  • greenae
    greenae Member Posts: 540
    edited March 2016

    I am also BRCA NEGATIVE, and have read too many articles. I am trying Really hard to stop reading. The study I think you may be talking about was in 2010, and cited better survival for TNBC, BRCA +. It consisted of only 77 women.

    A 2013 study of 3000 had a different conclusion. I think I will stick with this study. I am working really hard to stay off the internet, and be positive. I think of all of us every day, read BCO every day, and try to LIVE everyday.

    Hugs to all of you!

    Arleneimage

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  • Mamiya
    Mamiya Member Posts: 432
    edited March 2016

    I am also BRCA negative. That study that showed a slightly less favorable outcome for BRCA negative was too small to really be able to make a general conclusion. There are so many other things that could have been factors, they can't know from that small a cohort what a real population-wide statistic would be. I am not going to fret about that. What IS positive about being BCRA negative is the not passing that particular mutation on to your children part. Also, remember, you are not a statistic. In 10 years you will not be 80.9% alive, you'll either be alive or you won't.


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  • Allydp
    Allydp Member Posts: 520
    edited March 2016

    Jen - Yes! Now or never and I think you're making the right choice!!! You got this and I think it will be so good for you and all will be well! Sending you good thoughts and prayers that your house sells quickly and it's a smooth transition for you!

    Meadow - we love The Voice too! Team Blake!!

    Jan - so sorry you're dealing with so much at once right now. Hope you start to feel better soon!

    Cocker - hugs to you. I also have our cats' ashes and it was an extremely hard moment bringing them home.


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  • ALHusband
    ALHusband Member Posts: 344
    edited March 2016

    I'm here Cocker. Just doing more stalking than talking lately. We are getting ready to head to Florida on vacation for 10 days. Can't wait. I have an Aunt down there who is 92 (and a 10 year BC survivor!) so I'm anxious to visit her while we're there. We also intend to hit Disney World since Kath has never been there. We're staying in a condo right on the beach so it should be nice.


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  • TampaWhit
    TampaWhit Member Posts: 9
    edited March 2016

    This is my first post on any of these forums...

    Diagnosed in January 2016 with right IDC, Stage IIA, 2.9cm,triple negative. I'm 25 years old and BRCA1+ it was found out just a couple weeks ago. I started neoadjuvant chemotherapy three weeks ago.

    I'm on a trial that has me doing weekly Taxol for 12 weeks with Carboplatin (or placebo) every three weeks and daily Veliparib (or placebo) twice daily by pill. This will be followed by 4 treatments of AC administered every 2 weeks. A double mastectomy will follow with tissue expanders that will be exchanged for implants 3-4 months after.

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  • jenjenl
    jenjenl Member Posts: 948
    edited March 2016

    Im with Mamiya 100%. You'll drive yourself nuts with statistics.

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2016

    TampaWhit, welcome! But actually I would rather that you never had to join...I am so sorry for your diagnosis. And you are so young too, just not right. But, I know you will find tons of support and information here. Have you had time to explore the website? There will be a group and thread of people starting chemo the same month, did you start in March? I recommend finding and joining the chemo group for the month you started...there is a lot of comfort going thru that at the same time with others. I am assuming you are from Tampa, Florida? What a beautiful part of the USA! Kinda jealous of those who can see the ocean without an 11 hour roadtrip! Please let us know how we can help you get through this...and you will get through it. You can regain your good health, you have to fight but you can do it! Hugs to you

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited March 2016

    TampaWhit - ditto what Meadow said.

    Feel free to ask questions here, rant, cry, do whatever you need to do. We have all been there! Welcome to the club you never wished to join.

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  • bluedog
    bluedog Member Posts: 212
    edited March 2016

    TampaWhit, you are insanely young to be going through this. That just SUCKS! Your trial sounds great -- so glad you're in it. Don't believe any of the doom and gloom you hear about TNBC. There are lots of women on this thread who were diagnosed TNBC 5, 10 years ago, and they're still going strong. Stick with us, kid -- we're here for you.

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  • BanR
    BanR Member Posts: 289
    edited March 2016

    cathytoo ..

    brca positive seems to have better outcomes because they have more customised treatments targetting that particular condition of the genetic profile. while the non brca patients get the usual treatment like everyone else.

    cocker..

    i have been around but havenot had the chance to type much. Thanks for thinking about me!!

    I had my follow up a few days ago. Asked about metformin once again since we recently had another set of discussion happening here on that. My onco again clarified...for a person who is non diabetic and generally taking metformin..the risk is more that benefit. The fact that it certainly prevents recurrence is not yet established. Infact unnecessarily taking this medication has a chance of kidney failure in the future.

    spring is setting in..enjoying my outdoor walks. The sun and the birds chirping around have always been my biggest attraction. winter was mild this year and as the snow melted we found the grass still green underneath!!

    happy to hear from sylvie and titan both completeled 10 and a half and 7 yrs respectively!

    good health and happiness everyone!!




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  • Angtee15
    Angtee15 Member Posts: 209
    edited March 2016

    In the chair about to get my first AC infusion. Bring on the Red Devil! I tolerated Taxol/Carboplatin fine but am a wee nervous about this one.

    BanR-I just asked my MO about Metformin and she said essentially the same thing as yours. I will not be getting that from her it seems.

    TampaWhit-I'm so sorry about your diagnosis... And sheesh so young! You will find comfort and good information here. Welcome.

    Hugs and high fives to you all. I hope you are all able to do something fun this weekend.


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  • SA8PG
    SA8PG Member Posts: 371
    edited March 2016

    Hi everyone,

    I wasn't sure if you had heard that our beloved Kath/Tobycc passed away Wednesday evening. :(

    Our sincere condolences go out to her husband and two sons. She was such a beacon of light and kindness. She radiated the love of God and reached out to so many to help encourage them when she herself was hurting, including me. Rest in peace sweet Kath. You will be missed.

    God bless


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  • Allydp
    Allydp Member Posts: 520
    edited March 2016

    Oh no, I'm so very sad and sorry to hear of sweet Kath's passing. My heart breaks for her family and friends. Sending them many prayers and condolences.

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2016

    SA8, I just saw this. SO very sorry of her passing. Thank you for honoring her here

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  • SA8PG
    SA8PG Member Posts: 371
    edited March 2016

    Thank you Ally & Meadow. If anyone wants to read her obituary it's over on the middle age to older Christian woman's thread. She was a beautiful soul dedicated to the service of others.

    Hugs



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  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    I'm sorry to be down right now....everyone has said to feel free to rant or vent here. So, here goes. Ever since hearing of Kath's passing which happened at the time of my 3rd infusion, depression has been a constant part of my days and nights. I've been Googling constantly, filling my head with negative thoughts. I've tried so hard to be positive since my TN diagnosis. And, I've done a pretty good job. But, when do the negative thoughts leave your mind? I feel that my life has only two more years ahead EVEN THOUGH I know that's not necessarily true. Hate this horrible disease‼️ I don't want to be thinking only of myself. I send along prayers to Kath's family and to all women who have had to deal with BC


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  • bluedog
    bluedog Member Posts: 212
    edited March 2016

    Cathytoo, don't apologize for being down! It's completely understandable, and we've all been there. To try to get out from under the bad feelings, I suggest distraction (for me, reading), taking a walk (or more vigorous exercise, if that's part of your life), and, well, I have to say it, ice cream. If the feelings persist more than a few days, go see a therapist and/or get some meds. No need to feel wretched. Hope you feel better soon!!

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited March 2016

    Damn I hate to hear about Kath's passing! Prayers for her family. RIP Kath.

    Cathytoo, I've been down in the dumps too this weekend, and still have thoughts like I'm doomed and I'm three years out. I don't know that that'll ever go away, especially when we hear of one of our own passing away. Cancer sucks!All we can do is hope and pray for the best. Ice cream and chocolate are my friends. I also do a lot with my dog's when I'm feeling down, walk and read. Lots of deep breaths and just hang in there. (((((HUGS)))))

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    bluedog & Luvmydobies...thanks for your kind words. This past year has been hard. Lost my husband suddenly and got BC six months later. It's easy to scare yourself to death. I need to stop reading...everyone has their own story. And, none of us (BC or not) knows what lies around the corner. My husband died at a restaurant eating dinner. Perfectly healthy. I have a therapist appointment tomorrow. Right now, I'm taking the suggestion to have some ice cream and hug my doggie. Thanks, again.image

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  • Secondchance15
    Secondchance15 Member Posts: 20
    edited March 2016

    I haven't posted in a while but I am here today asking for support from all of you as tomorrow is a big day for me and my family...

    First, I'd like to say that I'm so sorry to hear of Kaths passing. It breaks my heart every time another life is lost due to this horrible disease.

    Second...Cathytoo, absolutely we've all been there. I learned of a friend's passing from TNBC while I was in treatment and I went through periods of fears and negative thoughts. I also felt guilty because although I was very sad for her and her family, I was fearing for myself. I am blessed to have the love and support of close family and friends, as well as the absolutely amazing people on this site who helped me see that everyone is different and one person's situation, even if similar to yours, does not define you. It did get better for me with time; I sought help from my oncologist as well as complimentary treatments (acupuncture and self-hypnosis) which have been a tremendous help. I have learned to see the positives in things despite all of the curveballs that were thrown at me, including going into radiation with positive nodes that were not removed by surgery.

    Which brings me to why I came here today: Tomorrow is a BIG day for me and my family. After over a year of treatment with chemo (twice), surgery, radiation, and what seems like hundreds of doctor's visits (and 3 oncologists!), I have my post radiation PET scan tomorrow. I feel better than I've felt in a long time, and am very hopeful and optimistic, but fully aware of the seriousness of the situation. Please send good thoughts and prayers our way! Love to you all

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  • ScotBird
    ScotBird Member Posts: 650
    edited March 2016

    Second chance I hope it goes well tomorrow. I have got everything crossed for you and am sending love back to you too. X

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  • jenjenl
    jenjenl Member Posts: 948
    edited March 2016

    How great Second Chance?!?! It's going to be clear and you are going to be doing a very happy dance. Big hugs for tomorrow.

    We listed our house yesterday (OMG I worked so hard!) and in 24 hours we have 2 solid offers. How exciting!

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    Secondchance...sending you something for tomorrow...image

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  • Allydp
    Allydp Member Posts: 520
    edited March 2016

    Cathy - I am so so very sorry to hear of your husband's sudden passing. My heart truly goes out to you. You've been given too much to bear this last year. It's okay to be scared and vent here. We're all here for you. Always. What an amazing companion you have there with you though...and I mean both your adorable dog...and the ice cream ;)

    Secondchance - sending you many, many prayers for a perfect scan tomorrow. I hope you get results quickly. We're all in your pocket.

    Jen - holy cow! 2?! That's amazing!!! So thrilled for you!

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited March 2016

    Carhytoo, your lil dog is freaking adorable!! I could steal that one from you. Haha! My dobermans loved our little terrier and were so protective of her. I miss our little one so much! She was a better size for the lap. The Dobies get a bit heavy but they love to be touching us at all times if possible.

    Second Chance, I'll say prayers that your scan will be fine. I'm sure it will. Let us know how it goes! We will all be there in your pocket.

    Happy for you Jen!

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited March 2016

    Lovemydobies...my little one is in love with big dogs. I'll pack him up and send him to you‼️ He has a very stable personality and absolutely loves every living being...My cousin has an English Lab and they're best buddies. I'll tell him you sent him a big complement.

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