Triple Negative recurrence after double mastectomy

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gginna
gginna Member Posts: 15
edited June 2014 in Triple-Negative Breast Cancer

I was diagnosed with Triple Negative Breast cancer in Nov. 2009. My tumor was 6.5cm stage 3 did chemo adriamycin, cytoxan, and taxol. In 8 rounds there was nothing left of my tumor. Had a Lumpectomy in June of 2010 with node removal. Followed by radiation. Then in Ocober of 2011 had a double mastectomy with reconstruction. Everything ran smoothly all my treatments all the surgerys until April 2012 when I went to finish my reconstruction and have my nipples put on it was like over night a lump came up right in my arm pit. I didn't even have surgery that day just a biopsy and 2 days later found out it was back. I have been going through chemo since April and I was told today that it has grown from 2 to 4 cm the Abraxane is not working. I just saw a nurse practioner today I will see my oncologist and surgeon next Tuesday after a cat scan and a bone scan. Does anybody no what options I may have now that chemo is not working? Also I'm BRCA1 positive too. I just turned 43 and wonder whats going to happen now?

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  • christina1961
    christina1961 Member Posts: 736
    edited August 2012

    I'm so sorry this has happened to you.  I can't advise you of any particular treatment, but I do know there are other chemos that they use with triple negative such as cisplatin, gemcitabine because I met a woman who had a recurrence in her neck and they had her on gemcitabine and either cisplatin or carboplatin combo.  It was working for her. I'm sure there are other drugs out there as well and even clinical trials with new drugs.   There is lots of good information on the tnbcfoundation.org website also and there is a recurrence thread on that website.  The website is a little harder to navigate for me, but the people on there are just as friendly as the ones here and if you introduce yourself there you will likely get a response as I know there are several women on there who are currently in treatment for recurrences of TNBC. 

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  • FernMF
    FernMF Member Posts: 349
    edited October 2012

    I am 2 weeks post LAST chemotherapy round - I need your information - HOW LONG DID IT TAKE FOR YOU TO HAVE ENOUGH HAIR TO NOT WEAR A WIG?  "All I want for Christmas is a full head of hair."

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  • Luah
    Luah Member Posts: 1,541
    edited October 2012

    2 months for me, although it had started growing back earlier on the taxol. It was very, very short the first time I went topless, but I was with my mom and sister and felt so good. Best part, was feeling the wind again. 

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited October 2012

    Hi Fern MF - I think by about 3 months out you will have enough hair growth to go without a wig.  I'm at 6 months now, and I have a full head of hair, and it's past my ears down tmy neck a few inches, but curls up a little, as it is not long enough to go anywhere yet.  I could go without my wig, but my hair came in salt/pepper so I need to color it.  I have to still research which hair dye products are the safest on the safe cosmetics website. 

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited October 2012

    EXCELLENT ARTICLE RE: TNBC - LIFESTYLE PRINCIPLES FOR RISK REDUCTION

    http://nosurrenderbreastcancerhelp.org/page93/page100/page100.html

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  • netty46
    netty46 Member Posts: 296
    edited March 2013

    Gina sorry to hear. I see you did not get to far with your posting and questions . It turned into a hair thing. Lordy! Call md Anderson or duke in north Carolina. God bless you.

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  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    Gina, I hope someone comes along soon to give you some help. I know there are lots of different chemos out there and hope you find the one to kick the cancer into touch.

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  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    Oh,I see this is an old thread. Gina has not posted since the original post in August last year. I hope she's ok and glad it is a long gap to when the thread was high jacked by a hair question.

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  • slowloris
    slowloris Member Posts: 128
    edited June 2013

    Gginna, hope you're doing well. It's been a while since this was posted. I was just recently dx with recurrance of tnbc on same breast as original after bmx, chemo, and rads. So far they're saying a local recurrrance, but i haven't seen the PET report in writing yet to know if the lymph nodes are clear. (was lymph involvement with original), Has anyone else out there with bmx and te surgery experienced this? Did they do surgery after 2nd round of chemo, take out te's and cut away skin? I'm not sure if it's just in my dermis and epidermis, or on the chest muscles since te's are put in under the muscles. I will ask at next mo appt. 

    I've just finished my 1st week of Xeloda monotherapy. Does anyone know how  long it takes before you know if the meds are working? with AC/T, it seemed as if my tumor shrunk daily. Hope I get the same response, but would reall like it all taken off. I really don't care if I have breast or not, just want to live.

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  • gginna
    gginna Member Posts: 15
    edited July 2013

     Just wanted to let you guys know I am doing better when the Abraxane didn't work my surgeon and oncologist both decided that a lumpectomy would be the best option so not only did they remove one tumor there was another tumor behind the first one that was not seen on any scans I guess because the 1st tumor was blocking it from being seen. I had brachytheropy hope I spelled that half way right done this time also. This all went smoothly next pet scan came back nothing lit up in the area of the tumors but I had a lymph node which had been enlarged all this time my supervascular node its right above your collarbone in a spot where they do not like doing surgery for all the nerves that are in this area. So I ended up having radiation done to just this one spot they hit it from 5 or 6 different angles for 3 1/2 weeks 2 times a day and thank the good Lord it killed any cancer there. Also to Slowloris I have been on Xeloda for almost a year now. The oncologist seems to think it is keeping it from spreading I guess it is working cause the lymph node that had cancer in it was there for a year almost and it didn't spread anywhere else. I don't know I take it cause I don't want to take any chances and not take it. Even though it is hard for me to remember when to take it when I don't have to take it. Anyway so  far so good. 

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