Where are the tri-negs!

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    I had a recurrence in other breast also. I had my 2nd mast a year later than my first.  I hope the scans today bring you good news and it's not bc.

    Flalady

  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    pinkdove - i have two sons and have been bombarding them with info on how to prevent cancer. i really like this info:

    http://www.who.int/mediacentre/multimedia/podcasts/2009/cancer_childhood_20090206/en/index.html

    http://www.caring4cancer.com/go/cancer/nutrition/questions/aicr-cancer-prevention-guidelines.htm

    sheilaps - i agree with flalady - i hope the scans bring you good news today. 

  • Nanalinda
    Nanalinda Member Posts: 826
    edited July 2009

    Flalady:  I am thankful I have not yet had a blood clot (knock on wood).

    Vicki: It sounds like you have a lot to deal with.   Hang in there and fight hard.  I will be praying for you.

  • carolinachick
    carolinachick Member Posts: 387
    edited July 2009

    Sheilaps - I hope you get good news today.

    My tumor was also high on my breast and close to the chest wall.  I actually found the lump when I was in the shower washing under my arm.  I had not heard that TN tumors are typically found near the chest wall.  I also didn't know about the blood clots.  Such good information is passed on here.

    I have my first post-treatment mammogram next Thursday, so that will be an emotional experience.

  • Nanalinda
    Nanalinda Member Posts: 826
    edited July 2009

    I found my cancer in the shower also.  It was more of a firmness in that area rather than a lump.  Wasn't really sure of what I was feeling.  I waited two weeks to call the Dr.  When I noticed that the area had doubled in size during that two week period, I called my Dr. right away.  And of course my life changed forever after that.

    Good luck on the mamo.  I hope you get great news.

  • living4today
    living4today Member Posts: 215
    edited July 2009

    Sheilaps: I am glad you are getting the other breast checked out.  I had  a bilat mast in Dec: we knew about the cancer on the left, found cancer on the right when pathology came back.  So very thankful that they found it...good luck and  hope yours comes back b9.

  • Janet22664
    Janet22664 Member Posts: 155
    edited July 2009

    Living4today:  Did you have reconstruction when you had your bilateral mastectomy in December?  I am looking into my options which seem to be implants or DIEP. 

    Janet

  • living4today
    living4today Member Posts: 215
    edited July 2009

    Janet-yes, I had immediate reconstruction.  My expanders were fully expanded before chemo, found out today that I will have to have a bit of fluid taken out of both of them for rads (a little too perky I guess:)(they are doing rads to both breasts), and I can go in for my new "girls" in Feb/March 2010.  Although the expanders were painful at first and they create a very firm chest...I have been pleased.  The best part--no braa for a year:) Them girls aren't moving! 

  • packergirl
    packergirl Member Posts: 172
    edited July 2009

    Hey ladies! Pretty new to this site. Was reading through this thread and was wondering about Zometa as a preventative drug. What is ONJ? (someone declined use of Zometa due to risk of ONJ). I have had 2 oncologists say that recently there has been data published supporting giving Zometa to those with NED to prevent the spread to bones. Neither onc specified that it is only good for ER+ (as stated in this thread). Any idea how I could find the literature that states it is of no use for TN's?

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited May 2013

    Hi,

    My onc just started me on Aredia - the same family of drugs as Zometa -(they are both bisphosphonates) to help prevent bone mets. I have had one tx so far. Each takes about 4 hours. I am scheduled to take this once a month for 12 months. I was also informed that this aredia gives strength back to our bones that are weakened from the chemo (I had 4 taxol & 4 AC txs).

    I looked up ONJ (I have not heard of this. I will be seeing my onc tomorrow and will definitely ask about it as the Aredia falls in the same category of meds and has the same possibility for this), but ONJ stands for: Osteonecrosis of the jaw (ONJ) Osteonecrosis is a disease resulting from the temporary or permanent loss of blood supply to the bones.

    That sounds awful! So I definitely will ask about it.

    C

  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    Hi

    I was wondering....

    is it true that tri-negs usually dont have any post chemo/rads drugs.  like Herceptin ect.

    Thanks 

    Uma

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited May 2013

    trip -'s have a higher incidence (percentage chance - learned not from my doc but from members of this site (he only said it helps prevent it NOT that I have a higher chance of getting it) - proves one must always check out what one hears and learn all the facts before mentioning things to others  Sealed) of getting bone mets and that is why my doc is having me do the aredia.He also has me doing this aredia to make my bones stronger! from the chemo tx's.

    He also told me that anything else he learns of he will let me know to give me the option to be treated with it or not as he is treating this agressively and wants me to have every opportunity out there.

    In the end, the choice is up to me (us)

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    nana,

    I don't know where your doctor did his research but TN do not have higher incidence of bone mets. TN is the smallest % by far of any kind of bc. The highest is Hormone+ and than her2 is not far behind.  TN has the highest incidence of brain mets.  Most of the ladies we lost this year were from spine and brain mets.

    See the stage iv threads and this will show our progession..

    Flalady

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    nana,

    I don't know where your doctor did his research but TN do not have higher incidence of bone mets. TN is the smallest % by far of any kind of bc. The highest is Hormone+ and than her2 is not far behind.  TN has the highest incidence of brain mets.  Most of the ladies we lost this year were from spine and brain mets with lung mets.

    See the stage iv threads and this will show our progession..

    Flalady

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited May 2013

    I learned not from my doc but from members of this site - proves one must always check out what one hears and learn all the facts before telling/straightening out others - such as assuming it's their doc giving them the info

  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    i declined zometa because of the risk of ONJ, even though i have never had any dental issues. my med onc at UCSF, even though he recommended zometa (yes, even though i am triple negative), felt that i had lowered my risk of recurrence as much as i possibly could with a bilateral mastectomy, aggressive chemo of dose dense AC/T, and 33 radiation treatments, and that declining zometa was not going to significantly change my outcome. one look at this photo was all it took for me to decide, even though i realize the risk is small: http://www.onj-net.org/osteonecrosis-photos-fosamax.htm - i asked my dentist what he thought, and he said the risk is small in my case but if i were on zometa and had, for example, a car accident and the teeth were injured, then ONJ would be a risk. HOWEVER, if my med onc had strongly recommended zometa and said that my changes of reducing recurrence would be greatly reduced, i'd think about it. 

  • Nanalinda
    Nanalinda Member Posts: 826
    edited July 2009

    NanaOfTen:  I see you edited your post.  I am quite sure when I read it earlier that you stated your Dr. said TN had a greater risk of bone mets.  I don't think Flalady assumed anything but read the same statement I did. 

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited May 2013

    No, it said trip- had a gtreater risk, it didn't say my doc said I had a greater risk of bone mets, only that my doc said aredia reduced the chance of it.


    I edited it to add: learned not from my doc but from members of this site (he only said it helps prevent it NOT that I have a higher chance of getting it) - proves one must always check out what one hears and learn all the facts before mentioning things to others Sealed) of getting bone mets and that is why my doc is having me do the aredia.He also has me doing this aredia to make my bones stronger! from the chemo tx's.

    and persons wonder why I hardly post here ...

  • LRM216
    LRM216 Member Posts: 2,115
    edited July 2009

    Is the hostility really necessary towards Nana of Ten?  If a mistake was made, hey, we all make them from time to time, and if no mistake was made on her part, then why is she being castigated?  Please, ladies, we are all in the same boat, just using different oars to get down this river we were all put in.

    Linda 

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited May 2013

    Thanks, Linda.

    I just got home from my onc's office. I asked him re the ONJ and he told me that is more with the zometa than the aredia. 

    When his office called me over a month ago to mention his wanting me to take the aredia, it was to help prevent getting bone mets (nothing was said in relation to trip-'s) and to help strengthen my bones.

    Someone here, not in this thread, mentioned that trip-'s are 30% more likely to get bone mets - that's where I heard it.

    From now on, I am only listening to my doc. He is one of the top onkies in my state and I so trust him. 

    You are right, Linda, sometimes, when one types just as when we speak, words don't come out as we want them, they get switched around, etc., and instead of being hostile towards someone and assuming something, one ought to simply ask if that is what they meant. Reminds me of the psych game, where when one talks, the other repeats what was said to make sure it was heard correctly.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Let's look at the research. 

    Tuesday, April 21, 2009

    Zometa: Not Proven for Hormone-Negative Zometa (zoledronic acid) has been touted as a life-saving drug, based on research in the February New England Journal of Medicine.    And it looks like the drug has serious potential-for women with hormone-positive disease.  Some things for women with hormone-negative breast cancer, including triple negative, to consider:The women studied were all premenopausal who were hormone-positive and were given hormonal therapy-either tamoxifen or Arimidex-plus goserelin (Zoladex) to suppress ovarian function.None received adjuvant (after surgery) chemotherapy;The study found a 98 percent chance of survival in young women who were given ovarian suppression and hormone therapy drugs but did receive any chemotherapy.So this could be great news for a narrow group of women.  Unfortunately, this does not include those of us with hormone-negative disease.The Dr. Susan Love Research Foundation has a great analysis of this. Back to the drawing board, docs.  Find us a cure.

  • Shirlann
    Shirlann Member Posts: 3,302
    edited July 2009

    Hi Florida Lady!  So good to hear you on the site! 

    Gentle hugs, Shirlann

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Survival shortened when ER/PR negative breast cancer spreads to the brain

    24 Jan 2008

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    Two studies from Mayo Clinic's site in Jacksonville, Fla., of women whose breast cancer spread to their brain, have found that women whose tumours do not have oestrogen or progesterone receptors have the worst overall outcomes. Because of this, these patients should be treated aggressively after an initial diagnosis to help prevent such a metastasis, say the investigators, who presented their findings at the San Antonio Breast Cancer Symposium.

    Those cancers include so-called triple negative tumours - cancer that does not exhibit HER2 growth factors or oestrogen (ER) or progesterone receptors (PR) - as well as HER2 positive cancers that are also ER/PR negative, say Mayo investigators.
    This research is the first to look at differences in brain metastases and survival by different breast cancer subtypes. In one of the studies led by Stephanie Hines, M.D., investigators found that the median survival from diagnosis to death in women with triple negative tumours with brain metastases was 26 months, compared to 49 months in women with other types of breast cancer brain metastasis.

    The second study, led by Laura Vallow, M.D., looked only at HER2+ tumours that had spread to the brain, and concluded that median survival from initial diagnosis to death in patients with ER/PR- tumours was only 17.5 months, compared to 55 months for women with ER/PR+ cancer.

    "We need to be aware that this kind of cancer is high risk and we should do all that we can to prevent brain metastasis," says Dr. Hines. "For women with triple negative breast cancer, improvements in outcome will likely come when new treatments for this type of cancer are successfully developed."

    Targeted therapies are available for cancers that are ER/PR+ or HER2+ before they metastasize to the brain. Herceptin, which treats HER2+ cancer, is theorized to be too large to breach the blood-brain barrier, and patients who have triple negative or HER2+ ER/PR- breast cancer do not have targeted therapies. "What's needed, therefore, are treatments for HER2+ and triple negative tumours that can reach the brain, as well as treatments that are specifically targeted to treat triple negative breast cancer cells," Dr. Hines says.

    Metastatic breast cancer accounts for 20 percent to 30 percent of the 170,000 cases of brain metastases diagnosed annually, and as improvements in systemic therapy prolong survival, brain metastasis in breast cancer patients is becoming more evident, says Dr. Vallow. "These results suggest that more aggressive therapy in ER/PR- tumours may be warranted because patients with ER/PR- disease tend to develop brain metastasis even if the cancer has not spread anywhere else, and this metastasis develops sooner and survival is shorter compared to breast cancer that is ER/PR positive," she says.

    While the outcome looks worse for HER2+/ER/PR- tumours than for triple negative cancers, findings from the two studies cannot be matched against each other because the studies did not directly compare these two groups of patients against each other. "One compared triple negative cancers against all other subtypes, and the other compared HER2+/ER/PR+ cancers against HER2+/ER/PR- cancers," Dr. Hines says. "We didn't directly compare outcomes from triple negative tumours against HER2+ ER/PR- cancer."
    "For now, what we can say is that both the triple negative group and the HER2 + ER/PR- groups appear to have a poor outcome, which is unfortunate," she says.

    The studies looked at women treated for breast cancer at Mayo Clinic Jacksonville from 1993 to 2007 (Hines study) or from 1996 to 2006 (Vallow study) whose cancer spread to the brain.

    Dr. Hines found in a study of 103 patients that those with triple negative tumours developed systemic and brain metastasis sooner than patients with other types of breast cancer, and had significantly shorter survival overall. Specifically, investigators concluded that time from:

  • Nanalinda
    Nanalinda Member Posts: 826
    edited July 2009

    The only hostility I detected was the statement directed at Flalady... " proves one must always check out what one hears and learn all the facts before telling/straightening out others - such as assuming it's there doc giving the info."  I only questioned NanaOfTen because I recalled her stating in her previous post that the info came from her Dr.  I felt her statement was unkind and uncalled for.  I was not being hostile, just trying to clarify.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009
    Wei B, Wang J, Bourne P, Yang Q, Hicks D, Bu H, Tang P.

    West China Hospital, Sichuan University, Chengdu 610041, PR China.

    Bone is one of the most common sites of distant metastasis for breast carcinomas. In this study, our objective is to identify molecular markers and molecular subtypes that may predict patients at higher risk of developing bone metastasis. Immunohistochemical analysis with antibodies against estrogen receptor alpha, progesterone receptor, androgen receptor, Her2/neu, epidermal growth factor receptor, CK5/6, CK14, CK17, CK8, and CK18 was performed on representative sections of 21 breast carcinomas with bone metastasis and 94 cases without bone metastasis. The expression rates of receptors, subtype distributions (basal versus nonbasal) of 3 molecular classifications (cytokeratin, triple negative, and cytokeratin/triple negative), and 5 subtypes of cytokeratin/triple negative classification were compared between these 2 groups. We found that (1) the breast cancers with bone metastasis were associated with a significant percentage of estrogen receptor-positive/progesterone receptor-negative tumors compared with tumors without bone metastasis (38% versus 6%, P < .0001). (2) There was significant difference on estrogen receptor expression between high grade and non-high grade in tumors with or without bone metastasis (P = .0084 and 1.0000, respectively). (3) The breast cancers with bone metastasis were more likely to be estrogen receptor positive (85%) and androgen receptor positive (95%) compared with those without bone metastasis (59% and 74%, respectively, both P < .05). (4) There was no significant difference between tumors with or without bone metastasis in subtype distribution (basal versus nonbasal) among all 3 molecular classifications. (5) Luminal B carcinomas of cytokeratin/triple negative classification tended to be associated with bone metastasis but not to a statistically significant extent. ****In conclusion, bone metastasis is strongly associated with estrogen receptor-positive/progesterone receptor-negative tumors.

     Significant difference in estrogen receptor expression between high-grade and non-high-grade tumors with bone metastasis suggests that different panels of molecular markers should be used to predict bone metastasis in these 2 groups of tumors.

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited July 2009
  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    Triple Negative Breast Cancer: Making Sense of Estrogen, Progesterone and HER2 Receptor Status

    by  Kevin Knopf, MD
    Friday, April 04, 2008

    Most oncologists now are thinking of breast cancer as at least four diseases based on endocrine features - luminal A, luminal B, Her2 positive and the so called "triple negative" - breast cancers that express neither estrogen receptors, progesterone receptors nor Her2 receptors. These latter breast cancers, or "triple negative" breast cancers have a reputation (deservedly so) for being difficult to treat.

    Yet many oncologists, like myself, have dozens of patients with "triple negative" breast cancer who are cured. And many who are not. What is the difference?

    Well the therapeutic armamentarium is not as great with a triple negative breast cancer. Hormonal therapy (tamoxifen, aromatase inhibitors) does not work. The benefit we see with Herceptin (and a newer agent Tykerb) in combination with chemotherapy, is not available in either the curative (newly diagnosed) or metastatic setting.

    And yet many women are cured. There was a recent article in one of our oncology journals that I read; it was the fifth out of five articles that issue and not a high profile article, but it reinforced thinking about triple negative breast cancer.

    This was a study of many patients treated at MD Anderson Cancer Center in Houston with triple negative breast cancer. At this cancer center many women receive chemotherapy before surgery, or neoadjuvant chemotherapy, and thus the tumor can be examined to see what sort of response the cancer had to chemotherapy.

    *******The results? Those women whose cancers shrank from chemotherapy had a higher chance of cure than those women who didn't. Another finding which was probably confirmed, rather than new, was that those women who developed metastatic disease with triple negative breast cancer were more likely to develop metastases to internal organs (like the liver and lung) rather than the bone. And a third finding was that many women whose cancer did recur had a recurrence within the first three years after diagnosis.

    What is the take home message for our readers? I think the main message should be to keep fighting and to never lose hope - even though triple negative breast cancer is a tougher cancer to treat, if it responds nicely to chemotherapy then a survival advantage - and a good cure rate - will be seen.

    We don't have a way of "looking" for that response in the traditional adjuvant setting - chemotherapy given after surgery - so maybe it's best to assume that we are curing each patient with triple negative breast cancer for starters. And we continue to look for better chemotherapy agents and better ways of determining which agents are right, so that we can cure even more patients with triple negative breast cancer.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited July 2009

    I can not find one open or closed trial for Zometa and TN.  I only found trials were they were testing to control bone loss during tx. (2 trials)

  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited July 2009

    When I wrote proves one must always check out what one hears and learn all the facts before telling/straightening out others - such as assuming it's their doc giving them the info -   it was also directed to myself - when I hear or learn something re my treatment or cancer to ask my doc about it before I repeat it.

    Now, how was that hostile? I was hostile to myself?

    I joined this site to gain understanding/compassion from others going through similar situations. Several times when posting, and not just my posts but others I see while reading through threads, instead of getting a response that may have simply warranted a question to a post, too many times there is an angered response that is surprising! when all the responder had to do was ask a question to clarify what was written.

    We are all under stress dealing with this beast, and to add to it by petty bickering is just so sad.

  • ddlatt
    ddlatt Member Posts: 448
    edited July 2009

    my patient advocate at UCSF sent me this about zometa and TN. if you're interested, i can ask her to cite the specifica trials. there's no way UCSF med oncs would be recommending zometa to TN patients if there weren't substantial clinical trial evidence. we can all point to old data that suggests that zometa doesn't help, but the current thinking is that it does. 

    >>Because the trials with Zometa were done in ER+ and/or PR+ women to prevent bone loss while on an aromatase inhibitor, the data in triple negative women is not as large. The trial done with an oral bisphosphonate Clodronate was done with hormone negative and positive women and showed a survival advantage in both groups. Other smaller studies tracking stem cells in bone marrow have also had hormone positive and negative women and have also showed an advantage with Zometa. >>

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