Confused about need for Arimidex

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ByFaith
ByFaith Member Posts: 270

I'm still asking this question as I near my 4-year mark on Arimidex. I've asked my oncologist, but haven't been forward enough in the past to ask them to explain what doesn't make sense to me. They offer I can take holidays or go off now if I want, but do recommend I stay on. Why the "magical" 5 years ... and some scientific studies investigating more years?

Then I wonder, why wouldn't they recommend an AI? It can't really hurt, and if it isn't tolerated or does cause medical trouble, you can switch AIs or stop if you need to. Why not tell your patients to take the AI pill? Seems like an easier decision for them, with all due (true) respect. 

I was DX'd w BC several years after a complete hysterectomy due to fibroids. I elected to remove my ovaries, and of course now I'm glad I did. Except ... they immediately put me on a low-dose estradiol patch, which I stayed on for several years until day of DX. Now I wish I hadn't taken it. I'd already had a great imbalance of extra estrogen (looking back) with the growth of the very large fibroids. I was just about ready (at that physical) to go off the low-dose estradiol patch when my mammo came back abnormal. 

SO, my question is this:

Do I really need an AI as much as other women if my ovaries are removed? I know I still produce a small amount of estrogen, but it must be an advantage for my ovaries to be gone? (A question I couldn't get answered.) You can see my stats below for tumor staging, size, etc. I'm sure innever had an Oncotype DX test and my MO did not recommend chemo for me. I've tried going through Cancer Math and find it confusing. My MO utilized Adjuvant Online, among other things, in determining treatment. 

What do you think? Would you still be taking the Arimidex? I can't seem to get ANY form of stats on how it's helping. I see some stats, but I believe those were from the obvious benefit (need) to have radiation. Could it instead be that Adjuvant Online said 13 more woman out of 100 were alive and disease free at 10 years from AI therapy? Chemo only added 2 more to the mix and my MO did not recommend chemo for me with my stats.

Would you be taking the Arimidex with no ovaries and my stats? 

Comments

  • corky60
    corky60 Member Posts: 726
    edited April 2014

    ByFaith, that is such a personal decision.  I can't answer your questions but if you are not having major SEs why not stay on it?  Yes, our body fat and nerves still produce estrogen.  Even with clear nodes it's possible for stray cancer cells to enter the bloodstream and hide out.  Just another year for you on Arimidex.  Be direct with your MO and see about getting answers to your questions.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2014

    I was told 10 years on it. I had 1 ovary removed about 40 years ago, still had one left, then a hysterectomy. Still had one left. It shut down about 15 years ago. I'm told that our body fat produces estrogen too, that's why the MOswant us to take it. 

    I'll do it if it stops the beast. What other choice is there, really. 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2014

    The purpose of aromatase inhibitors in post-menopausal women is to control the enzyme aromatase that converts androgens into estrogen.  This is a function is independent of ovarian produced estrogen, that is why AI drugs (Arimidex (anastrazole), Femara (letrozole), and Aromasin (exemestane) are only given to post-menopausal women - the assumption is that our ovaries are not contributing estrogen.  The reasons behind prescribing AI drugs for 5 years is that is what the clinical trials have indicated provides benefit.  It is the same for chemo regimens - drug combinations and numbers of infusion - all based on clinical trial.  The recent impetus behind prescribing Tamoxifen now for 10 years is that a newer clinical trial showed benefit.  To my knowledge, there are no definitive trial results that show advantage for more than 5 years of aromatase inhibitors.  This may be under exam now, but there is no final data available. 

    byfaith - your stats do not show up in your sig line - perhaps you need to switch them from private to public on your profile?  You mentioned cancermath, but maybe PREDICT would be easier to understand.  Here is a link to it, it is a newer tool, so maybe easier to decipher?  Make sure that you tumor size is in millimeters (this is a UK site), so a 1cm mass would be 10 mm.

    http://www.predict.nhs.uk/predict.shtml


  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    SpecialK ... Thanks for your quick reply. You really explained the role of AI therapy in a way that I can fully understand. I appreciate that, as well as the PREDICT site. It's very late, so I'll try to check that out tomorrow. 

    I need to learn that my team of physicians, including my MO, are happy to answer all my health and AI questions, and I shouldn't be shy if I don't understand an explanation. 

    As for my stats, they showed on another forum I posted on tonight and have shown up in the past without problem. I checked all my settings and they're clearly set to public. I'm hoping when I post this, my stats will show up here. It's odd they didn't show on my original post.

    Thanks again, SpecialK. I look forward to checking out Predict. 

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2014

    ByFaith - I argued with my MO about taking an AI. I was 13 years post-menopause, and 12 years post-hysterectomy. I assured her there was NO estrogen in my body. She looked at me and very kindly said "But estrogen is still produced in belly fat." (Of which I had plenty.) I went away and lost a bunch of weight, just to hear her say I didn't need the drug after all. Ha! She put me on Arimidex, saying that after surgery, my risk of recurrence was less than 1%. Losing the weight reduced that risk by 23%. And taking the Arimidex further reduced my risk by 50%. 

    Even though my risk of recurrence is very small, her point is that it's NOT ZERO. So I stayed on Arimidex for as long as I could stand it (1 year) then switched to Femara six months ago. So far, so good. As long as my SEs are manageable, I'll stay on the AI.

    ~ ~ ~ 

    SpecialK - that was an interesting site, but my "AI green line" was just a tiny hairline.

    This is what the results said: 

    Five year survival

    96 out of 100 women are alive at 5 years with no adjuvant therapy after surgery
    An extra 0 out of 100 women treated are alive because of hormone therapy

    Ten year survival
    92 out of 100 women are alive at 10 years with no adjuvant therapy after surgery
    An extra 0 out of 100 women treated are alive because of hormone therapy

    Are they saying that the AI makes no difference in my case?

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    My MO discussed with me and gave me a sheet detailing statistical outcomes with and without various therapies and why my therapy was recommended. One point I hadn't thought of was the number of women who had not survived after 10 years due to other means: car accidents, heart attacks, etc. In my case it was 4 women. I hate statistics, but clinical trials and statistics are all they can conclusively cite. 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2014

    blessings - yes, it does appear to say that.  Have you looked at cancermath (lifemath)? Does it say anything differently?  I think what PREDICT does not do is split hairs - like your risk is 1%, the AI reduces your risk by 50%, but that ends up being .5 percent, so maybe they are rounding down.  When I put my info in only 59 women out 100 are alive at 5 years without adjuvant systemic treatment, but with an AI it improves by 10, and with chemo and Herceptin by 17 beyond the hormonal therapy.  At the 10 year point the advantage of hormonal therapy is actually increased for me by 3%, but overall survival with hormonal, chemo and Herceptin has still decreased by 5%.The numbers on Cancermath are fairly consistent but they don't factor in Herceptin with their chemo options.

  • Wynne50
    Wynne50 Member Posts: 67
    edited April 2014

    Special K and Blessings.  I just used the predict  you posted and mine said 95 out of 100 at 5 years, 89 out of 100 at 10 years, 0 more alive w/o therapy at 5 and 1 more alive at 10.  My stats are almost the same as Blessings except my tumor was Grade 1.  I wonder what the difference is?  Maybe age at DX.  

    I'm wondering about all this because I have my first appointment with MO tomorrow  and I suspect Hormone Therapy will be recommended.  It's really odd but that has me more upset than the original DX and surgery options.  I have no idea why.  Maybe because it's never really hit me yet that I have cancer and it is something I have to take every day.  Surgery was over and done with.  I'm just really dreading this whole appointment .  Does anybody ever just have surgery and then no further treatment recommended.

    Thanks all.....

  • Raisa
    Raisa Member Posts: 14
    edited April 2014

    Today I decided to ditch the Aromasin that I was switched to from taking Anastrazole for last 15 months. Side effects I have from all these estrogen receptor blockers are awfull and,  I believe,  less researched, so we are , ladies , still all guinea pigs, compare to the clinical data available about Tamoxifen. I won't take Tamoxifen because it has a risk of blot clots, I don't want to die from. I have very similar history - hysterectomy due to multiple fibroids, then 4 years later oophorectomy due to huge benign tumor, then 2 years on very low dose of HRT (estradial) to battle horrible hot flashes and insomnia at age of 47, and boom! 4 years later - IDC. I have 23 out of 60 listed possible common various side effects form Aromasin (http://www.webmd.com/drugs/drug-17966-Aromasin+oral.aspx?drugid=17966&drugname=Aromasin+oral&source=2&pagenumber=6), and I have very distinct 29 out of 69 listed side effects from Anastrozole (http://www.webmd.com/drugs/drug-1555-Anastrozole+Oral.aspx?drugid=1555&drugname=Anastrozole+Oral&source=0&pagenumber=6).

    Every time I ask my oncologist questions, I see that they don't know much and speculate sometimes... I feel that if I take it for next 5 years,  I could be disabled just from taking this "rat poison". The most bother-some listed side effect is heart failure - then you are done... cancer or not. My oncologist never told me all possible side effects, just some, like joint pain and bone loss and fractures, hot flashes.

    I currently enrolled in clinical trial for Vit D3 and Ca affects on side effects of taking all these estrogen receptor blockers, and I have to tell you, they still see estrogen concentrations present even with Aromidix/Anastrazole/Aromasin taking. Also I read articles about that one of the fractions H27 of cholesterol will mimic the estrogen and act like an estrogen. They still researching long-time side effects from these, and we are the guinea pigs. My hands and feet are allready crippled, I always tired, depressed, my hair is thinning, I gain about 40 lbs, I can't effectively excercise due to pains, I have hot flashes and can't sleep. This affects everything - your well-being, how you look, how you feel, your relationships at home and work.  I am done with this. I am going to take every other alternative to pharma means to prevent cancer from coming back.

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    Hi Raisa,

    After nearly 4 years of taking AIs (Femara for a few months, then Arimidex), I, too, have suffered from a vast array of side effects. Fortunately, none have been serious, but they have turned me into what feels like a 90-y/o woman in my mid 50s. My healthy and strictly organic diet helps. Exercise helps, but a chronic disability makes that difficult for me to do on a regular basis. Some women have near-zero side effects; others have to switch AIs or reluctantly stop after significant side effects. I believe most women stop because the side effects are robbing them of their current quality of life. Indeed, it's a very individual and personal decision. 

    Since I've made it nearly 4 of my 5 years with no significant health problems, I feel I will shoot for 5 years, knowing there are no guarantees, but also knowing I've put nearly 4 years in and don't want to stop now after fighting so hard. My worst side effects have been severe depression and development of osteopenia (osteopenia stabilized). I still have low-normal blood pressure, good cholesterol and lipid levels and normal lab tests on checkups. If my BP or cholesterol or other lab values were impacted negatively, I might think seriously about stopping. 

    I spoke with my MO yesterday and was advised that since my depression has reached such a severe and critical state, I should take an Arimidex holiday. The severe depression feels drug-related, and I'm very in tune with my body. I have a psych consult next week and am beginning cognitive behavorial therapy with a psychologist. I feel better seeing the psych next week off Arimidex because I feel it was immensely exaggerating my depression and I wanted the psych to see more of my baseline. I will definitely mention the recent depressive effects from the Arimidex, but it's also in my records. 

    As for estrogen still found in our bodies while taking hormonal therapy, someone please correct me if I'm wrong, but the AIs do not block all estrogen production. Is it the parathyroid gland that still produces estrogen? Also, excess body weight can produce estrogen.

    Right now, on my oncologists's recommendation, I'm on an Arimidex drug holiday until my regular checkup in less than 4 weeks. I feel like I've lost my (imaginary or real) "AI security blanket," but my severe depression is so critical at this point, although it scares me without my AI on board, my oncologist said not to worry. Although I've had mild to (at my worst) moderate depression for years prior to Arimidex, I know my body well and can feel this critical state is caused by the AI. The same thing happened with Femara, but right away. Thank goodness I'm not suicidal and have great support. And, as always, I'm blessed to be without recurrence and to have found my BC in early stage on my annual mammogram. 

    My very best to you and all my BC sisters. {{ Hugs }} 

    P.S. Info regarding AI study and gene mutation deleted after reading SpecialK's post below. 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2014

    byfaith - that article is about metastatic (stage IV) breast cancer patients who are using hormonal therapy as treatment, not as preventive hormonal therapy after treatment.  That is entirely different from what those of us who have been diagnosed at a lower stage and treated and are using hormonal therapy for recurrence prevention.

  • ByFaith
    ByFaith Member Posts: 270
    edited April 2014

    Thank you SO much, SpecialK. You've not only kept me from misinforming others, but have given me some relief myself. So they only studied metastatic tumors? I wonder if they ever plan to somehow test non-metastatic BC on AIs in hopes of perfecting hormonal therapy?

    Also, in my reply I mentioned my belief the body still produces some estrogen despite AI therapy, in reply to Raisa saying in her last paragraph that "....they still see estrogen concentrations present...." Am I correct in this belief? 

    Another curious question -- Would AIs in any way fight against ingesting estrogen-containing foods, such as non-organic chicken pumped with hormones? I can't imagine AIs helping that, so it's just one *more* reason I only eat organic now. 

    I appreciate your feedback, as I never want to misinform. Thanks. 

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2014

    byfaith - no problem!  Yes, for that article, they were only looking at metastatic patients for treatment.  I can't comment on the remaining presence of estrogens that Raisa posted about because I am not familiar with the trial she is on, or what her sources of info are.  Hopefully she will come back and elaborate.  I also limit food sources that contain phytoestrogens (plants), and try to only eat protein sources that are grass-fed or pasture raised.  Of course, animal protein by nature is hormonal because they are animals who reproduce - there will always be a level of hormone regardless of whether it is organic.  U.S. federal law prohibits the use of hormones for poultry and pork, but not beef - at least in part due to the industry standard of giving dairy cows hormones to prolong the time period for obtaining milk.  For that reason I do not eat dairy at all - I do not  feel comfortable eating a food product from a lactating animal, regardless if it is organic, but that is my personal choice.  Others are fine with consuming dairy that is organic, and has no rGBH or rBST.  And, yes, I do not think that AI therapy combats ingested hormones - the drug mechanism is to keep the enzymatic aromatase conversion under control.

    Here is a table of studies from Komen's site regarding disease-free survival of early BC patients taking aromatase inhibitors:

    http://ww5.komen.org/BreastCancer/Table43Aromataseinhibitorsanddiseasefreesurvivalinearlybreastcancer.html

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