Another Poll for triple positives???

Options
mmm5
mmm5 Member Posts: 1,470
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi I had a 3 month check with ONC today and really delved into hormonal treatment for Her2 and my age etc (42 when dxed). I am 10 months past chemo, no period and I was treated as if chemo put me into menopause. My Estradiol jumped around a lot and they are watching it for next 30 days. I started with Arimidex had too many issues so they put me on Femara which was not too bad but my recent Estradiol was 21 borderline. So.. they are retesting me in 30 days to make decision. Both Onc's are against tamox with Her2 for reasons discussed on these boards. (both reasons.)

My question is for triple positives what was your ER percentage, mine was only 18 percent it seems quite low and do I really need to worry about all of this?  My Oncs say a positive result is a positive result, then they go on to say that the Herceptin trumps all and I will probably fine either way....who knows....!

For triple positives can you share your story, your percentage etc? I always learn something here.

· Share on FacebookShare on Twitter

Comments

  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    I don't even know my %!!!..I asked my onc and he said on my path it wasn't noted..just that I was ER+.

    My onc said the same thing yours did...positive is positive, whether its low or high.

     Did you do that CY2PD test (tamox metabolizer). The news to date..is that Her2 gals who metabolize tamoxifen well do well in general as far as recurrence goes. The AI's are harsh.Tamox might be your pot of gold as far as se's go...you never know. Smile

    · Share on FacebookShare on Twitter
  • lexislove
    lexislove Member Posts: 2,645
    edited August 2009

    Where's orange?....she'll set things straight..lol

    · Share on FacebookShare on Twitter
  • REKoz
    REKoz Member Posts: 590
    edited August 2009

    I am a triple positive but I don't think I can be of much help because I was nowhere near borderline. 90% on both er and pr. Post menopausal so I just started Aromison. So far, so good.

    What has me stumped is that the word estradiol has never even been mentioned by my Onc. Could that be because the percentage is so high, they don't even do that test on me? Or should I be pushing for it anyway? I was thinking maybe it was like the Oncotype test. I never had that done because being HER2 triple pos, chemo was a given.

    · Share on FacebookShare on Twitter
  • Beach
    Beach Member Posts: 127
    edited August 2009

    I'm a triple positive with my ER at 80%, PR at 40-70% and HER2 over 90%.  I just finished chemo at the end of June and have not had a period since early June, so I'm assuming I'm in or heading into menopause.  My onc is starting me on Tamox without having done any tests (that I'm aware of).  She has not been around on my last couple of Herceptin treatments, so a few days ago I asked my pharmacist about the CY2PD test and he said that you need to be on Tamox for a month or two before it can be done......makes sense I guess Undecided.  I have no idea what my Estradiol is......when do they usually start monitoring this??  Wonder why my onc hasn't talked to me about any of this......hmmm??!! 

    Thank goodness for this forum or I would be in the dark on much of this disease!

    · Share on FacebookShare on Twitter
  • mmm5
    mmm5 Member Posts: 1,470
    edited August 2009

    Hi all

    Regarding the Estradiol, this and FSH/LH are two very simple blood tests you can have done to see if you are truly menopausal and if there is still estrogen floating about in your body. I have them done routinely because when I was dxed I was very premenopausal having normal periods. For my age (42) approx 50% will stay in menopause after chemo the others get periods back. They monitor me to see where I am at, as the AI's don't work if you are not postmenopausal. In fact he stated they can be bad for you if you are truly not menopausal.

    Hence I am in the middle of nowhere on an island trying to figure out my hormonal course, my ER is borderline low end of percentage and I am remembereing a gal on these boards that was at 20% who was treated as negative.

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited August 2009

    Hi All,

    I only have a few minutes so I'll weigh in on the Er+/Her2+ stuff later on.

    I just had to pipe in here for Beach.  Beach your pharmacist is absolutely wrong!!!  He/She is assuming that the test is some sort of blood test that looks for drug levels in plasma (this is how most testing for pharmaceuticals is done).  But the test for tamox metabolism is not like that.  It tests your actual genetic make-up to determine if your liver will metabolize tamox correctly.  You do not need to be on the drug to take the test.

    As a pharmacist, I feel shame for our profession that someone would not bother to research and find the correct answer to your question, or simply say "I don't know, ask your doctor." rather than risk providing incorrect information. Frown

    Bottom line for Beach - please consider getting the CYP2D6 test done.  If poor metabolizers (7% of caucasian and african american population), Her2+ do VERY poorly on tamox and I want to keep all my Her2+ sisters around.  On the other hand, overall as a group we do very well (95% 3 year DFS for node negative, hormone receptor positive in HERA trial.) Smile

    · Share on FacebookShare on Twitter
  • coonie
    coonie Member Posts: 7,618
    edited August 2009

    Another Triple+ here..Finished Herceptin last January and feeling fine. Been on arimidex a year in May. Had ovaries removed when I had bilateral mastectomy. My numbers are ER-57%; PR-93%; Ki67-59%; HER2NEU by FISH - 4.0.

    I'm not quite sure how the 4.0 compares to a percentage for the HER2+. Anybody else understand that?

    Thanks.

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited August 2009

    I'm not triple positive, only double positive, but I think the issue of hormonal treatment is the same for me.

    My ER was in a category labeled "25 to 75%" positive, what ever that means.  My PR was  less than 5% in one sample and none in the other.  Before chemo, I was totally premenopausal (I was 46), now I am still chemopausal and will probably stay that way.  I will stay on tamox  - last time my husband talked to Mayo onc (he talks to him more than I do), he emphasized the importance of staying on it.  Even if local onc wants me to switch to an AI when I am confirmed menopausal, I will not due to quality of life issues.  Being in chemopause is bad enough, I don't need to age any faster. 

    For me, bottom line for the tamox/her2 issue are the actual results in humans. Whatever happens in a petri dish is relevant for developing theories, but not relevant to treating patients if there are actual results of well conducted clinical studies in humans to use as a guide.  

    In HERA, 80% of ER+ took tamox, not an AI, and the results were very good even though chemo was administered in a non-optimal fashion.  In both HERA and the Joint Analysis subgroup analysis, ER positive did better than ER negative.  This wouldn't be so if tamox was bad for most of us.  In BCIRG006, the ER+/ER- results were not broken out separately.

    However, I absolutely respect other views.  Each of us has to feel comfortable with our  treatment. 

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited August 2009

    Beach - your onc doesn't measure your estrogen level because it doesn't matter what the level is if you are on tamox.  Tamox (once converted to endoxifen by the CYP2D6 enzyme) blocks the ability of estrogen to stimulate the growth of breast cancer.  Estrogen levels are important for women on an AI, since there is nothing to block the effect of estrogen, an AI blocks the production of estrogen.

    However, as I have preached all over these boards, it is very important for Her2+ women to have their CYP2D6 metabolizer checked.  For explanation, see the thread titled "Important for Her2+ on Tamoxifen. 

    · Share on FacebookShare on Twitter
  • helena67
    helena67 Member Posts: 357
    edited August 2009

    I totally agree with orange1 (as I always do!!) that taking the CYP2D6 test is important for those who are on tamoxifen. And it is also important to be aware of possible drug interactions with drugs that inhibit the CYP2D6 enzyme (many antidepressants, for example).

     I am on an AI myself after removing my ovaries (which is related to a history of ovarian cancer in my family). Thus, the AI was an obvious choice for me. But I have had the same ruminations and questions about Tamox and HER2. I am actually doing just fine on Femara, have been taking it for 6 months now and don't notice that much regarding side effects. I find it very doable. So, I think everyone has a different experience.

    The most important is that we TAKE the hormone therapy and that we KEEP taking it over many years! And that we take the BEST possible treatment.

    Talk to your docs!!

    Smile

    -Helena. 

    · Share on FacebookShare on Twitter
  • Beach
    Beach Member Posts: 127
    edited August 2009

    mmm5--I should have mentioned that I am 45 and was no where near menopause when first dxed either.  Like you, chemo forced me into menopause so I guess the waiting game begins to see if I stay here.  My onc said the same thing as yours about AI's being bad for you if you are not truly menopausal or post-menopausal.  Because of this, how come they started you on AI's instead of Tamox while they are trying to figure out your status?  Is it because you are a "poor metabolizer" of Tamox?  I'm just trying to understand all of this so I can be better armed Wink!! 

    Orange1--Thanks for all of the info you provided......lately I find myself spinning around in circles because of all of the conflicting info I'm getting from various members of my health team.  I have been following the thread you mentioned and that's how I learned about the CYP2D6 test.  It's maddening that this has not been brought up by my medical team and now to find out that my pharmacist has given me the wrong info..............sometimes it feel like I'm just a number to them Yell.  I will ask my onc about this on my next Herceptin tx........apparently she will actually be in the office this time. 

    I'll say it again......thank goodness for this forum as we need to be our own advocates.....the info available here is invaluable!! 

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited August 2009

    Hi everybody,

    I was diagnosed back when the trastuzumab trial results weren't yet out and not in any of the trials, and never have had trastuzumab. There are differing opinions about tamoxifen and I'm still listening but currently still on the side of the fence that would not recommend tamoxifen for HER2's.

    My percentages were ER 50%, PR 95%.  

    · Share on FacebookShare on Twitter
  • rosesinwinter
    rosesinwinter Member Posts: 70
    edited August 2009

    Wow, this discussion answered a few questions for me.  I finshed TCH chemo last April for fairly aggressive stage III IDC. My course of Tamoxifen was started in June, 2008 after I finished radiation. My oncologist told me at the time that I would be on tamoxifen for 2 years and then an A.I. for 3 years if I was menopausal.  The tamoxifen seemed to cause mood changes/depression so we rev-visited this whole issue in July but testing revealed that I was still pre-menopausal and had to stay on tamoxifen.  Interestingly enough, I had a full-blown menstrual period for the first time in about 18 months last week.  It was very heavy and lasted my usual 5 days. I had really, really assumed that I was not going to have ANY more menstrual periods in my lifetime. SIGH!!! BTW, I was 48 yrs old when diagnosed and am 50 now.  My oncologist practices at a NCI Breast Cancer Center; she and her partners have decided that the CYP2D6 test is "not really ready for prime time yet".  They follow oncology practice guidelines closely and have guided me through some serious complications over the past 2 years.

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited August 2009

    REKoz -

    I think the reason they don't measure your estradiol is because if you are clearly post menopausal, it is assumed your levels are very low

    · Share on FacebookShare on Twitter
  • carcharm
    carcharm Member Posts: 486
    edited August 2009

    Hi, Just wondering if there are any Stage 1 bc surviors that are in a clinical trial to try to ward off bone mets? Here's a synopsis of the trial:

    Zoledronate, (Zometa)  clodronate, or ibandronate may delay or prevent bone metastases in patients with nonmetastatic breast cancer. It is not yet known whether zoledronate is more effective than clodronate or ibandronate in treating breast cancer.

    I haven't seen the onc yet but found this trial at a local hospital. The side effects with any of the biophosphonates is jaw rot. There are so many links in this website that I am sure someone has covered this but my eyes are crossing searing for it!!

    Thanks 

    · Share on FacebookShare on Twitter
  • threeteens
    threeteens Member Posts: 22
    edited August 2009

    I am triple positive.  My ER and PR are both above 90%, and I'm not sure about the HER2 expression %.  I finished chemo at the end of May and have only been taking Herceptin although it is weekly.  At one point it was questionable  whether or not I could stay on the treatment and only at that time did my onc mention tamoxifen.  I will ask at my next visit about the combo of these of treatments, why and/or why not.  I see him next Tuesday 8/11.  I'll get back to you if you haven't found out by then.

    · Share on FacebookShare on Twitter
  • Chelee
    Chelee Member Posts: 513
    edited August 2009

    My onc was totally against me being on Tamoxifin since I'm Her2/neu 3+++, Er & Pr positive.  When the topic first came up about taking an AI or Tamoxifen...I had went up for a 2nd opinion at another cancer center. (I was still peri-meno at that time)   The 2nd opinion onc disagreed with my onc and said I should be on Tamoxifin verses Femara.

    So I told my onc what the 2nd opinion onc said...and my oncologist very abruptly said real loud, "Do you want your cancer to come back"!    Wow, she actually startled me that day the way she answered me.  That was so unlike her...but she is 100% against me taking Tamoxifen.  So after that I did more research and talked to some other Her2 woman and decided if I took anything it would be an AI.   After what I was hearing from my onc and the others Tamoxifen worries me.  So many difficult decisions once dx...then you have to hope you made the right choice for yourself. 

    Chelee

    · Share on FacebookShare on Twitter
  • mmm5
    mmm5 Member Posts: 1,470
    edited August 2009

    So Chelee Are you on an AI then?

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited August 2009

    Its too bad we're not all in a study so the women who come after us could make decisions based on absolutely concrete data.  I guess since each onc feels so strongly, they wouldn't agree to allow their patients to participate in such a study because they would feel its unethical.  Maybe someday our outcomes will be included in a retrospective study.

    · Share on FacebookShare on Twitter
  • Chelee
    Chelee Member Posts: 513
    edited September 2009

    Hi mmm5,  I apologize that I did not see your question to before now.   Some how I missed it.  I still like to blame everything on chemo brain.  :)  You asked if I was on a AI?  I have a VERY LONG story so I will TRY to make it SHORT.

    I'm a very unusal case as all my doctors have told me.  My FSH & Estradiol stayed in peri-meno range even when I was on zoladex.  I got 2nd opinions...we did everything.  Finally I needed a cyst on my ovary removed so I requested a ooph since I'm Her2/neu and wanted to take an AI.  After my ooph we kept checking my FSH & Estradiol and it NEVER dropped.  :(  It took a year and 7 months AFTER my ooph before I started showing to be in menopausal range. 

    Since I had not been covered the entire time with an AI or Tamoxifen...I at present have not started on Femara.  I have scoliosis which is severe curvature of the spine...so I am VERY concerned about my bones/back.  I have a total "S" curve in my spine.  So I'm afraid of what the Femara will do to my bones...espescially since they cannot give me any guarantees it will stop a recurrance.  They have no way of knowing who it will benefit...and I've been without an AI since my surgery which was 1-3-06. 

     I still wonder if I should start on Femara or not.  It's only been about 5 months since I've been in the menopausal range.  I don't know what to do??!   I want to do everything I can to keep "it" away...but I am scared to death what it will do to my bones...my scoliosis is really bad.  All these decisions are so hard...I see so many that are no doubt helped by AI's...but yet so many recur even when they do everthing right.  But for now...no...I am not on an AI or Tamoxifen...but that could change any time because its always on my mind.  (I do worry!)

    Chelee

    · Share on FacebookShare on Twitter
  • LouLou40
    LouLou40 Member Posts: 180
    edited November 2009

    Hello

    I'm only new here and have found this post very interesting and informative.

    My ER was 40%, PR 20%

    I have recently finished Chemo 4xAC and 12 weekly Taxol and now having 6 weeks of radiation - WLE not Mastectomy.

    My Onc hasn't discussed hormonal treatment as yet, and I was assuming that I would be put on Tamoxifen as I'm 40. I feel so much more informed after reading this and will ask for the blood test.

    Jackie

    · Share on FacebookShare on Twitter

Categories