TRIPLE POSITIVE GROUP

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Comments

  • chachamom
    chachamom Member Posts: 410

    Interesting discussion and article! Thanks everyone!

  • lago
    lago Member Posts: 11,653
    kayb  I agree. My understanding is you can't be a little pregnant (a little positive). Tongue out
  • sheila888
    sheila888 Member Posts: 9,611

    Chachamom...i was also 9 months post menapausal ...was told if it was more than a year maybe treatment would be different.

    I got 4DD A/C   4DD Taxol with Herceptin and continued for a year with Haerceptin.

    Had full radiation

    5 years of Femara which i was done March 2011.

    Now what is Ki67.......I wonder if they did that in 2005

    Yes this an interesting discussion...i'm still learning thanks to you.

    Didn't have oncotype or maybe I did but nobody said anything to me.........

    Surprised

  • omaz
    omaz Member Posts: 4,218

    Early on I asked my onc about whether the HER2 FISH 'score' was important and he said that postive is positive.  So the level is not as important as the positive/negative distinction.  That's what he said, though now that was a couple years ago and maybe things have changed.

  • lago
    lago Member Posts: 11,653

    Sheila Ki67 or MIB-1 is how fast the cells are dividing (they measure some protein that is created when the cells divide or something like that).

  • dancetrancer
    dancetrancer Member Posts: 2,461

    New article that may be of interest:

    Carpal Tunnel Syndrome and Musculoskeletal Symptoms in Postmenopausal Women With Early Breast Cancer Treated With Exemestane or Tamoxifen After 2-3 Years of Tamoxifen: A Retrospective Analysis of the Intergroup Exemestane Study 

    Interpretation: Occurrence of carpal tunnel syndrome is higher in patients with breast cancer given exemestane than in those treated with tamoxifen, and surgical release might be necessary in most cases. Development of musculoskeletal symptoms in the first 6 months of treatment is not an independent biomarker of improved disease outcome. Further investigation is warranted into the relation between treatment-emergent musculoskeletal symptoms and clinical outcome in patients with breast cancer receiving hormonal therapy. 

  • chachamom
    chachamom Member Posts: 410

    Interesting article, thanks! I thought they only used the aromatase endocrine drugs for post meapausal women. I was also told they don't do the Ki67 or oncotype if you're already typed as HER2+........

    But it appears to vary quite a bit depending on ??? No black and white.....that's what is so frustrating!

  • dancetrancer
    dancetrancer Member Posts: 2,461

    Kay - I don't - I do have institutional access to many articles, but I can't get this one to download.  Perhaps your OT might be able to get access?  Also, some cancer treatment centers have a library service that will get you full copies of articles for free.  

    Chacha - I'm still REALLY confused about all of the hormone type of drugs, 'cause I'm not there yet (too many other things to research!).   I'm sure some of the ladies on here can clarify for us.  Right now I'm learning bits and pieces.   

  • omaz
    omaz Member Posts: 4,218
    kayb - I wonder about the PR in relation to the luminal type - Have you read anything about that? I haven't seen very much discussion about the significance of PR positivity.  
  • shore1
    shore1 Member Posts: 591

    I am reading mixed things on-line about effexor causing weight gain. In a dose for treatment of depression. Has anyone found that it does cause weight gain?

  • lago
    lago Member Posts: 11,653

    I wonder why the study is with Exemestane (Aromasin) and not some of the other AIs (Anastrozole/Armidex or Letrozole/Femera). Aromasin is a little different from the other 2. I wonder if that is what is causing the increase in Carpal Tunnel?

    I too could not get the entire article. Just bases this on what was posted

  • Kay_G
    Kay_G Member Posts: 1,914

    Interesting, my coworker had breast cancer and about six months after starting on an AI she got carpal tunnel. I'm not sure which AI she was on.



    I just started celexa a week ago for the symptoms from tamoxifen. Not sure how close it is to Effexor. But I am hungrier and have already gained a couple of pounds. I lost 35 pounds since diagnosis so I am okay with it now, but don't want to keep going with it.

  • Hindsfeet
    Hindsfeet Member Posts: 675

    Kay could you put the article in layman's terms. It was slightly confusing but interesting as to which I would like to know exactly what it means in regard to hormone and the HER2+

    For myself my estrogen was 96+...Pr30+ ... highly HER2+++ and high proliferation rate. I had nodes tested in each quantrant...a shot in each quatrant taking the node it first went to. I'm node negative.

  • pejkug3
    pejkug3 Member Posts: 277

    What constitutes "Highly ER+"?

    I was ER+ - 80% and PR+ - 40%.

    Is that high?  I would say yes, but I see a lot of 90%+ posts.

  • lago
    lago Member Posts: 11,653

    pejkug3 you are high ER+

    BTW has anyone seen this: 
    Large Review Study Confirms Herceptin's Benefits 

  • moni731
    moni731 Member Posts: 212

    Hello everyone! Long time since my last post. I am wondering how many of you are dx'd with reccurrent BC. I've tried to discern it from the stats, but only can find one. D/t a lot of problems with every drug given to me, I had to pass on rads and refused any AI's. My MO says my reccurrence percent would be about 35. Never been lucky with odds, so I feel like it is only a matter of time. My ER+ percent was>95, PR>75, and Her2+ highly. Allergic to Herceptin. Anyone else in this boat? All of this new stuff is very interesting. A lot of progress in even one year! Best wishes to everyone unlucky enough to find themselves here.

  • lago
    lago Member Posts: 11,653
    Moni you didn't even want to try the AI? Sounds like you've been through a lot so I can understand your reluctance but remember you can always quit the AI. I know I was scared to take it but other then some minor joint stiffness I'm doing fine… like 60 squats/30 lunges and more every other day fine. Maybe the AI is your lucky drug. I mean being that highly positive I would think this is more important for you than for me.
  • omaz
    omaz Member Posts: 4,218
    Hi moni!  Did you try tamoxifen?
  • moni731
    moni731 Member Posts: 212

    Oh yeah, stage changed to 2b also.

    Hi Lago, thanks for the response. No, didn't even want to attempt it. Spent 8 mo in hospital last year. Had life threatening reactions to everything. Thinking I do not want to go through anything else.

  • Kay_G
    Kay_G Member Posts: 1,914

    (((((moni)))))

  • Kitchenella
    Kitchenella Member Posts: 88

    Thanks for all the information. I'm not good a research.  Hugs to all you who do such a good job.

  • Hindsfeet
    Hindsfeet Member Posts: 675

    Kayb...sorry, I misunderstood. In light of the article you all were discussing I wondered with being highly triple positive how it related or effected me.. I know my estrogen, grade and HER2+++ are all high.. My oncologist made it very clear to me that Herceptin was my best bet. She also recommended chemo and tamoxifen. Tamoxifen instead of Al's due to a low bone density test. I all allergtic to fosamax and similiar meds. Unfortunately, with the only two treatments of Herceptin my EF dropped 15 points. My oncologist is having my heart checked every 6 weeks, and if it goes below what it is now after my fourth infusion, she's taking me off of it. I am seeing a cardio specialist. Since just 2 infusions I' now have PVC"s where I feel my heart pumping irregularly.... I'm at higher risk now for a stroke so Tamoxifen is out of the question.

    If I am to have a recurrence I may not be able even if I wanted to do is conventional medicine. I just hope the four herceptin infusions will have done the trick or I find an alternative way to fight cancer...hopefully never have it again, although I know I'm at higher risk for a recurrence. For me is which risk can you best live with treatment, or heart failure.

  • dancetrancer
    dancetrancer Member Posts: 2,461

    Lago, yes I did see bco's summary of the Cochrane review on Herceptin.  I found it interesting how their interpretation focused on Herceptin's benefits, whereas the article I presented focused on the risks of Herceptin.  Once again it goes to show that the authors of an article can change the slant/emphasis depending on what they feel is most important.  BCO of course feels cancer treatment is most important.  In the article I presented, one of the people interviewed was a cardiologist.  So, of course, he was most concerned at pointing out the heart risks.  It is up to us to read between the lines and make informed decisions looking at all the facts.  That's not always an easy thing to do when it is your life, and you are emotional!  LOL!  

    I'm really glad to have seen both articles.  The one that focused on Herceptin's risks has made me more aware that it is a bigger issue for me to pay attention to.  As a result, I have had a discussion with my doctor, and we will be doing additional bloodwork (troponin, proBPN) before each infusion to try and catch any possible heart damage at an earlier time.  Many times by the time an echo shows a drop, a fairly large amount of damage has already occured.  Yes, the risk of heart damage overall is low, and this damage can be reversible, but the truth of the matter is - it isn't always.  Those are risks we must all go into with eyes wide open...not to make us put our tail between our legs and run screaming away from Herceptin...because obviously it is a lifesaver from cancer...but to make ourselves more educated about the risks we are taking and what we can do, if anything, to minimize them and to monitor for them more closely so that we can take appropriate action as early as possible if heart damage does occur.

    I have been posting details of my research on this over at the Herceptin heart attack thread, for anyone who is interested.   

  • dancetrancer
    dancetrancer Member Posts: 2,461

    moni - life threatening reactions to everything?  8 months in the hospital?  Girl, you have been THROUGH it.  I am so sorry!  Huge hugs going out to you.  

  • Kay_G
    Kay_G Member Posts: 1,914

    ((((evebarry)))))  wow, some of us have really had it difficult.  I was allergic to taxol and have developed a weakened heart from herceptin.  I am also worried what my options would be if I got a recurrence.  I've only been on tamoxifen for 5 months, but it seems to be pushing my liver function tests up.  Hopefully we won't have to cross that bridge.

  • lago
    lago Member Posts: 11,653
    DanceT believe it or not when I first met my onc she asked me what I was most concerned about. I said my heart and my bones. (She ordered a bone density test after discussing my family history and taking a look at my small Caucasian frame as well as the MUGA). It is a real concern that shouldn't be ignored.
  • dancetrancer
    dancetrancer Member Posts: 2,461

    lago - I'm going to be asking for a bone scan, too, eventually...I'm wearing my onc out with my requests right now...LOL...gotta pick my battles!  Ha, ha, ha!  I just read an article that says premenopausal women who go through chemo have a significantly higher risk of bone loss.  I need to add calcium citrate to my long list of things to take.  Good gracious! 

  • lago
    lago Member Posts: 11,653

    Not a bone scan, a bone density scan. 2 different things. I was slightly osteopenic. Onc put me on Calcium (was already on D because my PCF caught my extremely low D months before diagnosis. Very typical of breast cancer women having low D).

    Premenopausal women may have more bone loss if they are younger because they are depleated of estrogen at a younger age. In my case I was peri and 49 at diagnosis. I'm betting it didn't make a huge difference. I think the slight osteopenia was from all that diet Dr. Pepper I had been drinking since 1983. I quit that the day I started chemo. Now I have maybe 6 cans a year.

  • dancetrancer
    dancetrancer Member Posts: 2,461

    Ooops, absolutely right lago!  And yes, I'm already on 4000 mg VitaminD per day per my onc.  How much calcium are you taking?  

    D*mn that Dr. Pepper.   I love it and Mountain Dew.  Gave it up, too, though. Smile 

    I've treated WAY too many women with osteoporotic fractures.  I know I should have been taking Calcium for a long time now, just been too lazy to stick with it.  Sometimes we just don't take our own advice.  Dumb, dumb, dumb.  I know better!!!  

  • lago
    lago Member Posts: 11,653

    My onc has me on 1200 daily (600 with breakfast & dinner). That comes with 400 IU D but I also take 1000 IU D3, and my multi vitamin has 400 IU D too. My D was in the single digits. Now it's  just above high normal at 79 the last time it was tested. (normal is 18-72).

    But do check with your doctor about the right amount of calcium. Too much calcium can have cardiac issues too.