Provocative Study for Us ER positives

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weesa
weesa Member Posts: 707
edited June 2014 in Stage III Breast Cancer

A persistent theme in this forum has always been Aromatase Inhibitors, how long to take them, how to deal with se's, are they creating worse health problems than they are worth? These issues are particularly acute for us stage three'ers.

Here's an interesting study from the March 2008  issue of "Cancer Epidemiology, Biomarkers and Prevention":  153 women, perimenopausal and postmenopausal, of 3,088 participants in the Women's Healthy Eating and  Living Study with early stage breast cancer, had recurrences. They were matched with 153 women whose cancer did not return. Women with recurrences had twice the estradiol of those 153 who remained disease free: 10.8 pg/ml for the recurrence-free women, versus an average of 22.7 pg/ml for the recurrence group. Women were followed for seven years from the point of diagnosis onward.

It is tricky to get a reliable serum estradiol figure, for the pujrpose of seeing where you fall in this study.The lab must do a sensitive assay. There are some gross lab tests which were actually designed to determine if a woman were menopausal or not and they are not highly accurate at the lower numbers. Make sure the lab analyzing your blood knows this is for breast cancer recurrence purposes and that a sensitive assay must be employed.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited October 2011

    Interesting....thanks for posting.

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  • diana50
    diana50 Member Posts: 2,134
    edited October 2011

    thanks weesa*

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  • comingtoterms
    comingtoterms Member Posts: 421
    edited October 2011

    My estrogen levels were tested two years ago and indicated that I was through menopause. I have continued to get my period since then. I don't think hormone tests can be truly accurate. They vary too much, moment to moment, day to day. Tammy

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  • everyminute
    everyminute Member Posts: 1,805
    edited October 2011

    This is one of the reasons I was so adamant about having a hysterectomy at diagnosis. I just rather get levels as low as possible.  It is also why I keep body fat low and exercise like a fiend.  Here's hoping it works!

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited October 2011

    I am with you on the exercise Mary, although don't do as much as you do.  On top of the estroidal implications, there are a whole lot of other things I don't want that are preventable by exercise.

    Heart disease, Type 2 diabetes, and weak bones are a few I can think of.  Not to mention that exercise keeps your brain sharp, skin glowing, mood great, and muscles strong.

    In fact, the only downside I can think of is that hard to resist clothes when they look great on.

    I will be interested too in learning whether the exercise interventions being done at Yale (Melinda Irwin) make it easier for women to tolerate AI therapy.  I have minimal side effects.

    Thanks again for sharing Weesa. - Claire

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  • tlundy
    tlundy Member Posts: 142
    edited October 2011

    Thanks for sharing Weesa!

    My onc did assay before putting me on Lupron/Femara instead of Tamoxifen.  He never mentioned doing this on a periodic basis though - wonder if I should ask for one.  Haven't had a period since I started chemo, and they do ask about this at each checkup.  I am also considering a hysterectomy, but this isn't fool proof since we still manage to create estrogen from body fat  (guess this is where the exercise come into play) and adrenal glands - sigh.

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  • weesa
    weesa Member Posts: 707
    edited October 2011

    I don't get my estradiol checked frequently anymore, but when I was switching around between Arimidex, Femara and Aromasin I did check after a month on each, and the results were similar for Femara and Arimidex--under 4mg/dl. With Aromasin I was very high, (24!) and my onc concluded I wasn't metabolizing it. Without the estradiol test I would have gone on happily with the Aromasin, because it gave me absolutely no se's. Perhaps those of us having few se's while taking AI's should get theirs checked.My onc was always pleased to hear about my misery--hot flashes and joint problems--when taking the AI's.

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  • slousha
    slousha Member Posts: 312
    edited October 2011

    Hi dear ladies,

    I wonder seeing the ONCO's prescribing AI's for so long period without testing the actual state of hormones.

    To read at BCO: that women who experienced joint pain while taking hormonal therapy medicine were less likely to have the breast cancer come back (recur),  I was thinking of ladies without SE's and about their recurrences. Is this a good or a bad sign? My ONCO's reaction to complains about my suffering was: "It's working" and he was so pleased with. Well for him to say!

    Many thinks about AI's should be unknown yet!

    Stand by!

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  • Husband11
    Husband11 Member Posts: 2,264
    edited October 2011

    Do you know if these perimenopausal women and post menopausal women in the study were all being treated exclusively with aromatase inhibitors?  If so, lowering of estradiol is the sole mode of action of an aromatase inhibitor.  If they were on tamoxifen, then its a different story, in the event estadiol levels also come into play in determining rate of recurance.  I've always wondered why combining tamoxifen and an AI in postmenopausal women wouldn't have some slight additive effect, or at least a two prong approach should one not be effective.

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  • Pure
    Pure Member Posts: 1,796
    edited October 2011

    You definitely don't need this test in my opinion if you had ovaries out.Because you do not have your ovaries and are on an an Al you probably don't have estrogen to measure.

     At the time this study was done the AIs were not used and all the women took Tamoxifen. Tamoxifen only blocks the receptor not the production of estradiol like an AI does. These women also had there ovaries. The current thought especially in pre menopausal and peri menopausal women is that they need to stay on some type on hormone therapy much longer....10 years or longer. Paul Gnoss at Harvard/Mass general has done great research on this.

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  • weesa
    weesa Member Posts: 707
    edited October 2011

    Timothy, good question. This was a study to see if estradiol concentrations in the blood could be linked to cancer recurrence.The researchers were not looking to evaluate treatment effects. Since the women were followed for 7 years we can probably safely assume many of those who recurred and those who did not recur were or had been taking taxmoxifen or an AI.

    The researchers also looked to see if there was a link between concentrations of testosterone and sex hormone binding globulin and there does not appear to be a statistical difference between the two groups--those who breast cancer recurred and a randomly selected group of women from the non recurrence group.

    This retrospective study caught my eye because of its simplicity--there are not a lot of variables.

    And their one finding is a strong one, not due to random chance.

    Perhaps we can think that because all were enrolled in the Women's Healthy Eating and Living Study that they were conscious of exercise and healthy eating.

    And finally, this study was done by some responsible institutions like the University of California at San Diego, so I assume all 300 plus women in the study had their estradiol levels determined by the same lab or labs with the same technique.

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  • weesa
    weesa Member Posts: 707
    edited October 2011

    Pure- Not sure I understand your reasoning here--this study was done in 2008. Aromatase inhibitors have been around for 20 years. How do you know "these women all had their ovaries?"

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  • MJLToday
    MJLToday Member Posts: 2,068
    edited October 2011

    Pure, I will tell you an anecdote here.  I've had both my ovaries out, and was having my estradiol measured as a preliminary to be included in a study for "post menopausal women".  My estradiol was in the 40s, but the accepted me into the study anyway because I met the rest of the requirements ( no periods for months/years, ovaries surgically removed, etc.) so having your ovaries out does not guarantee a minimal estradiol level. 

     I sometimes wonder if that was why that study did not work for me, nor did any of the pure AIs -- I was on Aromasin with Faslodex which is not a pure AI as a combo that worked for me for a few months.  I'm sure my body fat has something to do with this, though it's really not that high.  

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  • diana50
    diana50 Member Posts: 2,134
    edited October 2011

    i saw my onc yesterday; my estradoil level is 30.  i have been off the arimidex for 2 years. 

    my ovaries are gone; i am 59 , no fat on my body and i cycle 130 miles a week.

    i discussed with my doc about how high the level was and she said she wouldn't recommend that i start taking any more drugs to lower the estrogen level.  (even tho i am estrogen +) so i said to her; then the hypothois is that the surgery, chemo, rads and the five and half years of the arimidex did its job and she said yes.  

    i actually have done my reading and thanks weesa for the info on this post.  i decided before i even saw my doc yesterday that i didn't want to take any drugs to bring the estrogen level down.  my SE included bone loss, high cholestrol and high blood pressure.  i am off all the cardo drugs because everything returned to normal after i went off the arimidex.  additionally, i had four broken ribs during my arimdex treatment. they healed after i went off the arimidex/fosamax.

    she is checking my tumor marker in january as it is starting to elevate but still in normal range.

     i feel good about the appt .  guess i will just keep cycling and doing what i have been doing.  so far so good; it will be 10 years in feb.

    Cool diana

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited October 2011

    Congrats Diana and glad your appt went good.  I have an appt tomorrow and I'm going to ask about having my ER levels checked, it's never been done.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited October 2011

    I don't remember the last time I had hormone levels drawn, but its been a few years....I'm been off the AI's for 1 1/2 years....and I'm not sure I want to know levels as I don't want to take AI's ever again...QOL is so much better off them than on...and I tried them all and endured 3 1/2 years of misery.....at my last onc visit, my tumor markers went up a little but were still well WNL...My next appt is in February 2012 which is 6 years since Dx....I'll worry then about the numbers if they rise again....my onc does labs right before appt (always has) and I get the results about one week later...I'm sure if there is a problem I'll hear sooner....I had my ovaries/tubes removed 5 years ago.....still have night sweats, hot flashes, but I think overall my core body temp is just elevated.....I'm 55 and was perimenopausal at time of Dx....waiting to get cold again!!!!

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  • everyminute
    everyminute Member Posts: 1,805
    edited October 2011

    I had my check up yesterday - my onc is running my numbers.  I have never had them run.

    I have had a hysterectomy and run and exercise daily - my body fat is low and I am on arimidex.  If my numbers are up, I almost would consider going back to tamoxifen since it is my understanding that that BLOCKS estrogen.  But I will wait for blood work to put too much thought into my answer. 

    My onc actually brought metformin up to me - I was going to let it go - she said she has been speaking to Dana Farber and is interested just not there yet.  She is still worried about side effects and blood sugar in someone with normal readings.  Said maybe she would give it to me and have me test regularly to see when I am with exercise, normal activities etc - but wants to think about it some more and let more studies come out.

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  • everyminute
    everyminute Member Posts: 1,805
    edited October 2011

    came back - 22.4/  

    Not sure if that was a sensitive assay or not.  Will wait for the doc to call - I will ask about sensitive assay.

    I am currently a size 2/4 at 132 lbs and 5'6" - I dont eat/drink much dairy (milk in coffee, one greek yogurt a day and occassional - sometimes more than occassional - ice cream).  I try to eat organic as much as possible.  I dont drink and exercise daily.

    So to possibly lower estrogen -

    I could cut out the ice cream (keep the greek yogurt since is a good part of my protein)

    I could try to lower my body fat - my scale says I am at 25 % which is "acceptable" but not low.  I am going to increase the strength training and see if I can lower that number

    I will try to do more organic

    I dont think there is anything else I can do. Maybe I do need to get religious about this and cut out all sugar and non organics...

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  • karen1956
    karen1956 Member Posts: 6,503
    edited October 2011

    Mary.....I don't know the nunber so can't comment....but I will on your comments on food....you only live once....we have to have some extravagances......indulge yourself once in a while on the treat foods....you eat healthy, you exercise (more than exercise) and live an overall healthy life!!!!  Pat yourself on the back for that.....for me, I refuse to give up everything....I enjoy my red wine...I don't smoke, don't drink anything with caffeine, but salty foods have become my weakness....I basically eat healthy.....my weight is up a bit....close to 130 and I'm 5'4".....I would prefer to weigh 120 but have not been motivated enough to loose it.....if I gave up snacking and increased my walking the weight would come off...its emotional eating and late night eating....

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  • slousha
    slousha Member Posts: 312
    edited November 2011

    Ladies,

    I read about a research statement: Survival in Stage IV in connection as for BIM.

    The best for patients 25-30, after that 18,5-25, then over 30 and the worse for less as 18,5.

    Greetings

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