Hormonals after 5 yrs. Anyone switch from Arimidex to Tamox?

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KerryMac
KerryMac Member Posts: 3,529
edited September 2014 in Stage III Breast Cancer

So, I have been on Arimidex since August 2009. Yep, 5 years! Tonight I take my last one. Gulp.

My Onc is switching me to Tamoxifen, and I was wondering if anyone else has gone this route. I see people who started on tamox then switched, or who are staying on the AI longer than 5 years, but doing AI to Tamoxifen seems unusual. 

I have to say I have mixed feelings. I am reluctant to change what seems to be working, but my Onc is concerned about my declining bone density and wants me off Armidex. He thinks this is the right option for me, and thinks I can take Tamox for at least another 5 years "and then we'll see".  He always jokes that he is making it up as he goes along for me!

I was on tamox briefly after finishing chemo and before I had my ovaries out, and I can't recall too much in the way of SE's. I am interested to see how much of the stiffness/achiness I have is due to the Arimidex and how much to good old aging!

So tomorrow I will pop my first Tamox! Wish me luck.

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  • Outfield
    Outfield Member Posts: 1,109
    edited August 2014

    My understanding is that this is an idea that's been tossed around, but I've never seen a study looking at it.  My onc mentioned it in passing once as something that might be practice when I got to 5 years, but also that by the time I hit 5 years Arimidex recommendation might be for 10 years.  I don't think yours is absolutely making it up, but it does sound outside standard guidelines supported by the literature.  I'm not immersed in that field, so I wouldn't take me as the final voice about whether anything is published supporting that, but you could of course ask him for published evidence supporting it because he of course should be immersed in that field!

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited August 2014

    Well, basically, he told me that he is taking the following recommendation from ASCO, and "stretching" the time frames - to 5 years for each drug. The current ASCO recommendation for postmenopausal women who started on an AI is still only for 5 years in total o.

    • postmenopausal women who started taking an aromatase inhibitor but didn’t finish 5 years of treatment can switch to tamoxifen to complete 5 years of hormonal therapy
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  • Outfield
    Outfield Member Posts: 1,109
    edited September 2014

    That's a really different situation.  ASCO is talking about women who failed the first-line hormonal treatment for post-menopausal ER+ women:  AI's.  In general, If you fail first line treatment, you get second line treatment.  By current ASCO recommendations, you get the treatment for 5 years whether it's first or second line.  ASCO isn't saying that starting with an AI and finishing with tamoxifen is as good as 5 years of AI, just that they think it's better than nothing.  

    Doctors do make educated guesses in grey areas all the time, but just understand that's what he's doing.  

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  • everyminute
    everyminute Member Posts: 1,805
    edited September 2014

    If the choices are stopping with 5 years of AI and continuing with another 5 years of Tamoxifen while waiting for further studies - then I would take the tamoxifen.  I am a little different , I started with 2 years of tamox and then 5 years of AI and my doc said likely back to Tamox.

    It is all a bit of a guessing (educated) game, if they knew exactly what worked ....we would have a cure.  and we don't.  

    What they do know is that it appears that AI is better than Tamox and 10 years is better than 5 years but some of us don't tolerate the AIs well for  more than 5 years (and more studies are coming out on that).  In the old days (like a couple of years ago) docs would just pull us off the AI and say good luck.  The difference between studies that look at groups of women (and men) and our individual doctors - is that our doctors are trying to keep us (as individuals) alive. Thank God for that.

    Good luck KerryMac!  Keep us posted.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited September 2014

    Kerry

    good to see you again---

    I started out on an AI because I could not take tamoxifen due to an earlier blood clot-- at the 5 year mark, my onc took me off the AI---She said that there was not enough data to show more was better in my case..... if the research changes, I can go back on femara--but for now, nada..... I have to say, I did agree with her--- I wish I could say I noticed  a difference, but literally a week after I got off the drug, I was dx with thyroid cancer (completely curable) but frankly, it definitely distracted me!!!

    One of these days I will get my body back!!

    Hope you are well-- 6 years for us in October!!!

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2014

    I have been on tamoxifen for 2.5 years.  My onc told me there is evidence that an AI may be slightly better now that I am post menopausal.  She said since it am doing well on tamoxifen, she doesn't think i should change yet.  She said at 5 years would be a good time to switch.  But it was a lot of, I could switch now.... I could switch in 5 years... I could stay on tamoxifen for 10 years.  It sounded like there was not a lot of difference in any of the three options in her eyes.

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited September 2014

    I'm one of the people who failed the AI after around 2 years due to elevated liver enzymes.  My onc didn't want to see me on nothing so put me on Tamoxifen.  I found it much easier to tolerate than the AI's, and so far, knock on wood, it seems to be doing the job.  Now that several studies are showing that longer than 5 years on some hormone treatments are beneficial, I'm not surprised to hear that your onc is going in this direction.   My onc has already told me that I may be on Tamoxifen indefinitely if I continue to tolerate it.   Right now, I am OK with that.   When you understand how long it may take for a recurrence to appear, it makes a lot of sense to treat for more than 5 years.   

    It is good to see you KerryMac, and I hope you do well on the Tamoxifen.

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  • lbrewer
    lbrewer Member Posts: 766
    edited September 2014

    the new guidelines are not just for those who did not complete 5 years. Looks like 5 on AI and then 5 on tamo will be the new standard

    The new guidelines are based on the results of large studies showing that taking tamoxifen for 10 years instead of 5 years after surgery:

    • lowers the risk of recurrence
    • improves breast cancer survival rates
    • improves overall survival rates

    For women diagnosed with hormone-receptor-positive breast cancer, the updated ASCO guidelines recommend:

    • newly diagnosed premenopausal and perimenopausal women take 5 years of tamoxifen as their first hormonal therapy; after this first 5 years is done, the hormonal therapy taken for the second 5 years (for a total of 10 years of hormonal therapy) would be determined by the woman’s menopausal status:
      • postmenopausal women could take another 5 years of tamoxifen or switch to an aromatase inhibitor for 5 years
      • pre- and perimenopausal women would take another 5 years of tamoxifen
    • newly diagnosed postmenopausal women have several options:
      • take tamoxifen for 10 years
      • take an aromatase inhibitor for 5 years; right now, there isn’t enough evidence to recommend taking an aromatase inhibitor for 10 years
      • take tamoxifen for 5 years and then switch to an aromatase inhibitor for another 5 years (for a total of 10 years of hormonal therapy)
      • take tamoxifen for 2 to 3 years and then switch to an aromatase inhibitor for another 5 years (for a total of 7 to 8 years of hormonal therapy)
    • postmenopausal women who started taking an aromatase inhibitor but didn’t finish 5 years of treatment can switch to tamoxifen to complete 5 years of hormonal therapy
    • postmenopausal women who started taking tamoxifen but didn’t finish 5 years of treatment can switch to an aromatase inhibitor and take it for 5 years (for a total of 7 to 8 years of hormonal therapy
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