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Just diagnosed with osteoporosis: Scared!

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viewfinder
viewfinder Member Posts: 199
edited August 2022 in Bone Health and Bone Loss

I recently saw my oncologist. She says that I have osteoporosis. She had me stop anastrozole after taking it for four years. She said to take 4000 IU of Vitamin D and 600 IU of calcium everyday.

I have to admit that I'm scared! I have pain throughout every part my body, limbs and joints, primarily from past falls. I can't walk up and down stairs by myself, can't sit on the floor because I'm simply unable to get up (not related to a weight problem). Doing weight-bearing exercises, which I've read helps, seem out of the question.

I'm unclear what to expect going forward. Any thoughts or advice would be appreciated. btw, I'm 77 years old and live alone.

Thank you!

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  • elainetherese
    elainetherese Member Posts: 1,625
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    Hi!

    I was diagnosed with osteoporosis after a few years of Aromasin + Zoladex. But, I didn't stop the Aromasin + Zoladex. My MO prescribed Prolia and my bone density has been improving. I no longer have osteoporosis but osteopenia. Small victories!

    Prolia is an expensive treatment; you could also take a much cheaper biophosphonate like Fosamax or Reclast if you think that will help your bone density improve.

    ((Hugs))

  • marinochka
    marinochka Member Posts: 82
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    Hm...strange that she did not suggest any medication to improve this situation. I am taking fosamax for example, once a week. There are other possibilities too.

    Don't be scared, I think, it is manageable. I take exemestane not anatrazole. I have osteopenia, and oncologist is watching it, because exemestane makes it worse.

    But i only take exemstane for 2 years. I hope i don't have to give it up because of osteoporosis. My oncologist said we will watch and try to keep it at bay in order not to give up exemestane

    You can try fosamax and check bone density in a year(it does not improve fast) to see if it makes any difference

  • threetree
    threetree Member Posts: 1,267
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    Viewfinder - I take Letrozole and was told that I had osteoporosis 2.5 years ago when I started taking it. The oncologist wanted me to take one of those bisphosphonate drugs and I declined, due to the fact that they have all their own awful side effects. Instead, I've been eating 6 prunes a day and I also incorporate 2-5 TBSPs of "first cold-pressed extra virgin olive oil" (apparently it has to be all those things) into my food every day. I also take daily walks, take the stairs, etc. more than I used to. At the last check, my bone density was no better, but it also was no worse. I'll take that. As long as it doesn't get any worse, I can live with it.

    Your inability to take stairs, and all that joint pain and more that you say you have could be from the Anastrozole and not the osteoporosis. I have fallen twice(flat down on hard surfaces) since I was told that I had osteoporosis and nothing ever broke, either time. A little bruised and mentally "wounded", but OK otherwise.

    If you google things like "prunes and osteoporosis" and "olive oil and osteoporosis" you will see that there are some possible alternatives to those drugs. Also look on here for posts by RuthBru. She also declined the drugs and did a lot of weight bearing and prune eating instead, and she says that her bones stayed the same all through her AI treatment and never got worse.

    Just some thoughts and ideas. Sorry to hear that you've got the osteoporosis and I hope things get better one way or another.

  • bcincolorado
    bcincolorado Member Posts: 4,696
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    I developed ostepenia from my hormonal meds. My MO caught it first and then ordered scans to confirm then put me on Prolia which I was on until I finished my treatment and she know I was where I had been before but still keeps an eye on me. It does work well.

    I did have to get pre-approval before every single shot though but it does work in bulding back your bones again. She also had me double up on my oral calicium intake I was taking. You may want to check your MO about your options.

  • quietgirl
    quietgirl Member Posts: 165
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    I don’t know if this will help or not. My mother was diagnosed with osto in her 70’s (not medicine related). For a couple of years she took fosamax and she did have a couple of times where she had to get some injectable pain relief and was on a daily prescription BUT she eventually weaned herself off of that (the pain relief) and now at 91 she does live alone and she is taking daily calcium but otherwise the osto hasn’t gotten worse. Obviously I’m not trying to say that you are going to have an easy road but I did want to offer a little hope that it’s possible to get your mobility back and the pain to lessen as well.

  • viewfinder
    viewfinder Member Posts: 199
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    My doctor casually mentioned a medicine but did not stress it. I don't recall why we didn't discuss it at length nor do I remember it's name. I said no to it based on our very brief discussion.

    I apologize for not remembering more details but the decision was for the D & Calcium.

    I read about prunes so will eat more than I normally do.

    In addition to some of the things I've read about osteoporosis like something may break simply by coughing, the reason I'm scared is because of past falls. My poor walking makes falling more of a possibility than when I walked normally.

    Maybe I should start using a walker. I have one but something called "pride" gets in the way. Plus, it's a great place to hang some clothes. 😋

    Thanks to all for your input!

  • elainetherese
    elainetherese Member Posts: 1,625
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    Whatever you do, you should probably get a dexa scan every two years. Maybe, quitting the Arimidex and adding the calcium will do the trick. If that doesn't help, maybe a biophosphonate.

    If you're struggling with getting around, the last thing you need to worry about is a bad fall!

    Good luck!

  • sarahmaude
    sarahmaude Member Posts: 336
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    I’m 20 years younger than you and also have full blown osteoporosis. This was baseline pre-anastrozole. I accepted the Prolia shot gratefully. I had no side effects from it and it also gives a couple of percent reduction in likelihood of bone mets, so that was a double win for me. My mom broke her hip at the age of 71 and for the rest of her life she suffered. She also had a severely arthritic knee opposite the hip that broke, so her gait was never good and she had pain from both knee and hip.

    With Prolia you do need to take vitamin D and calcium. That hasn’t been a difficult adjustment for me.

    Did you have a DEXA scan prior to taking anastrozole? I’m glad I did so that I can know that the osteoporosis was already there. I’m counting on being able to stay on anastrozole as it’s one of my best protections for a tumor that was much more aggressive than the one you list in your diagnosis.

    I would certainly question just droppyour Anastrozole and adding vitamin D and calcium. I don’t think that is the standard care for osteoporosis. Osteopenia, sure, not osteoporosis.

  • edwards750
    edwards750 Member Posts: 1,568
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    I can definitely relate to an osteoporosis DX because that’s exactly what I got several years ago. Part of the problem was taking Arimidex for one year because it attacks the bones. Idk why that didn’t resonate with my MO. She then switched me to Tamoxifen.

    I had horrific pain early on with my osteoporosis. The pain was really intense. My Dr prescribed Boniva and calcium tablets. Boniva once a month and calcium every day. I do have a Dexa scan every 2 years. The one I had several years ago was good as my numbers showed I was in the osteopenia stage. Last December however, I lost 4% density.

    My dr wanted me to switch to Prolia but I told her I was not diligent in taking the calcium supplements so let’s wait and see if I do take them regularly if the numbers are the same. Plus Prolia is very expensive even with insurance.I’m having another dexa scan in December so we will see.

    Fosamax can cause dental issues so I couldn’t take it because I do have dental problems. Prunes make me gag so they are not an option either.

    I do walk every day and climb stairs often so I am physically active - that is really important.

    Good luck you can manage it!

    Diane


  • rah2464
    rah2464 Member Posts: 1,192
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    I am 20 years younger than you viewfinder and yes I have full blown osteo as well. It is frightening to hear its there but diligent supplementation, along with other treatment options can help stabilize the problem. Your daily calcium intake needs to be 1200mg, not 600. It can be as easy as chewing two viactiv chews a day. Or you can mix up your calcium sources from food and supplements but be religious about it. Also ask for a referral to an endocrinologist so they can focus on your bone health if your MO won't prescribe any supportive medication such as prolia.

  • sarahmaude
    sarahmaude Member Posts: 336
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    Rah2464 mentioned Viactiv chews. This is what I take as well. They also have vitamin K in them. https://www.amazon.com/dp/B00HA6GUMO?ref=nb_sb_ss_w_as-reorder-t1_ypp_rep_k0_1_4&amp&crid=305SJYHHP0B40&amp&sprefix=viac

    What got me to try them as my MO says she takes them. They are little caramel shot chews and more like a tiny candy than one more pill. At first I found them to be kind of a strange texture. They have grown on me. Another thing I like is that they fit in my daily pill sorter. I put them in last and it works well so I don’t forget if I have or haven’t taken one.

  • threetree
    threetree Member Posts: 1,267
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    Viewfinder - I forgot to mention in my previous post to you, that if you are OK with fish like sardines and salmon (the kind of salmon that comes with bones) those too, can help. I found the calcium supplements to be a bit hard on my stomach and I also had concerns about calcium supplements after reading how the calcium often doesn't make it to your bones, but sits in and clogs up your arteries and heart instead. I quit the supplements, but eat dairy every day and have sardines and/or salmon with bones several times a week. That's along with the prunes, walking, stair taking, etc. So far nothing has gotten worse, but has maintained. Won't have another DEXA for almost a year, I think. Again, I fell real hard 2x since learning I had osteoporsis 2.5 years ago, and nothing broke. There is hope indeed!

  • viewfinder
    viewfinder Member Posts: 199
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    My oncologist mentioned Prolia to me. I don't know anything about it so will do some research. She also said I should speak to their osteoporosis nurse practitioner about my options so I'm going to call today and set up a teleconference.

    Thank you again to all who have given me such helpful information and recommendations. It will take me time to digest it all.

  • viewfinder
    viewfinder Member Posts: 199
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    I read the results of my bone density test online the other day. My oncologist never went over the results when I met with her, she simply said that I have osteoporosis. For some reason, I didn't think to ask at the time since I never heard of T-scores before I did a search for osteoporosis online.

    I contacted her through something called MyChart and she said she's going to have an osteoporosis nurse practitioner call me who will explain everything in detail. I am waiting for the call.

    Is it okay to post the finding here to get some possible feedback? Thank you.

  • elainetherese
    elainetherese Member Posts: 1,625
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    Of course, people will be happy to chime in, though none of us are bone experts. Hope you get a thorough explanation!

  • viewfinder
    viewfinder Member Posts: 199
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    Thank you elainetherese!

    Here are the findings:

    "From the bone mineral density measurements of the AP spine and bilateral proximal femurs, the lowest bone mineral density result obtained is obtained from the left femoral neck: 0.559 grams/cm2, T-score: -2.6."

    Is the T-score for all my bones or just the left femoral neck?

  • threetree
    threetree Member Posts: 1,267
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    Viewfinder. I can't remember exactly how mine went, but they usually check your spine and another area (femur?) with a Dexa. You can have different scores for different bones. Did you look at your results to see if they give an overall prediction? Did you look for more than one T score? They usually give a score for each place checked. Mine said something like overall I had a 25% chance of a fracture over the next 10 years. That was actually more meaningful to me in some ways than the T score numbers.

    Some only have osteopenia in certain bones, but osteoporosis in other areas, or none in some areas and either osteopenia or osteoporosis in another. I'm sure more will chime in with more and better knowledge.

  • viewfinder
    viewfinder Member Posts: 199
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    threetree - I checked my report again and the only thing that is listed (except for a few things like type of device used) is what I placed above. It does say "AP lumbar spine and AP bilateral proximal femurs were evaluated with a DEXA device."

    I still haven't heard from the osteoporosis nurse practitioner. I'm sort of ticked that my oncologist didn't go over the results with me and I was too dumb to ask. Maybe they don't go over the results. I'll have to be patient and quell my apprehension.

    btw, threetree, I really dislike sardines and salmon. Will lobster work?? :)

  • threetree
    threetree Member Posts: 1,267
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    Viewfinder - Yes, I too think your doctor should have gone over the results with you. I hope the nurse calls soon.

    It sounds like they did the usual thing, i.e. the spine and then your hip. Usually there is a T score for each, if I remember, and sometimes they are different from one another.

    I'm not surprised about the dislike of sardines at all. Sometimes I hesitate to recommend them. They are truly one of those "love 'em or hate 'em" type things with no in between. It is the bones in the salmon and sardines (calcium) and the high vitamin D and omega3 content that helps with osteoporosis. I don't know that lobster (yum!) would help unless you maybe ate the shells? (ha, ha).

  • elderberry
    elderberry Member Posts: 1,058
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    As few days before I was due for my first bone density test I had a major face plant on a city sidewalk. I caught myself with my hands, flexing both wrists. The momentum carried me forward and I hit my forehead as well. Other than a goose egg on my forehead and severely bruised pride I was fine. My DEXA came back with

    L1 - L4 -3.3

    L femoral neck -2.3

    L Total hip -2.6

    Fracture risk: moderate

    Fracture risk in 10 years is 10% - 20%

    Will be 72 as of August 20. With MBC will I even see 82?

    Eating prunes when I remember. I like them a lot. Calcium supplements now combined with Vit D which i was already taking since I live in such a sunless place. . I am reluctant to take bisphosphonates after hearing stories about jaw bone death and spontaneous fracture in the femur. My MO is arranging for me to have an appointment with one of the leading Osteoporosis doctors in BC (based in Vancouver, of course) I expect to be waiting a long time to see him. I guess Dr. S REALLY wants me take meds and wants to have me convinced. He said I might have just been "lucky" with my face plant. I walk every day. go up and down stairs every day and schlepp heavy grocery bags home...a lot of the time.

    I don't mind sardines. I could have them on a cracker or something.

  • viewfinder
    viewfinder Member Posts: 199
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    mamarika - sounds like my oncologist. I was able to speak with a nurse who's been through all this osteoporosis stuff. After speaking with her I've decided not to take any prescription medicines; too many side effects. I'll continue with Vit. D and Calcium. I've also started taking some collegan every day.

  • viewfinder
    viewfinder Member Posts: 199
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    elderberry,

    Sorry to hear about your fall. Glad you were okay except for a few bruises!

    Your report seems more thorough than mine, which said nothing about "Fracture risk in 10 years." I wonder why not?!

    I've been told recently by my PCP that my osteoporosis is mild. Before that, I was really freaking out. Guess that can happen when your oncologist (who ordered the test) won't explain anything and instead wants to send you to someone else.

    Right or wrong, I've decided not to take any osteoporosis medicines. The nurse I mentioned said she took some for 10 years. When she stopped, her osteoporosis returned to what it was before she started. What the?! She's looks about 20 years younger than me (I'm 78).

  • rah2464
    rah2464 Member Posts: 1,192
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    My MO/endocronologist started me on Zolodronic Acid ( has other names like reclast etc) for two reasons. I am younger so I can stay on this medication longer (Im 58) and also its the same thing that is used for bone mets albeit at a lower dosing. So her thinking was that could be a side benefit but who knows.

    An endocronologist is more highly trained in this issue than your oncologist typically.

  • elderberry
    elderberry Member Posts: 1,058
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    There is a new bunch of osteoporosis drugs but you can only take them for two years then have to stop and take other osteo drugs.

    Would taking collagen improve my bones AND plump up my wrinkles?

  • jelson
    jelson Member Posts: 622
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    Elderberry, I just came across this article about a clinical study which showed Jarlsburg cheese, and only Jarlsburg cheese positively impacting osteoporosis. Apparently Jarlsburg contains vitamin K. https://nutrition.bmj.com/content/early/2022/06/29/bmjnph-2022-000424 While the study group was healthy premenopausal Norwegian women and the goal was looking at prevention, I think there would be no harm and perhaps benefit to add Jarlsburg cheese to my diet!!!

  • threetree
    threetree Member Posts: 1,267
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    Jelson - Thanks for posting this. Yes, looks like it was aimed more for pre-menopausal, and then there were only 66 women in the study group, but it is interesting. I'm one who happens to love sardines, so maybe when I have them with crackers, I can also add a slice of Jarlsburg with each cracker - always loved Jarlsburg, but quit eating it years ago as I assumed cheese wasn't all that great for overall health, but I think I might re-visit the idea. I also read that parmesan contains the most calcium of all cheese, and was considering adding that in sometimes too.

    (I have post menopausal osteoporosis and am doing all I can to not take those drugs. So far I've at least maintained while taking Letrozole. Won't have another Dexa until next January or so. At this point, I'd be happy to maintain my current status and just have no more loss, but improvement would be great, of course. I do not want to go the drug route if I can avoid it if at all possible.)