tumor got bigger after 1st chemo

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fightformykids
fightformykids Member Posts: 4

Hello, all! I am so glad I found this disc board. I don't feel so alone.  I was diagnosed Jan 2011 with stage IIIC tnbc. IT is also in my nodes under my arm and breast muscle. since I discovered it in Jan, it grew from 2 cm to 6 cm two months later! I feel like i lost precious time because my gyn sent me to a crappy hospital. I since left them and am at a breast cancer center in pembroke pines, fl. Started AC chemo 2 weeks ago. Am on a regimen of 4 months with 2 months ac and 2 months t. Then recommendation is bi-lateral, even though no evidence in other breast and then radiation. I am fine with that.

My question is this: after the first chemo there are signs that the tumor has some "deadness" in it but it still grew a cm or so. Is that normal? Can anyone comment on this or my treatment? It seems that this is the ONLY treatment available for me. I feel that If it doesn't work I am doomed. 

I have 3 children and am really frightened.

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    Fight - My doctor followed MD Anderson's protocol... for the most part anyway, and you might want to look into it. I had Taxol every week x 12 weeks followed by AC every other week (dose dense) x 4 treatments. My tumor didn't change initially - or at least I didn't think so. But by about the 8th Taxol treatment it was half the size, then after the first AC it was much, much smaller. MD Anderson's algorithm for stage 3 is Taxol x 12 every week, followed by FAC x 4 (but if you go into the footnotes, they also include FEC, AC, EC, CMF... ). The taxanes (Taxol or Taxotere) disrupt tumor cell division and is particularly good for aggressive cancers (which TN usually is). Are you getting AC every two weeks or three? In studies I had read - the information I found was that doing dose dense AC was better at treating aggressive cancers if you can tolerate the treatments - so when my doctor asked me how often I wanted my AC - I told him every two!

    One good thing about doing your chemo up front is that they can see how your tumor is responding. Hopefully the second round will show some improvement.  Thoughts and prayers are with you. Hang in there.

  • waswarned
    waswarned Member Posts: 2
    edited March 2011

    Dear fight for my kids,

    Sharing my experience, not giving advice. I am triple neg, stage IIIa. Three infusions of

    the AV, red stuff. Tumor has gone from 6ish cm to almost not at all. I say, run, not walk,

    for another opinion. And I know you are exhausted dear.  It is not the only treatment. My local

    Doctor is awful, so I travel for the real stuff, get infusions locally.

    Demand to know, fight like a mom, all the details of your protocol. Bring a tape recorder.

    If you don't have insurance, good. Get a lawyer. Get SSI, medicaid. 

    Bad doctors will push you around, good doctors will respect your desire to 

    get a second opinion.

    sending you love and light

    taugusta

  • waswarned
    waswarned Member Posts: 2
    edited March 2011

    What is Taxol like? Am having my last red stuff infusion Friday. Very scared about

    Taxol. Any info would be helpful. 

     Thanks,

    taugusta

  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    taugusta - For me, Taxol was not so bad. I had it first, so had nothing else to compare it to, but I do think it was easier than AC. I also think because I had it weekly (I know some docs give bigger doses farther apart), it eased some of the side effects. Of course there are the usual: fatigue, hair loss (although you probably already have that), some nausea (although not bad), and some joint pain. I never did get any of the numbness or tingling in my fingers/toes like some people do. I credit that to the weekly doses and - in my opinion - making sure I drank plenty of water and got out for a walk nearly every day. You can do it. Tick them off on the calendar and you will be done before you know it.

  • Titan
    Titan Member Posts: 2,956
    edited March 2011

    No advice for you fight 4 your kids..but good luck with your chemo regimen...!  Hang in there..and let us know what is going on...you have alot of women there with you..count on it!

  • Lifestooshort
    Lifestooshort Member Posts: 159
    edited March 2011

    When I started my journey, I was to do your regimen.  After 2 cycles of A/C, my tumor had grown as well, confirmed by an MRI.  I had a mastectomy, then more chemo to mop up.  I would think your onc would confirm the growth and change chemos immediately.  There are many chemos available.  The platin chemos seem to work better on Triple Negatives.

    There's also a Triple Negative Breast Cancer Foundation board too....check it out!

    Good luck to you.  PM me if you need more info

    Laurie/Lifestooshort 

  • LMT
    LMT Member Posts: 8
    edited March 2011

    I have just been diagnosed with IDC triple negative breast cancer--3 cm.  I am going to have chemo first, then surgery.  I am very concerned about chemo side effects because my daughter is getting married in May, right in the middle of my chemo treatments.  I have been told by the oncologist that I will be getting Taxotere, Cytoxan, and Adriamycin, all at once, I guess every two or three weeks. (I meet with her for the first time on Monday.)  Are the side effects awful?  I am very stressed and worried!

  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    LMT - I had a variation of the chemo you are having with Taxol alone first, then AC after that. For me, the side effects were okay.. and the usual: hair loss, fatigue, nausea (although I only vomited twice the entire six months of chemo), and some minor issues with finger and toe nails. Oh, and hot flashes from the menopause chemo put me into. Interesting that your daughter is getting married right in the middle of everything - my high school reunion was right in the middle of mine. I went anyway and found the most beautiful pink scarf (not because it was BC, but because I love the color pink ;) Anyway, it was okay. Some people find beautiful wigs and look fabulous. I could never make the wig thing work without feeling like everyone knew... But that is just me. You will be in your treatment far enough then, that you will know how you feel after treatment. For me, I was exhausted the day of treatment, and a day or two after. Other people feel okay the day after treatment, but feel crummy a couple days later. You will figure it out. When you do, maybe you can work your chemo schedule a little bit for that time period so that you are feeling okay for your daughter's wedding. Hang in there and lots of hugs.

  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2011

    Nordy is right.......by the time your daughter's wedding is here you will know which days are your bad days.  For me I was fine the day of chemo and the day after, days 2 - 4 were the worst.  I only got sick once and that was after my first chemo (AC), they changed the meds and I didn't get sick after that.  I didn't have any stomach problems on Taxol.  Like Nordy, I didn't wear wigs, but did have nice scarves for going out. 

    Good luck and (((hugs)))

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