Calling all TNs

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  • Brneyegrl6608
    Brneyegrl6608 Member Posts: 85
    edited May 2017

    Warrior I'm from Indiana and considered that trial but decided to go with A.C. x 4 and then Taxol x 12 with Carboplatin every three weeks x 4. If that doesn't work I'm definitely looking into that study. The closest one to me is in Indy at the Simon cancer center.

  • Warrior2016
    Warrior2016 Member Posts: 59
    edited May 2017

    Brneyegrl6608, I already did 5 months of chemo with 4 drugs - kind of need some new options. I'm just hoping that whatever I get this time is easier. I was nauseous 24/7 and got so run down last time.

  • Brneyegrl6608
    Brneyegrl6608 Member Posts: 85
    edited May 2017

    Warrior - here's to hoping that they find a genetic match for you and this time it works!

  • Warrior2016
    Warrior2016 Member Posts: 59
    edited May 2017

    Brneyegrl6608 - Thanks for the well wishes. This round of chemo is prophylactic. I just had a double mastectomy and am really cancer free at the moment. It's just that they think my chance of recurrence is very high.

    Good luck on your upcoming chemo. I was very nauseous but not everyone is so I certainly hope you are fine through out yours!

  • Whirlaway
    Whirlaway Member Posts: 64
    edited May 2017

    Warrior, thanks for explaining about your trial! At least your tumor load is out now so here is to hoping all is calm for a long time - and they find the right chemo for you! Fingers crossed for you and everyone else here!!

  • ALHusband
    ALHusband Member Posts: 344
    edited May 2017

    Anyone heard anything new about the Metformin trial? It's been going on for a while now. I wonder if there's any preliminary findings?

  • Brneyegrl6608
    Brneyegrl6608 Member Posts: 85
    edited May 2017

    The findings for the metformin trial has been delayed to 2020 I believe.

  • ALHusband
    ALHusband Member Posts: 344
    edited May 2017

    Thank you Brneyegrl66 !!!!

  • 5thSib
    5thSib Member Posts: 141
    edited May 2017

    I have not posted in a couple of years. I was hoping that in about 4 months I was going to sign in and post that I had reached my 5th anniversary after surgery. But today I had a biopsy on a lump in almost the same place as my first one (verified as suspicious by an US) . I asked the surgeon what his gut feeling was and he said he thought it would come back positive. So, will be waiting until sometime next week to get the results. He said that even if it comes back negative he wants to remove it and have it tested. Radiologist had stated that it could possibly be scar tissue. Had a mammogram in October which came back as normal (but with disclaimer about my dense breasts which might hide some tumors).  The one they did on Tuesday came back with no significant change from October, but the US did show a 2.4 cm area of concern.

  • jenjenl
    jenjenl Member Posts: 948
    edited May 2017

    oh Shirley, I so hope it's scar tissue. Please know we are here for you and praying while you wait. xo

  • Cathytoo
    Cathytoo Member Posts: 667
    edited May 2017

    Shirley...I ditto jenjen's hopes that it's scar tissue and that you reach your five year milestone. Sending prayers your way. ❤️

  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited May 2017

    Shirley, - I hope the dr was just being overly cautious and soon gives you B9 results!

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited May 2017

    Warrior, did you have any positive nodes?

    Shirley, hope it's nothing. Keep us posted.

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited May 2017

    Shirley please keep us posted. Here is hoping for scar tissue.

  • ALHusband
    ALHusband Member Posts: 344
    edited May 2017

    Prayers going up for scar tissue.

  • Warrior2016
    Warrior2016 Member Posts: 59
    edited May 2017

    Lovemyvizsl...no, none of my nodes were positive. My surgeon and oncologist couldn't believe it. They told me they feel that the cancer "may be out there" in my system anyway as they can't detect microscopic errant cells. They did tell me the technology for microscopic detection is coming soon. Anyway, clear nodes is the positive I am hanging onto!

    Shirley - I'm sending prayers and all the positive energy I can!

  • Cathytoo
    Cathytoo Member Posts: 667
    edited May 2017

    JUST CURIOUS...ACT vs TCx6 Anyone out there who DID NOT have ACT?

  • MichCali
    MichCali Member Posts: 45
    edited May 2017

    Shirley-- sending positive thoughts and prayers.

    Warrior 2016--- glad to hear that nodes are clear.

    Cathytoo---I only had TC-- 4 rounds.


  • Batesburg
    Batesburg Member Posts: 199
    edited May 2017

    Cathytoo- I had four chemotherapy drugs! ACT and carboplatin! Shirley- you must be experiencing so many feelings about all of this. They always say worry doesn't change the outcome but how can you not? I put my money on it just being scar tissue. I will say prayers each morning and night for you.

  • Connie1230
    Connie1230 Member Posts: 192
    edited May 2017

    I am also a member of this club no one ever wants to join. I had a lumpectomy, AC 4 times and then 12 taxol and carboplatin chemos. Now I have completed 20 of 31 radiation treatments. I have read this thread occasionally since this fun journey began last July but I was reading a lot that scared me 1/2 to death and decided I was better off not even reading. But yesterday Mayo sent me a new schedule which includes a lot of testing in July and my heart sank. I have been concentrating on just getting through today since last July and haven't even tried to look ahead. Now that's I am getting close to the end of treatment, I have no choice.

    My oncologist mentioned a new trial that is still going through the final approval process and hasn't started yet. She said she'd go into more detail when she saw me in July as all approvals should be complete by then. I believe it consists of a shot and then low dose chemo pills. Has anyone heard anything more about this? I'm wondering about those chemo pills (and there's always the chance that I'll be in the placebo group) and my hair. I really want my hair to come back but not as much as I want to live, I suppose.

    I also read something here about Xeloda. When I googled it, it looks like this is for metastatic breast cancer only. Is that correct and is anyone on this? When I saw the side effects, my heart sank. I've had enough of those SE with treatment so far. No one at Mayo has ever mentioned this drug to me. Is it something I need to be asking about?

    Thanks everyone.....I guess it's time to take my head out of the sand I've buried it in

  • SuprSurvivr
    SuprSurvivr Member Posts: 139
    edited May 2017

    Hi, Connie1230! I'm a TN who did not get a complete response to neoadjuvant chemo, and I'm taking the Xeloda now after radiation. There is a separate chat session for TNs taking Xeloda - look there for more info. After Xeloda, I'm going to do a clinical trial involving folate protein receptors that is a monthly shot that may or may not come with some cytoxan (low dose) depending on the group placed in. Feel free to message me directly if you have any questions. My first 14/7 cycle of Xeloda was not bad, very doable. Getting ready to start round two today! It's usefulness for TN without a PCR was assessed in a Japanese clinical trial, which showed very good results. However, its effectiveness is still being tested in US.

  • duckee
    duckee Member Posts: 10
    edited May 2017

    I had TC x 4; my onc intially said DD AC then Taxol x 12 weeks but then presented my case to 6 other oncologists and four out of the six said they would recommend TC x 4 so I went with that.

  • Cathytoo
    Cathytoo Member Posts: 667
    edited May 2017

    How to you determine your cancerversary? From the day of diagnosis or your surgery

  • jenjenl
    jenjenl Member Posts: 948
    edited May 2017

    I always use my date of dx bc that's when I started fighting. Use whatever makes most sense to you 😁

  • Batesburg
    Batesburg Member Posts: 199
    edited May 2017

    I use my diagnosis date as well. I have heard from the johns hopkins website (ask an expert) that if TNBC was to recur, most likely to recur within 2 years of diagnosis. Anyone else hear this before??

  • Connie1230
    Connie1230 Member Posts: 192
    edited May 2017

    I have read 3 yrs and 5 years. I have never heard 2 yrs.

  • greenae
    greenae Member Posts: 540
    edited May 2017

    Hopkins says 2 years, start celebrating, med journal articles say 2.6 years is time of max risk of recurrence. Risk drops A Lot at 3 years, and falls below that of estrogen + at 5 years, as per my NYU oncologist. I am praying Hopkins is right

  • Connie1230
    Connie1230 Member Posts: 192
    edited May 2017

    greenae, I'm sure we all want to believe that. I know my dr. told me that at 5 yrs., you have no more chance of getting a reoccurrence of TN than someone who has never had BC at all. I'm curious if there are ladies on here who have had a reoccurrence and how long did it happen after the first diagnosis

  • ALHusband
    ALHusband Member Posts: 344
    edited May 2017

    Cathytoo my wife did not have ACT. She couldn't because she had had her lifetime limit of Adriamycin 17 years prior in a battle with Lymphoma. Instead she had Cisplatin and Taxol.

  • ALHusband
    ALHusband Member Posts: 344
    edited May 2017

    I'd kinda like to know how they distinguish a recurrence from a "new primary".

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