Triple Negative not resonding to chemo and possible BRCA +

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Karen3
Karen3 Member Posts: 307
edited June 2014 in Triple-Negative Breast Cancer

Dear all

 I am having chemo with my tumour in situ because I was told that they only have chemo to treat triple neg and so it was important they get it right. They started me on Cyclophosphamide (Cytoxan) combined with Epirubicin (Ellence). I have regural MRI's to see how the tumour is responding. the idea is that if the mature cancer cells in the tumour respond then the immature cancer cells in my blood stream will also be killed. But, the MRI's show the tumour is GROWING and is now 3.5 cm's. They have switched me to a new chemo and I had my first infusion of that on 5th Nov and my secon infusion yesterday. It's called Docetaxel (Taxotere) which they give to patients after 'failure of first treatment'. I can STILL feel the tumour as it is near my breast bone. I have now had FOUR infusions in all and was told that usually triple neg tumour 'melt away'. But mine insn't. 

My next MRI is on the 9th December and I have been told to 'prepare myself' that the cancer will not respond. They expect me to be straight into surgery as Christmas. If I am BRCA + (they are rushing through the tests results now) they have recommended both breasts and ovaries removed. But, I am still worried about mets beacuse if I am not responding to chemo, then the tumour cells in my blood stream will still be there which could later become secondaries.

 Has anyone here gone through this? Also any triple negs in the UK I can link up with?

 Karen XXXX

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited November 2009

    Karen, I can't help as I'm not triple neg-but I can give you details of an excellent forum in the UK which I also use. Please come and join us-there are quite a few triple neg girls who I'm sure would be happy to help you.

    http://bcpals.org.uk/forums/

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  • lissette80901
    lissette80901 Member Posts: 62
    edited November 2009

    Hi Karen,

    Sorry to hear about your experience.  I did 3 months of adramiacyn and cytoxin, but my tumor did not respond.  I had a mastectomy and my margins and lymph nodes were clear.  Then I did taxol.  I have radiation coming up too.  I think you'll be ok.  I have heard of other women whose tumors did not respond.  It's going to be ok.  Better to know now so that you don't waste time!

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  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited November 2009

    Karen,

     If you indeed BRCA+ you MAY be eligible to get in a trial for what is called a PARP inhibitor. For more information on the BRCA and triple neg BC go to...

    www.facingourrisk.org (FORCE) just about everyone there is either BRCA+/ high risk and or has had cancer..most triple neg. You will be most welcome and we DO have women from "across the pond" who have been on your shoes,

    Warmly,marcia

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited November 2009

    Marcia, Karen is in the U.K and so wouldn't qualify for the PARP trial . I've just completed cycle 8 on it, and here it is only open to BRCA1/2 and ovarian cancers. They are planning on adding in another group-but it will be for prostate cancer sufferers, so this won't help her either, I'm afraid.

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  • maggie14
    maggie14 Member Posts: 26
    edited November 2009

    Hi Karen, I'm in Belgium (one more time zone east) and have a triple neg 2-cm tumor coming out in two weeks.  I'm also scared that my agressive tumor is growing, since the mamogram three weeks ago only showed a 1.5 cm tumor...at this rate, what will it be like in 14 days?

     From what I can gather, the research conducted in the UK and here on the continent is quite similar.  I've been enroled in a clinical trial to extract genetic material from the TUMOR (not my genes, but the beast's) to see whether they can better target the chemo that I'll receive starting in January.  Right now the ONC has mentioned each of the drugs you're on now and said they'll be part of my treatment.  Maybe you could ask your oncologist about the "microarray" or "genomique" tests out of the Netherlands Cancer Institute in Amsterdam.

     I wish you all the best in your treatments and results...do let us know your successes, however small!  

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  • TammyLou
    TammyLou Member Posts: 740
    edited November 2009

    Well, here's a note from the jack@ss in the corner...

     At this point, you have nothing to lose...and everything to gain.  

    Removal of both breasts will reduce your risk of contralateral breast cancer...ER negs have TRIPLE the risk of other ER+ patients, largely because tamoxifen / hormonals will not help us reduce our risk.

    As far as the BRCA goes, you will certainly need to consider removal...either now, or in the future. 

    One thing to keep in mind is that IMAGING does not always tell the story.  Sometimes, cells die and leave masses.  (The swiss cheese plus inflammation effect.)

    Whereas, I do think that it is a good idea to try to prepare yourself mentally for less than stellar news, I also think that it is worth keeping in mind that radiation is a very effective tool in the treatment of breast cancer...and you still have that ahead of you.

    Cancer and cancer treatment is a very peculiar business.  I am sorry that the prospects aren't better at this time...but, I hope that you get better news than the doctors are expecting.  

    tl 

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  • TammyLou
    TammyLou Member Posts: 740
    edited November 2009

    P.S.  I took Taxotere as first line chemotherapy.

    It has been proven, again and again, as effective as the anthracycines (like the epirubin), without the cardiotoxic effects and it is possible that the cancer will be very effectively killed by it.

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  • Karen3
    Karen3 Member Posts: 307
    edited November 2009

    Hi all

     Just to say thank you for all your responses. I am a bit poorly at the moment - I had a bad reaction to chemo on Thursday. So I will be back on here in a day or so. You've all given me a lot to think about. Thank you XXXX.

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  • bf2009
    bf2009 Member Posts: 40
    edited November 2009

    Karen, OMG how disappointing the tumor is not shrinking !

    I don't have any answers for you as I'm new to breast cancer and haven't even started my chemo yet, but I am triple negative and read that some TN does not respond to therapy. All I wanted to say is you'll be in my prayers.

    What about rads? you had that yet? I read that shrinks tumors too. I don't think your out of options yet.

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  • NewportLori
    NewportLori Member Posts: 67
    edited December 2009

    Karen, surgery is still primary therapy for TN BC, although neoadjuvant chemotherapy can be beneficial to see if the chemo works on the specific BC.  From what I understand, it may be necessary try different chemo drugs to see what works.  In the US, the TC regimine (Taxotere and Cytoxin) you are apparently currently on is often the first choice due to studies conducted by UCLA that show it has advantages over AC..

    Although my cancer is slightly ER and PR positive, my main tumor was so big (5.8 cm) that I also had neoadjuvant chemo.  My regimine was TC X 6.  The first two follow-up MRI's showed significant shrinkage of main tumor and disappearance of the smaller two tumors (1.6 and 1.0 cm). Next F/U MRI to come next week with mastectomy in January to be followed by rad tx. 

    A friend with TN BC who had surgery before chemo consulted 3 oncs.  One recommended Cisplatin and Gemstar but the other two strongly recommended TC.  She ended up getting TC X 4, but because her tumor was already removed, it wasn't possible to see if the chemo was effective on her particular BC.  Fortunately her tumor was small and nodes were neg.

    Best wishes to you in your treatment and an ultimate cure.

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