Arimidex, osteopenia, and my MO

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NayaBean
NayaBean Member Posts: 50
edited October 2021 in Bone Health and Bone Loss

At my first appointment with my MO on August 4, she prescribed Arimidex and also ordered a bone density scan. The scan results, which posted on MyChart recently, show that I have osteopenia. Clearly that's something that my MO and I should talk about at some point, but I'm not sure whether it is an urgent issue that needs to be discussed before my next appointment on November 3, or whether it can wait until then.

I thought I would have heard from my MO about the scan results when they became available, even if only in a MyChart message, but she has not reached out to me about that. I'm trying to decide if I should message her now about the scan results, especially considering that I am on Arimidex, or whether it is fine if I just sit tight and wait until our November 3 appointment to discuss this.

I ask about this here to get a sense of what the norm is in this situation. Would your MO reach out to you between appointments about something like the results of a bone density test? Or does waiting for the next appointment to talk about it seem like the normal course?

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  • jhl
    jhl Member Posts: 333
    edited September 2021

    NayaBean,

    In my experience, osteopenia is not an urgent issue and I feel can wait until your November appointment. However, in the meantime, you can take daily calcium with Vitamin D, which is probably what is recommended. Since you have a MyChart, you can send your MO a message & ask what measures you should take to prevent osteopenia from developing osteoporosis. Direct impact exercises, like walking, will also be helpful.

    Stay well,

    Jane

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2021

    My onc would call with a PET or CT result since waiting to find out if there is progression or not is nerve-wracking. But for something like this, no, it is fine to talk about it at the next appointment. Arimidex and bone health is a long-term management and monitoring thing. Nothing is going to change quickly.

    If you want to start taking any supplements a message to your onc would be appropriate. Mine recommended vitamin D3 but prefers calcium from food because there are heart health concerns with calcium supplements. She also okayed my idea to take magnesium, omega 3 fish oil, and K2. Your onc can order a blood test for vitamin D level, so if you ask for that in a message, you can have the results for your appointment. My onc also mentioned weight-bearing exercise.

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  • Sabbymama
    Sabbymama Member Posts: 103
    edited September 2021

    Mine did not. She just discussed it with me at our next meeting and she recommended Zometa infusions every six months to prevent further deterioration of my bones. I had already been taking Vitamin D daily as my levels are extremely low and Calcium as well, but not every day. And as others have suggested, walking daily is an excellent idea especially since keeping active helps lessen some of the joint pain caused by the AIs. Good luck!

    Cheers,

    Sabbymama

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  • DebAL
    DebAL Member Posts: 877
    edited September 2021

    agree with the others. Not an urgent issue. Treatment may depend on your score. I barely fall in the osteopenic category. So vit D, CA, exercise, resistance training etc Every 2 years is the standard for bone density tests. Good luck

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited September 2021

    NayaBean - As with the others, my oncologist took the issue up with me at the appointment following the scan and didn't contact me when the results posted to MyChart. My scan showed osteoporosis and osteopenia. The oncologist recommended vitamin D and calcium. I take D3 with K2 for better absorption and I only maybe once a month take one of the calcium pills, because I read on many reputable sites that there are serious concerns about calcium supplements just sitting in and clogging up your arteries and heart; not really getting out to your bones, so I try to get calcium mostly from diet. My oncologist doesn't like any deviation from the "standard of care" recommendations she makes, but I do occasionally divert.

    When I did see the oncologist, she suggested zometa, but I told her I'd rather watch and wait and she wasn't crazy about the idea, but she went with it. After a year, I had another scan that showed that after a year of letrozole, my results were essentially the same as when I started, so I continue to watch and wait, as I have real fears of bisphosphonates and their effects. I started eating dried plums (6 to be exact) every day, as they have been shown to increase bone density. I also work in about 2-5 tablespoons of extra virgin first cold pressed olive oil to my food every day,k along with taking the D and increasing dietary calcium, because that too has shown some promise with bone density. I think that might have been some of the reason my bones stayed the same during the first year of AI treatment, and I'm banking on the same for this next year and beyond. Ruthbru, who posts on here did all 5 years of the AI and ate the serving of prunes every day and her bones never got worse than whatever they were to begin with. She was also not interested in bisphosphonates. That's what I'm hoping for; same or better, just not worse.

    You are not in an urgent situation, so I would recommend just waiting until your next appointment.

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  • typhoon
    typhoon Member Posts: 80
    edited September 2021

    NayaBean - My experience has been similar to those of all the other folks who have chimed in. When she prescribed Arimidex, my onc also sent me for a bone density scan; turns out I was just over the line into osteoporosis, and my next appointment with the onc wasn't for a couple of months. What I *did* do was talk to my GP and get recommendations for supplements (I've added D3 and B12 to my daily multi-vitamin), and then sent a message through the patient portal, to the BC-specialist RN who is my primary POC in my oncologist's office, that I was adding the supplements. At the next appointment, my onc prescribed Zometa infusions every six months, for three years; I recently had my second infusion, with no issues so far, and all my blood work has been great. My onc also set me up with the nutritionist who works in her practice, to go over my diet and make sure I was doing everything sensible food-wise to maintain bone health.

    So, it's not an urgent situation, and you can definitely wait for your next appointment. But there are some things you can do - supplements, dietary changes if necessary - in the meantime. Messaging your oncologist to advise what supplements you are adding is definitely a good thing to do, as well. Good luck!!


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  • lexie2002
    lexie2002 Member Posts: 147
    edited September 2021

    Hi three tree, I was wondering if it's dried prunes or plums? You had mentioned both,Thanks

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2021

    Lexie,

    They are the same! When a plum dries, it's called a prune though I know there has been some effort to replace the name prune with dried plum. Some think prune has a negative connotation. There is a particular variety, maybe more than one, specifically grown to be dried. Before our lovely valley started sprouting silicon chips, we were the Valley of the Hearts Delight. That delight? Our fruit orchards. The blossoms on Blossom Hill Rd. were fruit trees in bloom. That last orchard in LG, near Hwy 17 and Lark Ave. seems to have grown houses…

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  • Jelson
    Jelson Member Posts: 1,535
    edited September 2021

    Having just seen this article yesterday, I thought I would share it in this discussion. It is not specific to those with breast cancer who are taking hormonal drugs known to impact bone loss, but I found it interesting how strong the recommendations are for non-pharmaceutical treatment - first. https://journals.lww.com/menopausejournal/Abstract/2021/09000/Management_of_osteoporosis_in_postmenopausal.3.aspx

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited September 2021

    Lexie - exbrnxgrl beat me to it! Yes, prunes and dried plums are the same thing! Ruthbru, the "dried plum" lady I mentioned before who posts on here, shared a little chuckle with me previously in a post or two about the fact that "prunes" has that negative image of just being something like "old people's laxative" when in reality they have much more to offer people of all ages, and that they are delicious too. She noted too, that the preferred term these days is "dried plums". What a difference semantics makes, huh? Thank you for explaining, exbrnxgrl!

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  • lexie2002
    lexie2002 Member Posts: 147
    edited October 2021

    What brand should I buy? Does it matter? I have tons of bone pain. :(

    Thanks,

    Lexie

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2021

    lexie,

    Any brand of dried plum/prune will do the trick! I like Trader Joe’s prunes as they are always very moist.

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited October 2021

    I get them in the bulk food section of my local organic co-op. I can get them at a local supermarket too in the bulk section too, but they are drier than the ones I get at the co-op. Think I'll look at Trader Joe's too after what exbrnxgrl said above. I just avoid those standard grocery store ones, like the ones in little individual wrappers, etc.

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  • PamEP
    PamEP Member Posts: 82
    edited October 2021

    Love those prunes!

    My last recent Dexa came back with lower osteopenia T-scores. Just in time for my MO consult regarding AI's. He favors Arimidex for my ER+ with Fosamax or Reclast to counter my progressive osteopenia. Geez, I would rather prunes and bone health supplements. The thought of cutting out estrogen terrifies me so I am considering trying Tamoxifen first rather than an AI, or maybe Tamoxifen then switching to an AI if I can beef up my T-scores. My MO is fine with that if I make that decision. Our choices are so poor, choose bad bones and heart disease or how about blood clots and uterine cancer...

    A pretty good book on supplements: "Your Bones" by Lara Pizzomo.

    Good article on Aromatase Inhibitor–Induced Musculoskeletal Symptoms: https://ascopubs.org/doi/full/10.1200/OP.20.00113

    Article on Cardiovascular Disease Mortality Among Breast Cancer Survivors: https://academic.oup.com/jnci/article/113/2/137/5868410

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited October 2021

    Thanks for the article post PamEP it was very interesting. It is obvious that estrogen plays such a vital role in our overall health.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2021

    imagethese aren’t bad. I get at Publix.

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  • lexie2002
    lexie2002 Member Posts: 147
    edited October 2021

    Can I ask what foods your referring to for bone health??

    Thank You

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