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How Many are doing 10 years on Aromatase Inhibitors

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aussieched
aussieched Member Posts: 87

When I started on Femara, I was told I would need to take it for 5 years.  Now that I have finally reached the 5 years (and having experienced many side affects from the drug along the way), many oncologists are now saying that it is best to extend treatment up to 10 years.

How many out there, are being told to continue taking the AI for up to 10 years, and if so, what are the reasons the oncologists are giving you for the extension in time.  Is it because of the grade of cancer, number of positive lymph nodes, size of tumour, chance of recurrence?  At what point, or problems, or bone damage are they saying, no stop the drug, you can't take it any more

regards Ched

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Comments

  • heidihill
    heidihill Member Posts: 1,856
    edited March 2013
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    I am Stage IV and took Femara for 4.5 years. Then I was switched to Tamoxifen even though Femara was still working. I was having eye issues (requiring surgery), supposedly a rare side effect, and skipping Zometa infusions due to joint pain. So maybe that's why I got switched. Now I feel great.

  • doxie
    doxie Member Posts: 700
    edited March 2013
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    Heidihill,

    I would like to hear more about the eye issues that caused you to have to go off Femara.  Carrye just started a thread about eye issues in this forum.  I don't want to divert this thread from the original topic.  Thank you.

  • michellej1980
    michellej1980 Member Posts: 51
    edited March 2013
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    I'm only 32 and have jut started anastrozole. I woud happily take it forever as I'm so scared of coming off it. I hope that in 5 years' time there's enough research to prove it's safe to take for longer.

  • denise-g
    denise-g Member Posts: 353
    edited March 2013
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    I started Arimidex (Anastrozole) in October, 2012.  My MO said, "As of now you are taking it for

    5 years, subject to change to 10 years with the new studies being conducted currently."

  • pupmom
    pupmom Member Posts: 1,032
    edited March 2013
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    I really hope I take it for 10 years. I feel very safe popping that little white pill every morning.

  • Iniah
    Iniah Member Posts: 3
    edited March 2013
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    Hi there

    I was on tamoxifen for 8 months and had my ovaries removed, so now I have to take Arimidex. I was very scared to take the tamoxifen and ended up doing well on it. Now I am facing the same fear of side effects again... anybody out there doing well on this drug? Any suggestions?

    Thanks so much to all,

    Iniah

  • aussieched
    aussieched Member Posts: 87
    edited March 2013
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    Thanks to the ladies who have alread posted.  Yes I would like to continue taking it also for the 10 years, however after 5 years my bones have taken a big hit.  When I first started it, my onc said my bone density was like an 18 year old (I was 52).  After 5 years (plus I had my ovaries taken out before starting Femara) my bone density has dropped dramatically and now borlerline osteo.

    I have also developed debilitating lower back pain when I try to walk more than about 500 metres.  I really want to keep taking this drug for the 10 years, as I am frightened not to, however at this stage I am wondering at what price to my body.

    Would Tamoxofin be a better alternative.  When I ask my specialists they tend to sit on the fence a bit with answers, I guess as others have already said, they simply don't know the answers yet.

    thanks Ched

  • lago
    lago Member Posts: 11,653
    edited March 2013
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    I just passed 2 years. The SE are very manageable but I do worry about osteoporosis. I was osteopenic before chemo (still am). 5 years I think I'll be OK but 10 years! Not sure if my bones can handle it. My NP hinted that it might change to 10 years this past fall. I'm sure they will continue to do studies.

  • ruthbru
    ruthbru Member Posts: 47,221
    edited March 2013
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    My oncologist wanted me off after 5 years (that was in September). This is what he said; the 10 year recommendation for Tamoxifin does not carry over to Als, as they work in entirely different ways. It may turn out that 10 years is a good idea, but at this point there is no research to back it up. Als are 'serious' drugs & with my stats (mildly estrogen positive, no nodes) he didn't want me to risk collateral damage without proof that it would do any good. He did say that if someone were highly estrogen positive and were stage 3 with many lymph nodes involved, he would consider letting them stay on for no more than 7 years, just as a hedging the bet sort of thing. I would have stayed on if there was any science saying 'Yes, you should', but I didn't want to risk the other problems if the only way it was making me feel better was mentally. The highest recurrence risk is in the first 5 years, so if stick it out that far, you have really given yourself the biggest benefit already (and should congratulate yourself!). I have a checkup coming up soon. I'll see if he has altered his opinion any in the last 8 months.

  • aussieched
    aussieched Member Posts: 87
    edited March 2013
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    Hi Ruthbru, thanks for your response.  I was 80% er & 80% pr, and 1 positive node,  BUT my biggest concern is that I didn't have chemo, and here in Australia, were were not offered the Oncotype DX testing, so basically flying blind as to what treatment will help or not.

    At the time it was suggested that having my ovaries out would do just as well as the Chemo.  It sounded like a good solution at the time, however the more time I have had to read in the last 5 years, I have to wonder whether that decision would have given me the best outcome, therefore now I think I should continue the Femara (as suggested by my Onc) because I didn't have the chemo.

    I would appreciate it if you could come back and post an update after you have been back to your Onc.

    regards Ched

  • lago
    lago Member Posts: 11,653
    edited March 2013
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    ruthbru I totally feel the same way as your onc.  I'm not highly positive (30% ER, 5% PR) and no nodes. I'm not even sure I need it now but my SE are too bad so I'm sticking it out for the 5 years. 10 years is going to take some convincing. I wonder if the studies will break it down into luminal A, luminal B, High vs Lowly positive and if they will show a difference?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2013
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    Read pages 98-102 in the 2013 NCCN breast cancer guidelines (professional's version...NOT the patient's version).  It describes all the latest endocrine studies with the exception of the latest Atlas trial....  Bottom line....no one knows

  • ruthbru
    ruthbru Member Posts: 47,221
    edited March 2013
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    Foolish me, when I started it, I thought FOR SURE that there would be some answers after 5 WHOLE years. I didn't know how slowly the wheels of research turn! I was scared to go off myself; but my thinking is....besides the first 5 years being the 'the most likely to have a recurrence' time, I am also 5 years older, as we age our body naturally produces less and less estrogen, so that is a plus (who would have ever thought, in our youth, that we would think that not having estrogen a GOOD thing!). ARGH! I will report back after I have my checkup. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2013
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    Ruth...since there's no bottom line....the bottom line for now is that you have to make the best choice you can based on the evidence considering YOUR situation including QOL and then move on!  The beauty of the Atlas study was that there was now enough evidence that for many women, they could now CONSIDER 10 years of Tamoxifen.  I think, going forward, once we have more genetic based trials, we will be able to better stratify which patients could benefit most from certain therapies...More personalized medicine.....Until that time arrives, we will have these long, expensive studies that require a great deal of scrutiny to figure out what the evidence means for individuals and sadly, for many of us, we don't have the luxury of waiting to see what the results are.....I'm waiting for the SOFT trial preliminary results, despite being finished with ovarian supression.  Did I make the right choice?  Who knows?  We'll see probably sometime later this year....

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2013
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    ....and, I'd like to add....I was premenopausal at diagnosis and now three years into taking Tamoxifen and post menopausal, last month, I was offered an AI.  My MO and I went over all of the "evidence" or should I say, "lack of evidence."  He told me while he thought there was a "slight edge" to taking an AI now, he thought there was no right or wrong answer.  Our initial strategy was to take Tamoxifen for five years and then switch to an AI for five years.  Now he said, I'm looking at taking the AI for seven years pending info from ongoing trials.  Since I'm low risk of recurrence, the "edge" that I should receive is so small, that it makes deciding very difficult since I've had no problems with taking the Tamoxifen.  I have the prescription for the AI and I haven't filled it yet.  He told me to complete the bottle of Tamoxifen, wait three weeks, and then take the AI if I want to....

  • Golden01
    Golden01 Member Posts: 527
    edited March 2013
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    voraciousreader - Thank you for getting me to the right pages (again!) in the NCCN guidelines.Will be on my reading list for today.

    My MO strongly recommended 2.5 years AI and then switching to Tamoxifen. After getting a second opinion at a NCI designated center and reading a number of the studies for myself, I opted for the Tamoxifen first with plans to switch to an AI for another 2.5 years. I did it for my bones as I'm already osteopenic. This gives me a couple of years to "work on my bones" (vitamin D, exercise - my calcium intake was already good). At my last visit, my MO indicated that depending on research between now and then, once I've finished the first five years (2.5 Tamoxifen, 2.5 AI), he might recommend the AI for longer. My MO also used the words "slight edge" with AIs for me but felt there was no one right or wrong answer. 

  • aussieched
    aussieched Member Posts: 87
    edited March 2013
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    Ruthbru - I am in the same boat. Started Femara in 2007 and thought well at least I have 5 years and by then there will be a lot more evidence from studies to help guide me on what to take at that point.  Well I have reached the 5 years, but still have no guidance on how I move forward with WHAT treatment and for how long.

    Actually for the er+ & pr+ I have read that there are just as many recurrences in the 2nd five years as there are in the 1st 5 years, so that really scares me, as I thought I would be able to start relaxing a bit on the recurrence risk after 5 years, but apparently not.

    Ched

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2013
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    Ched... Where did you read there was as many recurrences in the second 5 years?

  • aussieched
    aussieched Member Posts: 87
    edited March 2013
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    Voraciousreader - I was on a site last night which said that, and I have also read it before in other articles.  I will go see if I can find it again, and get back to you.

    Ched

  • lago
    lago Member Posts: 11,653
    edited March 2013
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    aussieched was it either of these two links?

    http://www.lifeabc.org/risk_recurrence_more.html 
    http://www.guardian.co.uk/society/2012/jun/12/breast-cancer-recurrence-study-macmillan 

    I can't go by these general statements. My onc gave me my risk of recurrence within 10 years based on my biology, age etc.

    Without knowing the real details of the study and how/what they had for treatment, what stage, etc. we really don't know what this means. This article says the risk goes down substantially after 5 years in a different study: www.reuters.com/article/2008/08/12/us-cancer-breast-idUSN1248209720080812  Maybe women in the US have a better survival/NED rate than in Great Britian. 

  • ruthbru
    ruthbru Member Posts: 47,221
    edited March 2013
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    My understanding is that the highest risk of recurrence is actually in the first two years, and then after 5 it takes another dive....triple negative gals start out with a higher risk the first five years, but if they make it to 5, then their risk drops below ours....ours keep dropping, but not as low as theirs. Note in lago's study that they did not factor in Als for five years, so our recurrence risk would actually be lower than the study's figures. Smile

  • jessica749
    jessica749 Member Posts: 50
    edited March 2013
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    Iniah, have you had a hysterectomy in addition to the removal of your ovaries? Did your MO say that you will be switched to AIs after only 8 months on Tamoxifen? I"m wondering why you would swich if you've only been on it 8 months, and if you are doing well...I had my ovaries removed and a hysterectomy about one year into Tamoxifen and while I assumed my MO would switch me to AIs, my MO has kept me on Tamoxifen.  Last appt said I'll probably keep taking Tamoxifen for 10 yrs...something about the risk for Tamoxifen in post menopausal women is uterine cancer, and now that my uterus is out also, I'm not at risk for that...has your uterus been removed also, or not? 

  • aussieched
    aussieched Member Posts: 87
    edited March 2013
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    Hi Ladies,

    This is not the site I was on last night, but you know, when you are specifically looking for a site you can never find the same one again.  I will persist and keep looking, however in my search, I have just found this one below.  Actually over the years I have seen it written many times that the er/pr have just as higher rate of recurrence in the second 5 years, so it was not something new that I only just read.

    Don't know how reputable this site is though.

    secondopinion-tv.org/episode/breast-cancer-rcurrence

    Sorry I don't know how to copy websites, so that you can just click on it

    When I find the other site, I will post.

    I hope your comments above are "on the money" as it does get to you sometimes doesn't it.  I have now developed new types of tumours under my armpit (about 8) from the radiation, so I think this is also getting me down, and panicking about the future also.

     Ched

  • jessica749
    jessica749 Member Posts: 50
    edited March 2013
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    voracious reader: interesting, what your MO said re switching. hmmmm.  I am officially post meno. now too (oopherectomy, hysterectomy) and was told I'll be staying on Tamoxifen, possibly up to 10 yrs now.  Was surprised I wasn't switched, said so.  MO looked at me like why would I switch you? I  said, I just thought you were going to, and that was part of why I received a bone density test the last time, to get ready for AIs. No.  I was misinterpreting the plan. MO intends to keep me on Tamoxifen.

    Part of me is just exhausted by all this stuff.  And feels that having chosen an MO who lives and breathes this stuff, the data, etc., I should just defer.   I was amazingly passive at my last meeting. I think MO was surprised I was so easy as I am usually up for "discussion" and education when I go :o)   Maybe next time I'll ask about this...about why they think for me at least that staying with Tamoxifen is better, although I am now officially post menopausal....I think the truth is that I'm scared of change/unknown, and feel safe taking a drug for as long as possible, and the prospect of being on tamoxifen for 10 yrs makes me feel better, because I imagine that after T I can switch to an AI....I think that's the emotional truth of why I didn't have the discussion at the last appt. (As if the discussion, or the question, would change the medical opinion!!).

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2013
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    Jessica... I was surprised that he said I could switch because as you recall, the NCCN guidelines mention 5 years of Tamoxifen for premenopausal women including those who become postmenopausal during the 5 years. The NCCN also suggests an additional 5 years of an AI for those who complete the 5 years of Tamoxifen and are postmenopausal. Now, interestingly, he didn't say I should switch. He said I could CONSIDER switching and he left the decision up to me. Of all my doctors, he seems to be the most gun blazing... I guess he wants as few of treatment failures as possible. So I think he thinks if the AI might give me a slight edge, then he needs to tell me that so I can make an informed choice. Right now, I am on the fence.

  • jessica749
    jessica749 Member Posts: 50
    edited March 2013
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    ah right, that's it. I began premenopausal on Tamoxifen, and that's what the data is about. I guess/think the data showing superior results when switching after 2 or 3 yrs to AI are concerning women whose bc was diagnosed when post menopausal...okay. That explains it. Thanks.

  • Layla2525
    Layla2525 Member Posts: 465
    edited March 2013
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    I have been on Femara for about 4 mths now. I was on Arimidex and had a serious allergic reaction. The Femara was fine at first. I ran out and was off it almost 3 wks. Now back on for about a mth and my memory is affected. I cant remember things, I cant sleep, I got terrible hot and cold flashes, I am tired and depressed. I can live with it for 5 yrs but 10?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2013
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    Jessica... Yes!

  • aussieched
    aussieched Member Posts: 87
    edited March 2013
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    voraciousreader/lago.

    With regard to my earlier statement re more than half of er positive recurrences happen after 5 years.  This is another site that I found which also states that.

    www.medscape.com/viewarticle/775807   (paragraph 5)

  • doxie
    doxie Member Posts: 700
    edited March 2013
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    It seems that Dr Sgroi is quite sweeping in his statement of more than 50% recurrences happen after 5 years.  It seems astounding, if correct.  But then we are so focused on those first 5 years, then 5 more because of the Oncotype.  If you are diagnosed at 55 and have a family history of living into the late 90s, then at 60 you may live another 35-40 years.  That is a substantial amount of time for a slow growing cancer to recur.  

    I remember often reading and seeing charts showing the Luminal B cancer recurrence rates after 5 years matching those of Luminal A.  Some of those charts go out to 15 years.  Relative to the first 2-3 years, these lines appear flat, but there is a very slow and steady decline indicating recurrences continuing for both.  I'm not including HER2+ Luminal B into this mix, just HER2-.