Triple Neg Pathology / Oncology Specialists

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miffyjones
miffyjones Member Posts: 33
edited June 2014 in Triple-Negative Breast Cancer

Does anyone know who are the pathologists / oncologists in the USA or UK whose specialist field is Triple Negative or BRCA Breast Cancers. I live in New Zealand and we don't get many cases down here and while I have a great team, I want to get a second opinion from a team that is more familiar with TNBC / BRCA and treating it. I've got Lisa Carey at UNC, does anyone know of anyone else. I'm Stage 4 and disease is like a wild fire so I need to get onto this asap. Thanks heaps girls in advance for your support. Blessings

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  • christina1961
    christina1961 Member Posts: 736
    edited December 2011

    Dr. Gonzalez at MD Anderson is one - I went to see Dr. Carey Anders at UNC (she is there with Dr. Carey.)  I really liked Dr. Anders and thought the center was top rate.  I've heard really good things about MD Anderson.

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    thanks heaps christina - that's the two that I had been looking at - think I'll go with my gut instinct and look into these two. Many thanks for update.

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  • christina1961
    christina1961 Member Posts: 736
    edited December 2011

    You're welcome, Miffy - please keep us updated and let us all know how you are.  Sending positive thoughts your way and so sorry you are facing this.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Triple Negative Breast Cancer Foundation in USA http://www.tnbcfoundation.org/ may be able to help you.

    Several good doctors on their Board of Directors, and Advisors.

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  • nmiller1978
    nmiller1978 Member Posts: 107
    edited December 2011

    Hey MJ,

    I'm sorry I missed your posts, I'm in NY and I also have a couple recommendations for you,

    Dr. Judy Garber @ Dana Farber in Boston, Ma is supposed to be a BRCA specialist and Dr. Joyce O'Shaughnessy whom I believe is out of Baylor in Texas, she's supposed to be THE leading TN specialist. Best wishes. BTW, I saw you posted on my PARP thread. I was given Taxol/ Avastin for first round chemo in May, 2010. That put my liver into immediate remission and I've never had any metastatic activity since. I got 8 months out of that regimen and then switched to Inaparib (PARP inhibitor) with Carboplatin and Gemzar. I am still on that treatment plan and have been NED for over a year. My oncologist is baffled by my results but I'm not complaining!  It can totally be done, just put your mind in front of your body and you will be amazed at what can be accomplished. TN is tricky. I'm not sure what kind of access you have to certain drugs because of where you are but I believe Avastin is still available in Europe so I'm hoping you can get it. Avastin saved my life. Beg for this drug if you can get it!!! Prayers to you and your family. 

    Nicole 

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    Hey Nicole - YOur initials are the same as my best friend at high school - must be a sign from above - yes - your PARP post was a ray of hope for me - we met with the onc last night and had a very long meeting and feel a lot more positive - we are doing biopsies in surgery next week to make sure it is the same Triple Neg cancer, and then we will put a plan together. We did talk about a possible regimen like yours - just not sure of the PARP that we can get down here, but Avastin is a go down here. Our plan is to review the pathology and drug therapy here and then talk to some of these guys in the USA to see if they agree with our plan of attack. I'll keep you all posted. Thanks for sharing your hope and faith. God Bless. M

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  • Suze35
    Suze35 Member Posts: 1,045
    edited December 2011

    miffyjones - first of all, I want to say you are doing an amazing job advocating for yourself given your circumstances. This is NOT a give up and take what comes situation - there are many options for you that can give you a lot of wonderful time, with good quality of life. I HATE doctors who "push the inevitable". Well, we ALL face the inevitable, but that doesn't mean we should just curl into a ball and let it steamroll towards us!!



    I currently have bone, liver, and node mets throughout my abdomen. Thankfully my liver functions are still well within normal range, and the only problems I am having are bloating from the steroids (I'm weaning off of those now) and back pain that is well controlled with Morphine.



    I currently take Zometa for my bone mets, and they have been stable since diagnosis. When I received my initial Stage IV dx, I chose to participate in a clinical trial of Abraxane with or without Tigatzumab. In the end it didn't work, as I'm resistant to Abraxane, but it was worth trying as I did get the experimental drug. So I would definitely check with your MO to see if there are any trials you might be interested in. You can also go to www.clinicaltrials.gov and search yourself, narrowing down to country, region, key words, etc.



    I did try Avastin along with Xeloda myself, but it didn't work. For some, it is a great combo. I had very few SEs from the Avastin, and think that if you have access to the drug, it is worth trying. Some women again see miraculous results on it.



    I am currently on Eribulin (Halaven), which is a new drug and just approved last December. I also have several more I can try - Cisplatin, Navelbine, Gemzar, Ixempra, and some limited Adriamyacin. If Doxil is ever produced again, I can try that as well.



    I recommend also visiting www.tnbcfoundation.org, and checking out the message boards. The men and women there are extremely knowledgeable, and have some pretty impressive contacts at the major cancer centers across the country. Basically, they have a lot of "ins" to help you contact top notch pros.



    There is NO expiration date stamped anywhere on my body (only a few youthful tattoos lol). I told my doctor I want good quality of life with what time I have left - that's our goal. Seeing how much of a go-getter you are, I think you'll find there is still a lot of hope out there.



    My best to you,

    Susan

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    Hey Susan - thanks for that big shoulder to lean on. Its the usual - 2 young kids - i want to give it my all for them. Just to say though, we talked to my MO the other night a lot about platinum salts for TNs - apparently, it is a "theory" that we should respond better to chemo that includes platinum based salts like cicplatin / carboplatin??? I am expecting to see this as one of my first lines of attack. Like you, the taxanes did nothing for me at all. I'm leaning very much towards what Nicole had above, but I'll keep you all posted as I kow more. Thanks everyone.xxoo

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  • Suze35
    Suze35 Member Posts: 1,045
    edited December 2011

    miffyjones - yes, the platins have shown a lot of promise for TNs.  I actually did Carboplatin with Taxol for my initial treatments (back when I was Stage III), so unfortunately we think I'm resistant to Carbo as well. But I think Carbo and Gemzar will definitely be on the table for you, and is a good first choice.

    I also have young kids - 10, 7, 4 - so I can truly empathize.  I do my best to find joy in every day, take each one at a time, and live floating along the river Denial for a good portion of it.  Hugs.

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  • tracie23
    tracie23 Member Posts: 598
    edited December 2011

    I have a question.... Are you still triple negative even after you have had your breasts removed , had chemo etc...can another cancer come back and not be TN ?

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    suze35 - your diagnosis reads the same as mine - the only difference for me is that I am BRCA2+ as well. I must update my profile with my info. I'm doing the best I can, resting, eating well, and am debating should we go camping next week to this beautiful bay - its summer down here in little old NZ. Will wait and see how biopsy and treatment decisions go next week. Stay in touch. XXOO

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    tracie - i believe it can and that is why they are doing a biopsy on the new tumours to reconfirm before agreeing a new treatment regime. Though my MO did say that TN's tend to stay TN's???? Sorry cant be of more help

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    Hi TRacie - our diagnosis looks so simmilar - fewer BRCA 2s - what drug regimen were you on to treat your METS - have you had success? I've just gone Stage 4 and am in tghe process of reviewing direction we go for chemo. ANy insight would be welsome - cheers. Miffy

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  • miffyjones
    miffyjones Member Posts: 33
    edited December 2011

    well girls just did 11 hours transfusion of cisplatin, gemzar and avastin - feeling ok - back for another transfusion of gemzar next wednesday then a week off - i'd say the tumour on my sternum has already started to shrink from what i can feel. I'll keep you all posted ho i go - while going through this treatment also on the lookout for other treatments as back ups. thanks for support so far. xxoo

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited December 2011

    Miffyjones

    Keep posting! I hope this works really well for you. Meanwhile, go camping if you can.

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  • christina1961
    christina1961 Member Posts: 736
    edited January 2012

    Miffy,

    I'm happy to hear that the chemo seems to be working!  Please keep us posted! Hope the gemzar infusion doesn't take so long. 

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  • miffyjones
    miffyjones Member Posts: 33
    edited January 2012

    Thanks miffy muffin and christina - am so glad it feels like its working - just feel ill like ive never felt like it in my life. Makes the FEC Red devil fell like a walk in the park. Hopefully will pass sooner rather than later. Love 2 u

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  • bak94
    bak94 Member Posts: 1,846
    edited January 2012

    Miffy, why the 11 hour drip? I did ac as a 24 hour drip to limit bad effects on the heart and for better response (what my mo thinks). I have heard of very few others getting a longer drip.Glad it feels like it is working for you!

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  • miffyjones
    miffyjones Member Posts: 33
    edited January 2012

    Hi bak94 - I had a port in for my chemo last year but we had that taken out before the mets found so had to IV through my hand - very slow - but I'm not 100% sure why so long - but pretty sure because I don't have great veins. I'll be sure to ask and get a proper answer as I'd definitely like to get that happening faster if I could. Was pretty knackered afterwards. Love your pic too - must get one up of myself. xxoo

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  • suzette5956
    suzette5956 Member Posts: 14
    edited January 2012

    Hi miffyjones. I am also triple neg and live in Nelson, N.Z.. Good luck x

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  • miffyjones
    miffyjones Member Posts: 33
    edited January 2012

    Hey Suzette5956 - go the kiwi triple negs!!! LOL HOwz summer down there?? Ours has been so wet though the sun has finally come out this week.

     Just to let you all know, I've just completed my second round of treatment and MO wants a scan this Friday - he was'nt going to do one until my third go??? my bloods are all good and my haemaglobin has started to rise all by itself - not sure what that means - now I'm just" under normal for haemaglobin - but everything else is good. I've stopped coughing blood?? MO reduced my steroids to only 4mg and I'm on no pain medication at all???? Chemo regimen was HARD HARD HARD - now I have 2 glorious weeks off. Thinking positively about the scan. Will let you all know when I find out more next week. Love to you all. MJ

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