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janinvan
janinvan Member Posts: 83
edited June 2014 in Triple-Negative Breast Cancer

Where in the  U.S. are breast cancer centers/hospitals which are known for their recent treatment/knowledge/ new? medication trials for triple negative patients ?

After doxcetaxol chemo, radiation,  --I still have most of the cancer cells left, from a recurrence on my  masectomy site chest wall  (on pectoral muscle, near collar  bone)

 I don't think surgery is an option because of the complexity of that area.( I previously consulted with 2)

I have a  very good oncologist...however...my diagnosis was ......because they insisted the swelling was lymphodema !

Is CA 15-3 more connected to triple neg?

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  • jeanne46
    jeanne46 Member Posts: 1,941
    edited October 2008

    There are no centers that I know of that specialize in triplenegs.  There are, however, some oncologists (in various centers) that are considered experts in triple neg. disease.  Here are a few of I've heard of:

    Lisa Carey, UNC Chapel Hill

    Hope Rugo, at UCSF 

    Joyce O'Shaughnessy, US ONcology (Dallas, TX)

    Vicente Valero, MD Anderson

    Judy Garber & Harold Burnstein, Dana Farber in Boston 

    CA15-3 and CA 27-29 are blood tests for tumor markers.  I don't think they are associated with one kind of bc over another.  They can sometimes be helpful in monitoring mets treatment. However, some people with a lot of tumor load can test out in normal range on these blood tests.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2008

    My research also finds there are no real TN specialist.  Just doctor who work in clinic that have more access to more chemo, and have been authorized to use these chemo's out side of standard protocol.  That is the bottom line, there is a "standard protocol" for each stage of bc. TN do very ever so slightly...but bottom line is you are going to get the same chemo's just in a different order. The big deciding after is where your recurrence is located has some bearing on next chemo option.  Just make sure your clinic and doctor has access to all the new chemo's.  Example are they using Ixempra at you clinic?  These specialist are treating as in a trial with know real proof they will work.  They are looking at new options for down the road. You want proven options.  I have spoke with other who have done consultants with these doctor's and were not told anymore options than my local doctor has access too. The key is to watch the girls who are one step ahead of you and see how they are being treated with.  That is one of the great things about this site.  You can watch how other are being treated and responding. 

    janinvan - Chest wall recurrence choices usually are Gemzar-Carboplatinum-Avastin or the new drug Ixempra.  This will change depending on what chemos you have already taken. They try to move off chemo families you already been exposed too, and wait and use that family of chemo's at a later date again if need be. You toxicity level also will control your next chemo choice. There are quite a few of us that have disease in the same area as you do. Good luck finding the best treatment. Your doctor can do a phone consult with any of these doctor's also.

    Flalady

    PS I just had PM from someone who did a consult with Dr Carey. After standard treatment option and chemo's run dry...they are going back to old chemo's and trying them one by one. This is the third of fourth person I know who pretty much got told the same thing. Boy! I wish we TN would get more research $$ and fast. 

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  • debk55
    debk55 Member Posts: 108
    edited October 2008

    Hi,

    I am just going to be starting a clinical trial for 3 neg in ann arbor it is E5103 with avastin added to AC & T. So I know they are doing some research on us 3negs. I do not know where you are located but the DR Susan love book has all the  NCI centes in it and they are up on the most recent clinical trials. If you do not have that let me know where you are and I can look up what one would be near you, I have the book. I have heard good things about avastin as it targets the blood supply to the cancer cells. My onc rec I get in the trial if I wanted to due to being 3neg. I live in MI and Uof M is a NCI center although I am going to ST Joe Mercy just a few miles away. They are both research hospitals, I just knew of the bs that I wanted at ST Joe.  Hope this info helped some. Love and prayers to you and all of us in this fight.  Deb :)

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  • VickiG
    VickiG Member Posts: 536
    edited October 2008

    Today I completed my first cycle of Navelbine & next cycle we will be adding Avastin.  I'm already seeing improvement w/ Navelbine, so I'm really hopeful that adding Avastin to it will knock the crap out of this!!!!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2008

    Girls Avastin has worked pretty good for me.  I had Avastin three years ago outside of trials.  My local oncologist pretty much uses Avastin for anyone who has aggressive disease. I have been on Avastin again for the last six months.  Avastin is one of the few drugs that they can give you longterm and with multiple kinds of chemo.  They still not total sure it does all it suppose to, but they are very hopeful.  They say it will be five years before they truly know the all story.

    debk50-  Good luck on your trial.  My onc. is already using this protocol, again outside of a trial. Most do not have side effects from Avastin.  Some do get a bloody nose.  Also the other side effect is tightness in your chest wall.  Make sure you drink a lot of water.  Avastin is hard on your kidneys.  They will do a urine test each time before giving you the Avastin to check them.

    VickiG- You go girl! I hope this does kick some major butt for you! What are the side effect of Navelbine? I don't think I have met anyone doing this protocol.

    Flalady

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  • MarlyD
    MarlyD Member Posts: 41
    edited October 2008

    Hi Ladies,

    I am on a research protocol for triple-negative disease at Massachusetts General Hospital in Boston.  My oncologist is Dr. Paula Ryan, who is the Principal Investigator working with Dr. Judy Garber from Dana Farber.  I had neo-adjuvant chemo which consisted of 3 cycles of Avastin and 4 cycles of Cisplatin, of which I had my last round on October 8.  My mastectomy is scheduled for November 7 and my surgeon is Dr. Michele Gadd.  The Cisplatin/Avastin combo significantly shrunk my tumor (which was 3.2cm); I did have a positive lymph node in my sub-pectoral muscle, which also has shrunk and an axillary lymph node which was termed "reactive", but they found no cancer in it.  Dr. Gadd will be removing my axillary nodes as well as (I think) try to remove the sub-pec node.  After surgery, they have me waiting a month prior to begining Adriamycin/Cytoxan/Avastin, which will be every 2 weeks for 4 cycles, then Taxol/Avastin, every 2 weeks for 4 cycles, then, possibly radiation.

    Having had only the Cisplatin for the last round, I know that is the stuff that really kicks your butt.  It is very hard on the kidneys which is why they had me on a saline drip for 2 hours prior to getting the chemo as well as taking potassium and magnesium for 7 days after.  I was advised to drink lots of fluids, as well.  The Avastin also causes kidney problems along with bleeding and wound healing problems.

    Marly

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited October 2008

    Cam began with TAC plus Avastin, her Onc was determined to get complete clinical response and clear lymph nodes before beginning the local treatment, MRM or Rads, Like many he scanned after every thrid treatment, and did CA's and CTC's before every treatment.  As soon as he saw the progress of reducing tumors or markers slow, he would change treatments.  First change was after 5 treatments he switched to Gemzar, Carpo, plus Avastin.  After 4 treatments he switched to Ixempra plus Xeloda.  All of these were still reducing tumors and CA's, but each change jump started the speed of the reduction.  Cam now has full response and no signs of tumors according to last PET/CT scans, including lymphnodes. 

    She is now doing only Ixempra while waiting for next phase.  For her it will be full chest,/chest wall Radiation.  There will be no MRM or surgery.  Her skin was so involved, Onc does not want to do any cuts or scar lines where IBC has a tendacy to reappear. 

    The Aggressive treatment and working hard with Supportive Care dept to manage SE's was hard on her, and did harm her heart.  A heart cath done through the control of Cancer managers shows no damage to heart muscle, and a full recovery of heart function is expected.  This is another side effect of Avastin, low LVEF. 

    Aggressive treatment and getting a complete response in Lymph nodes gives the best prognosis on aggressive cancer and TN.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited October 2008

    ibcspouse,

    Thanks for sharing Cam story as always.  Her story is a inspiration for me to continue.

    Let me know how she does with full chest wall rads.  I think I may have to do this too...

    Best wishes to you both,

    Flalady

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited October 2008

    FloridaLady

    It is you we should thank, the early trials that you did. even with the risk on trying to set dosages, has helped all of us.  It made your road much harder.  So to you I salute. 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited November 2008

    bless you ibcspouse...your words brings me to tears...

    Flalady

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  • VickiG
    VickiG Member Posts: 536
    edited November 2008

    Thank you for the update ibcspouse, and I completely agree w/ you about Flalady!!!!  I have so much skin involvement that it makes me wonder if it's really IDC mets or if I also have IBC... guess it doesn't matter much tho, does it since I'm in tx regardless.  I really hate this disease!

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  • sean456
    sean456 Member Posts: 2
    edited May 2009

    It is not about the how many cancer hospital are available but how many people are aware from it. Most of the women are subside the breast cancer or enchased the stages of cancer with intake of drugs with out any awareness/information.

    --------

    sean cruz

    Tennessee Drug Treatment Centers
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