New Website just for Triple Negative Cancer

Options
2»

Comments

  • kristingraham
    kristingraham Member Posts: 2
    edited June 2007

    Thank you so much for sharing the website. Is there anyone out there who lives in San Diego, is triple negative and is premenopausal? THX

    · Share on FacebookShare on Twitter
  • kristingraham
    kristingraham Member Posts: 2
    edited June 2007
    I would love to know who your team of doc's in LA are. I have been seeing a top doc in OC that has 4 or 5 locations in the OC/LA area and I am wondering if it is the same doctor. If not, I would love to have another referral for a top doc in the area because its always good to have additional opinions.

    If you dont feel comfortable posting his name on this site we can figure out another way to communicate.

    K
    · Share on FacebookShare on Twitter
  • mosesrise
    mosesrise Member Posts: 3
    edited June 2007
    Hi K-
    I am sorry it took me so long to answer you. I had my handbag stolen (we all know how much fun that can be) plus we are putting the finishing touches on a newly built home! Whew!
    My BS was Dr. Mel Silverstein, Norris Cancer Center, USC Keck School of Medicine. My oncologists are James Waisman, MD and John Link, MD. (They have written 2 highly regarded books on breast cancer). Dr. Link founded the BREASTLINK centers in LA. They are at the forefront of research and treatment protocols for ALL types of breast cancer. You can go to their website breastlink.com and learn more about them and their organization. I can't say enough good things about all of them. The one where I went for chemo is in Manhattan Beach. I do know there are several top docs in OC as well. Again, I'm sorry for the late reply. Best of luck to you and all the ladies on this discussion board. mosesrise
    · Share on FacebookShare on Twitter
  • ssclark8267
    ssclark8267 Member Posts: 2
    edited June 2007
    It seems to me, with the relatively small population of triple negs, that we could help the researchers to identify similarities--through surveys of each other to find out what similarities we have. In the morning Memphis newspaper, there is an article about triple neg being most common in African American women, and in non-breast feeding women. To the website -- is there a research group that we could feed info to as to our lifestyles, our diet, etc.? It seems that everytime I read about triple negative that I don't "fall into" that set of characteristics. Surely there is something strange that we have in common, though. For example, is there a survey that we could fill out to send to researchers? I've heard of the sister study for the more common bc.
    Anything similar to that out there for triple negs?
    · Share on FacebookShare on Twitter
  • twink
    twink Member Posts: 1,574
    edited June 2007
    Hi ssclark,
    I'm not aware of any survey for collecting triple negative BC lifestyle info. I too, don't find that I fall into most of the risk groups id'd for BC, never mind triple negative BC. I do believe, as Dr. Roberts said at a recent web conference, that triple negative tumors are another group (not all identical) for which the variables that promote growth have just not yet been identified. All triple negs are not the same. I sure wish they'd figure out what makes it grow though....
    · Share on FacebookShare on Twitter
  • hayleyd1
    hayleyd1 Member Posts: 3
    edited June 2007
    Hi ssclark,

    I am on the Board of the Triple Negative Breast Cancer Foundation. We are currently working on sponsoring a symposium dedicated to triple negative breast cancer. To our knowledge, there has never been a forum for professionals working on TNBC (doctors, scientists, geneticists etc) to come together to share their research, data and ideas. We believe that such a forum is a great jumping off point for finding a cure. We are working on setting something up. As soon as we have more details, we will share them on the site. This chat room will be an excellent way for us to reach out to triple negs to get data once we know what kind of information is needed. We will definitely be in touch.....
    · Share on FacebookShare on Twitter
  • tos
    tos Member Posts: 376
    edited June 2007
    Twink, you say that all triple negs are not the same, that there are variables, do you have a link or something that I can read on this?
    I don't fall into the usual group either.
    · Share on FacebookShare on Twitter
  • twink
    twink Member Posts: 1,574
    edited June 2007
    Hi Pam,
    No, I don't have a link. I was paraphrasing Dr. Roberts in last week's web conference on the Chicago ASCO session. He said (to paraphrase) that triple negative tumors are a 'group', and the 'variables' that promote growth simply haven't yet been identified (like the hormone receptors for ER and PR). The text for that conference is supposed to be available on this website on June 29th.
    · Share on FacebookShare on Twitter
  • Indigoblue
    Indigoblue Member Posts: 274
    edited June 2007
    You are right about one thing, triple negative hormone receptors cancer subtypes suck, stink, horrify, stupify, and nobody really knows why...

    I have a few theories, one being that of genetics; hereditary and/or cell structure which either harbor the innate ability to protect our fragile, complicated systems from the invasion of any or all toxic elements which alter cell stucture and decode what is a natural physiological barrier used for survival; such as the lymph nodes, the mechanism used to clean out the waste matter, and other debree evolving as cells, blood, tissue, etc. regenerate.

    One defect in the DNA will mutate the normal response as to how much protection is needed to keep the engine (our bodies) running smoothly. It can occur at birth, childhood, teenage years, young adulthood, or at any time in life; genetic patterns alter themselves, and are programmed to change or morph like a calidascope as we age.

    Virus, toxic elements, environmental changes, sunspots, bacteria, the water cycle, nitrogen, oxygen, other diseases, vaccines, flu shots; who knows what triggers and grips the proteins, white and red blood cells, hormones, or whatever it is to grow wild enough to destroy surrounding tissue and cell structure?

    The fact that no two breast cancers are alike in any two women (or other types of cancers, as well) is truly amazing when you look at much of the research studies.

    The variables are so variable, it seems like science and research is missing the big picture!

    Pesticides, poisons, minerals, air quality, destruction of habitat, oil, nuclear power plants, water resources, tephlon, pcb's, the list is endless.

    Personally, I feel like I've bought a little time, and it's so strange to think we're using poison to kill a disease most likely produced by poison on an extremely toxic planet; and an increasingly worsening one at that because human kind and their irresponsible treatment of a world more fragile than our own bodies.

    indi
    · Share on FacebookShare on Twitter
  • tos
    tos Member Posts: 376
    edited June 2007
    Hi Twink, thanks for writing back. Since seeing your post yesterday and doing some research on my own I have read what you are talking about, that there are variables in trip negs and they are not all alike.
    I'm looking forward to reading the text from the contest,
    · Share on FacebookShare on Twitter
  • maxgirl
    maxgirl Member Posts: 407
    edited July 2007
    Quote:

    I've heard of the sister study for the more common bc.
    Anything similar to that out there for triple negs?



    I'm not sure if this is the same sister study, but The Sister Study sponsored by the National Institute of Environmental Health Sciences is looking at environmental and genetic risk factors for all kinds of breast cancer. They're enrolling up to 50,000 sisters of women who have had BC (living and deceased) and will follow them for 14 years to see who does or does not develop BC.

    www.sisterstudy.org

    One of my sisters is already enrolled.
    · Share on FacebookShare on Twitter
  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    I just asked on another post if "negative" was better than "positive". I didn't know. I'm new at this.
    I'm triple negative and now, more worried than ever.
    · Share on FacebookShare on Twitter
  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    I have another question....if triple negative is so bad than why....am I done after Taxatere? My onc says that's all I will need. Nothing else. No pills....nothing.
    I thought this meant I was in the good kind of bc group!!
    This post has me distraught. I'm scared to look at the website and can't get my onc on the phone.
    Traci
    · Share on FacebookShare on Twitter
  • twink
    twink Member Posts: 1,574
    edited July 2007
    Traci,
    It can be quite daunting and depressing reading much of what's available on the web.

    You're done after the chemo because the targeted therapies (like hormonal) don't have any effect on a cancer that's not receptive to hormones (ER, PR) or growth protein (HER2/neu). Those three things do not play a role in encouraging triple negative receptor cancer to grow... other things do that have not yet been identified. On the bright side, so many folks say that triple negative BC responds very well to chemo. In my personal experience, I had neo-adjuvant chemo (DD ACX4, DD TaxotereX4) and my tumor went from 3.5 cm to less than 2 mm before my surgery last month. Now that's a response to chemo! Chin up Traci...just look at all the triple negative survivors!
    · Share on FacebookShare on Twitter
  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    Thanks for the kind words Twink. Can I ask you a question? If you knew that triple negative was so bad...and that recurrance was almost a given...then why didn't you opt for a mastectomy? I didn't even know trip neg was bad and I made them cut both my boobs off. Probably cuz my 'lil sis had one boob cut off ten years ago and gets scared to death every six months when they mammo her remaining boob.
    I don't know if she was trip neg though.....
    I guess I feel cheated by my oncologist. He gave me no indication whatsoever that I had a "rare" form of breast cancer.
    I'm glad I found this website...otherwise, I still be in the dark.
    Sorry to be so negative. (no pun intended)
    : ) Traci
    · Share on FacebookShare on Twitter
  • twink
    twink Member Posts: 1,574
    edited July 2007

    Hi Traci...first of all, I don't buy into the 'recurrence is a given' line...there are many triple negs right here who have not had a recurrence. Also, triple negative is not all that rare...10% or so I recall reading. In any case, the surgery I had last month was a bilateral mastectomy. At that point I did have the option of a lumpectomy but felt the bilat was a better decision (the right one was prophylactic). Good luck to you Traci. Feel free to PM me if you want more details since you're a few months behind me in treatment (I did chemo first, then surgery)

    · Share on FacebookShare on Twitter
  • tos
    tos Member Posts: 376
    edited July 2007
    Traci, I have read that trip negs have a bit of higher chance of recurrence in the first five years and then it levels out w/the positives.
    I was dx again earlier this year after 4 1/2 years and currently doing Taxotere.
    Not everyone gets it back!
    I did choose a bilateral mastectomy this time since I wanted to lower my odds, that was a personal decision since I have a heavy history of c in the family and my daugher had just been dx the month before me so I knew something was wrong. We both went on to test for the BRCA mutations and we are both positive for brca 1.
    My daughter did have a unilateral mastectomy when she was dx since she was multifocal, she had two tumors on one side and will have the other breast removed and have reconstruction when she is finished w/her rads which she is beginning to start.

    The first time I was diagnosed my Onc never said a word to me about being triple neg and I was uneducated, didn't get on my puter to learn anything until about 2 yrs ago and began to ask questions. By that time my Onc had retired and my new Onc is thankfully open to any questions from me and so I ask away! Because of the internet and places like this board I have been able to learn about my situation, new meds that are out there and learning anything new that I can, I take him copies of things too and he politely asks for them to read.

    Best wishes

    Best wishes to you
    · Share on FacebookShare on Twitter
  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    Pam, so sorry to hear about your recurrence and especially...that your daughter has it too. Hearing that woke me up a little bit.
    I need to quit my bitchin' and just deal with it like all of you guys on this site.
    Thanks for the info and best of luck to you and your daughter.
    : ) Traci
    · Share on FacebookShare on Twitter
  • tos
    tos Member Posts: 376
    edited July 2007
    Thank you Traci, just remember it doesn't come back to everyone, you should be fine. No doubt about it geting dx is a tough time and we all have our ups and downs no matter what our personal situation is but we just have to kick some fanny and fight away the beast. Hold positive thoughts best you can, try taking it day by day, minute by minute if you have to, it will get better.

    Good luck to you
    · Share on FacebookShare on Twitter
  • ritimosa
    ritimosa Member Posts: 17
    edited July 2007

    But nothing it sucks. I guess I never really went into remission. I was all done with rads in Nov. I had completed all my chemo and a lumpectomy. I thought wow that was not so bad. Then in April after a CT scan I was told my BC had spread to both lungs. I'm now on Xeloda and avastin. I feel worse then I ever did last year and I was on some strong chemo. Good luck to you all.

    · Share on FacebookShare on Twitter
  • tos
    tos Member Posts: 376
    edited July 2007
    Tina sweetie I'm so sorry your bc has spread to your lungs and so quickly! A big cyber hug to you and hope that the Xeloda and Avastin will help you to get better.
    I hate cancer!
    · Share on FacebookShare on Twitter
  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    Tina,
    I just sent you this in a PM too but wasn't sure which would get to you faster.
    Hi Tina,
    I am sooooo sorry to hear about that it spread to your lungs. It scares me to death.

    Did you see the post about the guy who's wife was practically dead and giving up and then decided to try one more time with the drug called Carboplatin?? I didn't write down his name but he said...she is doing wonderful now!!!
    Maybe we should start a new thread with that name in it. I don't know how to do that though....
    Good luck Tina.
    You are in my thoughts. Please post regulary so we know how your doing.
    Traci
    · Share on FacebookShare on Twitter
  • fd411
    fd411 Member Posts: 398
    edited July 2007
    Tina,

    I'm in the same boat as you. I had strong chemo and lumpectomy and rads as well. Finished rads in January and mets diagnosed in May. I just started chemo and I'm hoping the chemo will calm things down a bit.

    Ferne
    · Share on FacebookShare on Twitter
  • Cyl
    Cyl Member Posts: 3
    edited August 2007

    I was glad to see this site. It is daunting what we have to face but I like to see what this is about as I always hear about the positive BC sites. Thanks so much.

    · Share on FacebookShare on Twitter
  • SoapMaker
    SoapMaker Member Posts: 157
    edited August 2007
    Quote:

    Hi Traci...first of all, I don't buy into the 'recurrence is a given' line...there are many triple negs right here who have not had a recurrence. Also, triple negative is not all that rare...10% or so I recall reading. In any case, the surgery I had last month was a bilateral mastectomy. At that point I did have the option of a lumpectomy but felt the bilat was a better decision (the right one was prophylactic). Good luck to you Traci. Feel free to PM me if you want more details since you're a few months behind me in treatment (I did chemo first, then surgery)



    I am triple neg, with a horrid pathology. I am five years out (knock on wood) and doing well, so far. I had 4 ac, 4 taxotere and 33 rads.

    ----------------------------------------------------------
    Where is the cure
    www.truefacesofbreastcancer.org
    · Share on FacebookShare on Twitter
  • claire814
    claire814 Member Posts: 7
    edited October 2007

    I agree - I want to know everything that is available and continue to search for information.  My physician didn't refer to my cancer as triple negative so the term was new to me when I met with the genetic counselors and they used the term. I have a 3 month follow-up appointment with oncologist on 10/26 following a 10/22 genetic testing report so I will be full of questions!  I will continue to learn as much as possible prior to both appointments - if only I can remember my questions :)  As far as memory issues - mine are severe at this point however, I use Outlook for appointment scheduling so - if I can remember - I add questions to my appointment dates and whip out my BlackBerry when I have appointments.  It has worked out very well.  I also keep a tablet in my purse and one on the desk of every person I conduct business with in the office.  Remembering to carry a tablet with me at the office hasn't worked and I really don't want to tether one to myself.

    · Share on FacebookShare on Twitter

Categories