I need 411 on triple neg please

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denisela
denisela Member Posts: 88
edited June 2014 in Triple-Negative Breast Cancer

Hi Ladies well I just found out for the last 3 yrs my onc. has been treating me as Her2positive and Im triple neg. I know everything about positive nothing about triple neg. Please help me Im going to start Ixempra this week. My PET shows my cancer is localized to the lung right now in the mediastinum and hilum area Onc.. gave me a 20% reponse rate. I came to MD Anderson to find this all out. Onc. says I dont have many options with triple neg is this true. Thank for the 411.

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  • Tamara1201
    Tamara1201 Member Posts: 70
    edited June 2009

    Hi Denisela,

    I'm afraid I'm new to the triple negative world myself, so I'm not much help, but I have been reading a lot of the previous blogs to get information.I've seen some women who were first diagnosed as hormone sensitive, then changed to triple negative, but don't remember seeing your situation as much. I'm sorry the doctor at MD Anderson wasn't more encouraging. I think they are working on new things for triple negative, but MD Anderson would be the place to know if there were any clinical trials you would be eligible for.

    I hope you can find the information you need, and things go well

    Tamara

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  • Indomitable1
    Indomitable1 Member Posts: 253
    edited June 2009

    Denisela- Check out tnbcfoundation.org. It's the Triple Negative Breast Cancer Foundation. They have info re: triple negative disease as well as discussion forums. It's another great resource.

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited June 2009

    I have not been on Ixempra, but I have read that it is a good drug for TNBC.  Unfortunately for those of us who are triple negative.... chemo is all we have, but there are many chemos to try.  When my mets was discovered, I was started on Taxol/Avastin.  It started out great with my first scan showing great improvement, but now 10 months in... it looks like my supraclavicular tumor is growing (I can feel it).  I also have mediastinal and hilar tumors as well as tumors in my spine.  I am having a PET scan done in the next few weeks, then will meet with my Onc to discus where we go from here.  She mentioned Xeloda so I think that will be my next chemo.  She said that 10 months on Taxol/Avastin was good, and hopefully the next drug will work even longer.  Having TNBC mets is scary, but I have read they are doing more research on it and hopefully they will come up with more treatment options for us.  Hang in there.  Linda

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  • denisela
    denisela Member Posts: 88
    edited June 2009

    OMG I just read the home page for this site about mets that were biopsied coming back hormone neg, I really need to see my Onc. Thank You all for the 411 it helped

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  • nanabolini
    nanabolini Member Posts: 61
    edited June 2009

    How could an oncologist; make such a huge mistake?  You must be furious.  This is relevant to me becuase I've had a really hard time finding out the HER2 of my diagnosis.  On both the biopsy and the surgery path reports it was "pending." Since I'm negative on the others I was especially anxious about the HER2.  It was the radiologist at consult who casually remarked I'm HER2 negative.Now I'm wondering 'why didn't someone tell me this before?' and 'maybe it isn't even right after anyway.'

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  • texasannie
    texasannie Member Posts: 3
    edited July 2009

    I was diagnosed with a stage 1 grade 3 triple negative tumor in July 2007.  I relapsed with mets to the  lungs and bones in March of 2009.  I've had a very good response to Gemzar and Carboplatin.  I can manage without oxgen, continue to work and I'm not in any significant pain.  The best part is I haven't even lost my hair. 

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  • helena67
    helena67 Member Posts: 357
    edited July 2009

    There has been a lot of news lately about PARP inhibitors possibly having a good effect on tripple negative. You may want to discuss that too with your oncologist.

    Best,

    Helena.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    denisela,

    What chemo's have you been given already?  I did Ixempra for six months with Xeloda (this combo does show to work better)  this clear up my tumor for three months but when this drug stop working the cancer/tumors came back extremely aggressive.  I have four other friend who were TN and had this same thing happened. Also many had eye sight problems that have not went away after treatment.  I would ask about the research for TN that has came out in the last three years by patients not trials.  Also make sure they give it weekly low dose because it has been proven this is just as effective as once every three weeks.  The fatigue with this chemo can be very hard on you.

    Do you know if you are brac+?  The only trials open (and there are very few) are for TN who are brac+ and had a limited number of chemos.

    I'm with texasannie that carbo, gemzar and avastin is a good chemo combo and very doable.

    Flalady

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