Thanking heaven: made ELEVEN!!!

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sugarplum
sugarplum Member Posts: 318
edited September 2017 in Stage III Breast Cancer

But this year I'm facing a crossroads - I'll take my last Arimidex pill tonight and haven't been able to find an oncologist to give me any more.

I find myself torn between gratitude for the last 11 years (which I always refer to as "gravy") and the unknowable results of stopping my AIs.

Best to all of you who are taking this unpredictable journey with me...

Julie

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited April 2017

    Thank heaven you made ELEVEN! I love it!! I'm a Look at Me I made THREE!

    I wonder why you can't find an onc to let you stay on the AI - are there some long term effects that we need to know about? Are there any studies you can print out and take with you to the doc? Can you try your primary? I hear you - though I've got seven or eight years before my last pill, I will likely feel the same way you do now.

    Congrats though on your ELEVEN!!

    Jen

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    Yes, I think there is concern over long-term bone health and other things. You might have more luck getting tamoxifen at this point. Did you discuss with your onc whether this would be an option for you?

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  • NancyD
    NancyD Member Posts: 3,562
    edited April 2017

    First, Congratulation on Eleven!!!!

    Second, My onc made the remark that I would be on my AI "for life". I hope he didn't think I would die before I hit ten years, which will be in about 1-1/2 years. As long as my bone density scans are good and I don't relapse, I think he will keep me on anastrazole.

    Shetland Pony has a good idea. I have heard of women switching over to tamoxifen after taking an AI for a long time. Seems to be a road to pursue.

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  • sugarplum
    sugarplum Member Posts: 318
    edited April 2017

    Thanks guys - my oncologist declined to prescribe Tamoxifen for me also - he says the results of a study released at the San Antonio BC conference last December revealed that beyond 10 years, risks outweigh benefits for someone my age (61). I do have osteopenia (which I had before diagnosis - it's worsened but has been stable the past couple of years) and he also says there could be heart issues. The 2nd opinion onc said he would renew my Arimidex if I took a 3-6 month drug holiday. I have an appointment to see yet another onc in July, so I guess I'll just have to try & hold out until then!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2017

    As I see it there are at least two important questions. First, are there trials that have tested the idea that continuing anti-estrogen therapy beyond ten years would be beneficial? Sometimes a drug can improve disease-free survival without improving overall survival, perhaps because it promotes some other serious health problem. It would be interesting to read the SABCS paper your oncologist referred to. Was it about a trial of aromatase inhibitors beyond ten years? Or about switching to tamoxifen? I found one paper that looked at letrozole 5 vs.10 years for stage 1-IIIa (link below). I like that your onc stays current on SABCS. The other question is what is your personal risk of serious health consequences from continuing anti-estrogen therapy weighed against your risk of cancer recurrence? Which is why you are getting opinions from oncologists who are up-to-date on the research and who can look at your whole personal and family medical history. Talk to them until you can feel comfortable with the plan going forward.

    An interesting factoid about tamoxifen is that for post-menopausal women it can improve bone health.

    It may help with that feeling of being unprotected to focus on regular exercise as a way to keep harmful estrogens low. Also avoid xenoestrogens such as BPA. Maybe you are already doing these things.

    http://www.onclive.com/conference-coverage/sabcs-2...


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  • 7of9
    7of9 Member Posts: 833
    edited April 2017

    Eleven!!!! Thanks for sharing and God Bless!!!

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited April 2017

    Congratulations on eleven........this is so great......

    Wishing you another eleven......and another eleven......and another eleven......etc.



    Jacqueline

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  • lkc
    lkc Member Posts: 1,203
    edited April 2017

    congratulations Julie for you. eleven is a wondrous number, Enjoy

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited April 2017

    Yay, Sugarplum! Eleven wonderful years. Great news.

    Are you on a bisphosphonate for the osteopenia?

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  • weesa
    weesa Member Posts: 707
    edited April 2017

    sugarplum, first of all, big congratulations on your eleventh! You had a scary diagnosis and have been diligent about doing everything right.

    You have some good minds here in this thread-- especially from Shetland Pony-- discussing the wisdom of continuing on with AI's. Since I bailed out of them at 5 years I don't have much advice except to say I have been fine.

    One thought though: Do you know if you still need an AI to reduce your estradiol level at the age of 61? There are special labs who will do a serum estradiol with a SENSITIVE ASSAY--important to ask for this and important to find the right lab. Many labs say sure they do estradiol level but they are gross sort of numbers, like to find out if a woman is pregnant or entering menopause. Studies have shown that woman with er positive breast cancer are not as likely to recur if their estradiol level is below 12. So find out if you really still need to keep taking the AI.

    Proud of you on your 11th. It is gratifying to see the success stories pile up from us old timers. Admiring you from afar....Weesa

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  • Castigame
    Castigame Member Posts: 752
    edited April 2017

    Congrats to sugarplum !!!! Wish you multiples of eleven yrs!

    You are inspirations to stage 3 sisters! Including myself.

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  • sugarplum
    sugarplum Member Posts: 318
    edited April 2017

    Once again, thanks to all my congratulators - you don't know how much you lift my spirits!

    sbelizabeth: I had 6 annual infusions of Reclast but ended those a few years ago because they stopped having any beneficial effects.

    weesa: I've seen you mention estradiol levels before - mine was checked during treatment and it had dropped to about 17 (I think) from over 200 (I think). My question is - would it make more sense to check that out AFTER the Arimidex is no longer in my system? To see what level I'm left with, medication-free? I will definitely bring that up to my (3rd opinion) oncologist whom I am scheduled to meet in July.

    I'm going to space out my bootlegged stash of pills to every other day - that way I'll only have to be completely off for 4 weeks before seeing the new guy. Mental gymnastics? Maybe :) Good exercise? Probably not!

    Julie

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    .

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  • ash123
    ash123 Member Posts: 99
    edited May 2017

    Congrats and hope for us.

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  • weesa
    weesa Member Posts: 707
    edited May 2017

    Sugarplum--Yes, you're right, you gotta wait a bit before you can get a good read on your natural estradiol level--I think its around two weeks. Maybe the fact you have osteopenia means low estradiol. Don't the two go hand in hand? weesa

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  • lisa137
    lisa137 Member Posts: 569
    edited May 2017

    Congratulations, and, thank you for continuing to show us that it can happen for us, too.

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  • vjenelle
    vjenelle Member Posts: 9
    edited May 2017

    Congratulations! I'm glad you made it. Thank God.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2017

    Congratulations and thanks for the HOPE!

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  • wallycat
    wallycat Member Posts: 3,227
    edited May 2017

    Congratulations!! May you have many, many more years.

    I tend to agree that more is not always better. AIs have their own risks. The devil is always in the details...would you have reached 11 without 10 years of AIs? we (and even the study participants of some of these researches) may never know. I did see a study a long time ago that said cancer can tweak itself to use fuels as it needs them...some women who had no response from traditional drugs but were given estrogen (yes, the real deal) actually improved and knocked back cancers. So I think it is OK to mix it up a bit and change things up.


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  • LM070917
    LM070917 Member Posts: 323
    edited May 2017

    congratulations sugarplum! That is amazing and so nice to hear! Definitely gives the rest of us hope! Here's to decades and decades more.

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  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited May 2017

    Congratulations on 11 years. That deserves a celebration. I hope you can find an oncologist who will prescribe the A.I's. My oncologist says I will be on them indefinitely. He is the same age as I am so I worry when he retires, I will need to find somebody with the same philosophy.

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  • sugarplum
    sugarplum Member Posts: 318
    edited May 2017

    Well, it seems I've gotten myself a stay of execution - the 2nd opinion onc finally agreed to renew me so I will have enough pills to get me to my July appointment with onc #3. I've PROMISED myself I will abide by whatever this one recommends - he's the clinical medical director at OHSU who has actually developed a chemo regimen & helped design the clinical trials leading to its acceptance as one of the standard treatments of BC. I'm sure he will be able to answer my estradiol questions!

    Thanks again for all of your support - Julie

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  • hopefour
    hopefour Member Posts: 459
    edited May 2017

    Congrats on 11 years!! Thank you for also sharing this celebration with us!! Grateful your 2nd opinion agreed to give you more Als! Please, keep us posted as you're ahead of most of us…. I love hearing the wisdom of those ahead of me. Just know you'll be posting in another 11 years with encouragement for us all!

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  • MamaOz
    MamaOz Member Posts: 432
    edited June 2017

    wow sugar plum

    Your an inpiration as I am just at the beginnings

    I did chemo , then just had bmx on may 20 , now doing PT/LT .. 3 of 29 nodes positive on right and surprise path report after surgery showed beginnings of new tumor starting in left so I am glad I chose to remove both

    I have radiation starting in july and my dr is suggesting the arimidex for me, I am 63

    So you did ok on the Arimidex ?

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  • sugarplum
    sugarplum Member Posts: 318
    edited June 2017

    MamaOz: Yes, I did OK; at the beginning (way back in December 2006) I noticed some joint pain - for example, when I got up in the middle of the night to go to the bathroom, my feet actually hurt to walk on - I also remember my hands/wrists hurting a bit and my body just generally "stiffening up." The night flushes had already started during chemo, so no change there - they have slacked off over the years, but my sleep hasn't improved :(

    My biggest concern has always been the bone deterioration (which we've been checking annually), and more recently some minor heart flutters/pain flashes (had that checked out last year, with no real answers to be found).

    Just try to hold on for the ride - it should hopefully get less bumpy as time moves on!

    Julie

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  • peacestrength
    peacestrength Member Posts: 690
    edited June 2017

    Julie, thank you for your post! Sending you gratitude and hugs!

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  • new_direction
    new_direction Member Posts: 449
    edited July 2017

    thank you for your post which gives hope, hoping for many more years for all of us

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  • MamaOz
    MamaOz Member Posts: 432
    edited July 2017

    weesa,

    I was wondering how long you took the hormone therapy, you used femera? It looks like your old soul is doing ok! 15 years?? Nice!

    Mamaoz


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  • sugarplum
    sugarplum Member Posts: 318
    edited July 2017

    I consider today a success - my wonderful 3rd opinion onc is allowing me to stay on Arimidex, although he acknowledged they don't have enough data yet to support its usefulness beyond 10 years. That's OK, I'm MORE than willing to gamble on it! We'll continue the annual DEXA scans to keep an eye on my osteopenia, and since I'm having my other hip replaced this October I'll plan to see a cardiologist & get a baseline evaluation for any existing heart damage.

    Rock on, sisters!

    Julie

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  • hopefour
    hopefour Member Posts: 459
    edited July 2017

    Wonderful Sugarplum!! Admire your fight and believe I'd make the same decision!! Thank you for coming back and up-dating us…you're our trail blazer…thanks for paving the way!!

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