Clinical Trial?! Need help deciding treatment

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LillieRose
LillieRose Member Posts: 112
edited October 2015 in Triple-Negative Breast Cancer

Hi all,

As I posted before I am recently dianosed.... Healthy 30 year old mom with TN IDC...

I am currently at Dana Farber in Boston and I went in today to discus my options. They said chemo, surgery, radiation. They also said that I have an extra option due to my age and the TN. It's a clinical trial using different chemo instead of the standard AC + T. I will either get Cisplatin once every 3 weeks for 12 weeks OR Paclitaxel once a week for 12 weeks....this would be INSTEAD of AC + T. I would only get the standard treatment if for some reason this chemo didn't work....

She said it gives me more options chemo wise because if this doesn't work I can always try the standard mix but they can't try the Cisplatin on people not in the trial... I guess they have had great results with Cisplatin...

I'm scared to do the trial or to not... What if it doesn't work and my cancer spreads? What if I don't do it and the standard treatment doesn't work? Help! I know nothing about this disease... I need advise please!

Thank you so much!

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Comments

  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    I believe that there is a way of them testing your cancer to see what works best on it, please ask your onc about that. 

    Also, is this a phase I clinical trial that they are offering you? If it is phase II or III, I would ask for the results of the other phases.  In addition, Dana Farber is well known but I am wondering if there is somewhere else you can go for a second opinion. 

    Personally, I would be very reluctant about doing a clinical trial unless then can truly reassure me that this is the best for me. 

    I hope that maybe someone with knowledge of this treatment and it's efficacy will respond.

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  • crs003
    crs003 Member Posts: 73
    edited May 2015

    I am doing weekly Taxol for 12 wks followed by dose dense AC for 12 wks, I was told this is the standard of care treatment for the neo-adjuvant. Cisplatin is a Platinum, you can find some promising studies on Platinum (I am more familiar with the Carboplatin studies, so I cannot say if the same is true of Cisplatin), but there are only a few studies right now. I wanted to add Carboplatin (another Platinum) to my Taxol, but my MO will not use it in the neo-adjuvant, assumingly because of the side effects and risks. I would start looking at studies, I just googled it and found a few.  AC and Taxol are considered the gold standard since we know so much about them and how well they work. In studies weekly Taxol was found to be more effective than every 3 weeks, with less toxicity. Would you still be receiving AC after the trial? I don't know if I could go with not receiving Taxol since it is such a proven drug. But with any study, you are free to withdrawl at anytime and are closely monitored, so it may be worth if for you.

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  • inks
    inks Member Posts: 746
    edited May 2015

    Have you had the BRCA testing? Taxanes (paclitaxel is taxol) are not effective for BRCA. Platinum drugs and Adriamycin (anthracycline) are more effective for BRCA. I would be worried if you ended up in the taxol only arm and you were BRCA positive. Will you know witch arm of the trial you will be in?

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  • LillieRose
    LillieRose Member Posts: 112
    edited May 2015

    I get all the chemo options just added Cisplaitin. So I am doing 12 weekly taxol, surgery, AC chemo and then if I want I can do the Cisplatin.... I'm not sure what I will do but I am getting the standard regardless :)

    I am BRCA - but they are doing a BRCA + trial with Cisplatin.


    Crs003 where are you being treated? I also asked for the carbo with taxol and age said to toxic :(

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  • inks
    inks Member Posts: 746
    edited May 2015

    If it's this trial Cisplatin vs Paclitaxel for Triple Neg then there are two arms. One will get cisplatin and the other will get conventional treatment, it is randomized. And they would prefer non BRCA , but they'll accept BRCA too. This trial does not show that cisplatin would be optional.

    Here is another cisplatin trial but this too is randomized, so you could not choose to get cisplatin. This will randomize women who have residual disease after neoadjuvant chemo to observation or cisplatin. Platinum Based Chemotherapy or Observation in Treating Patients With Residual Triple-Negative Basal-Like Breast Cancer Following Neoadjuvant Chemotherapy

    None of these trial will give you the option of getting the cisplatin "if you want to", they are randomized. Unless your trial is not listed. Regardless, both trials are very interesting and would help the TN subset. And BRCA+ has had good results in platinum based trials were a lot of women have gotten complete pathologic response. Good luck!

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  • LillieRose
    LillieRose Member Posts: 112
    edited May 2015

    This is my trial :) I got the Taxol randomized to me. My MO told me if I did the trial she would give me the option of Cisplatin later... It is not the norm. I am hoping to not have to do the Cisplatin (seems like chemo overload) but she will give me te option after the AC should I choose!

    Yes! They have had great results! Thank you for your info!

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  • bethdawn
    bethdawn Member Posts: 8
    edited October 2015

    I have recently been diagnosed with triple negative and trying to decide about the phase II clinical trial for cisplatin at dana farber in Boston? Wondering if you went ahead with trial and if so how are you doing

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  • 102215gigi
    102215gigi Member Posts: 2
    edited October 2015

    I was recently diagnosed last week and TNBC. I'm also BRAC1postiive. The MO said I too am eligible for a clinical trial using the same treatment plan as Lillie Rose wrote. I have to decide before Thursday because that is when they are doing my port and the trial requires another biopsy so they are going to do that when I'm under. To be honest I'm so overwhelmed and nervous about the fact that I even have breast cancer that I am not sure what are best treatment options for me. I didnt know I would have to decide my own treatment options. Has anyone else that is TNBC participated in a trial?

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    Hi 102215gigi-

    Welcome to BCO! It sounds like you've got some big decisions to make, in not a lot of time. We suggest heading over to our Clinical Trials forum, and perhaps starting your own topic about TNBC. Lots of good info there, and members willing to offer their insight and experiences!

    The Mods

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