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tyra
tyra Member Posts: 81
edited June 2014 in Second or Third Breast Cancer

hi i am stuck ....to make a long story short this is my second time having breast cancer ...the first time in 04 i was stage 2 then i got cancer again a brand new cancer  in 08 stage 3 with 9 node involve ..tripple neg both times....this on i had a mastomy and did 3 rounds of taxol then 3rounds of taxotere cause the taxol was really hard on me then i wanted more was trying to stop it for comimg back a 3rd time so i did 5 rounds of CMFduring this time i had a recurrance in my chest wall...so they stop the last treatment and started me doing rads .....the rads dr says that she can see the mass shrinking but i will have to have chemo again .....because the frist time the chemo fail me ....so what do that mean...since i am tripple negative what next ...do i have any hope she talking i can go in long term disabillity ...is she not being honest with me ......i did have a pet scan it show only activity in my breast ......i am so worry what do i do !!! there is not trail i can take !!! just wait to see !!!!!! how can you just wait and do nothing!!!!! PLEASE HELP SOMEBODY!!!

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  • Fidelia
    Fidelia Member Posts: 397
    edited October 2009

    Hi Tyra - is there any reason they cannot surgically remove the mass in your chest wall - rads take a long time to show a result - is there is chance of surgical removal and then follow up radiation?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2009

    Tyra ~  Not sure why you haven't gotten more responses to your post, but thought I'd share my reaction to your situation, mostly to bump the thread for you.  I guess what I'm wondering is, have you talked to your oncologist about what your rad doctor said?  I mean, it probably isn't up to your rad doctor to tell you you need to go back on chemo, so I would find out what your oncologist wants you to do.  Then, if you're not happy with that game plan, can you possibly get another opinion -- maybe with an oncologist or medical team that hasn't seen you before?  Perhaps a fresh approach or second opinion about your situation would be helpful?     Deanna

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  • mossybaby
    mossybaby Member Posts: 49
    edited October 2009

    Tyra - We seem to be in the same boat on the same journey here.  I had TAC chemo & a double mast.  I was scheduled for radiation but since the TAC chemo didn't work on me successfully, my onc wants me back on the chemo ASAP.  Now my dr has reccommended i take 3 different chemo drugs which I  think they label as the PEC combination. 

    I am going for a second opinion in Philly next week because I really need them to get the chemo right this time.  Everything I can seem to find says chemo is the right treatment for the triple negative kinds of cancer though.

    Please do get back to your onc and/or get another opinion as well.  There is nothing wrong with getting as many medical professionals as you need to help you beat this thing. 

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  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited October 2009

    Tyra- I know very little about your situation except to say I can surely see why you are upset (that's waaaay too small a word I know).  But that clean PET scan is a wonderful thing.  You can have cancer in your boob all day and night from now until the end of time and it wont kill you.

     Being on chemo so much HAS to have weakened you and messed with your mind.  Still, you have to take action.  There are new drugs being tested for triple negs, i read about "Parp inhibitors", there's some discussions about hormone therapies and zometa- have you checked out any clinical trials?  Here's one way to start checking them:

    http://clinicaltrials.gov/ 

    (after re-reading I think that you said there isnt a trial you can try, instead of trail) 

    Have you gotten a second and third opinion?  Push.  Go.  Every good oncologist will encourage you to get second and third opinions.

    Can you get to the big cities to the major cancer center?   

    I agree with previous poster, the RAD ONC doesn't make treatment decisions, that's for your ONC.  

    I did read that after chemo and RADs there's nothing more for Triple Negs to do. 

    What's happened stinks.  Major hugs babe.  

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  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited October 2009

    here, for Tyra and also for mossy baby, Susan Love's page on the PARP inhibitors and also a handy link to clinical trials for triple negs:

    http://www.dslrf.org/endingbc/content.asp?L2=1&L3=1&SID=381 

    Good for you mossybaby, schlepping into Philly- U of P I hope, I know they have a good cancer care center. 

    Here's some from that article:

    "...n addition, a study presented at the 2006 San Antonio Breast Cancer Symposium that looked at diet and risk of recurrence, found that women with ER-negative tumors appeared to benefit more from reducing fat in their diet than did women with other types of breast cancer. 


    In June 2009, researchers presented data the American Society for Clinical Oncology annual meeting about a phase II trial in women investigating a new class of drugs called PARP inhibitors. PARP, or poly (ADP-ribose) polymerase, is an enzyme that repairs damaged DNA. PARP inhibitors keep cancer cells from repairing their own DNA, which can make chemotherapy and radiation more effective. In this trial,chemotherapy was given with or without a PARP inhibitor (given via IV) in women with triple negative tumors who had metastatic disease. The study found that the women who received the PARP inhibitor had a 65% less likely to have a relapse and 60% less likely to die of their disease. Both findings were statistically significant. This study also found few side effects. 

    The investigators are now conducting a phase III trial in women with metastatic triple negative breast cancer. It is a multi-center randomized trial that will assess the effectiveness of the PARP inhibitor (callsed BSI-201) when combined with gemcitabine and carboplatin (GC). The trial will enroll 420 patients. A randomization process will assign half of the participants to a trial arm that will receive GC and the PARP inhibitor. The other half will receive GC alone. Importantly, the trial will have a crossover provision. This means that patients randomly assiged to receive GC alone will be able to get the PARP inhibitor if their disease progresses. You can learn more about this trial here. 

    Researchers are also pursuing other new treatments and drug combinations You can find a full list of the clinical trials open to women with triple negative breast cancer here. " 

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  • pitanga
    pitanga Member Posts: 596
    edited October 2009

    Tyra, I can hear the anguish in your post. I am so sorry sweetie, I wish I were there to help. It is a very scary place to be, a new tumor appearing during chemo. But it sounds like the radiation did the trick, if the mass doesnt show up anymore on the PET, and that is really good news. Chemo is a drag but since you halted it to start the rads, maybe the thing to do now is finish the cycle and see how you feel?

    About disability, I have not looked into it myself yet but there is a thread about it on the Stage 4 forum. It´s called "How many Stage 4 girls are getting SS disability" I tried to cut and paste the link but for some reason it didnt work.

    Sending you healing thoughts, best wishes and gentle hugs,

    Lisa 

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