Side effect of Arimidex -- osteoporosis getting worse -- kinda scared

aisling8
aisling8 Member Posts: 1,627 Member
I realize there are those among us with more dire concerns than mine, but my oncologist is sending me to an endocrinologist because my bone density scan is even worse than a year ago. I've also been on Arimidex a year. It scares me. I've been exercising lots -- walking and Zumba (check out a YouTube video -- not the easiest thing to do for an hour:) and I upped the calcium and vitamin D dosages.

I drove home from my appointment totally freaked out expecting my body to spontaneously start fracturing. Don't know why, but in some ways this is frightening me more than cancer. I made the appointment with the endrocinologist and will soon have more info, but I'm still bothered.

Any one else experiencing this? And what has been suggested?

Thanks for giving me a safe place to splat my fears:)

xoxo
Victoria

Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    Victoria,
    I don't have any experience myself with Arimidex or bone density, but I just wanted to say I can empathize with how you're feeling. When my doctor told me I officially have high blood pressure last month, I think I drove home expecting my heart to give out any minute.

    Like you, I've been working so hard since treatment to be healthy (though ZUMBA?! Girl, you're doing better than I am!), so, when ANYTHING bad about my health pops up, I start to think -- hell, what have I been working so hard for?

    Let us know what the endocrinologist says, and know that we're here for you anytime.

    Traci
  • CAchick
    CAchick Member Posts: 277
    Me, too...
    Hi,
    I take Femara (which is similar to Arimidex-also blocks estrogen production). My oncologist is also having me come into the CA center every six months for an infusion of a drug called Zometa, which is supposed to help protect my bones. I take calcium/mag/selenium supplements too. I also try to stay active...I can sympathize since osteoporosis runs in my family, and now this!!
    Please share what you find out. If it helps any, so far my bones are OK...
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Don't freak!
    A bisphosphonate (boniva, actonel, fosamax, etc.) may be the ticket for you. I am on zometa which is an IV bisphosphonate given for bone mets and it has really helped with my bone density (which was decreasing for me even before arimidex).

    Menopause can really hit bones hard. Remember the biggest risk factors (which you can't change) are being female, being white or Asian, and getting older.

    Here is a good link from the Mayo Clinic:

    Osteoporosis
  • cabbott
    cabbott Member Posts: 1,039 Member
    Bone Builders
    Weak bones kind of run in my family,at least they did at my grandparents' generation, so I was very familiar with osteoporosis even before I was put on aromasin which is a cousin of arimidex. I rather insisted on getting on a bone builder(Fosamax) after my 2nd bone density scan showed that things were going downhill. I also work out daily M-F at the gym (both cardio and strength training), take 500 mg. of calcium twice a day plus a multi with calcium, eat a rainbow diet, and take vitamin D3 Fall through Spring. This year my bone scan was back to normal. Joy! Joy! So bones can be built back up.

    It really helps to know exactly what is tearing bones down. In my grandparent's time, milk was only for babies and they didn't eat a diet that would really work at building bones. I also was clinically low on vitamin D3 in spite of drinking fortified milk with D, taking calcium with D, and taking a multi with D. The nurse practioner told me that our bodies absorb some kinds of D vitamins better than others. I take the D3 in gel tabs made of fish oilnow anytime my feet ache, but for a while there I was on the prescription stuff. There are a lot of hormone situations that may limit how well your body builds bones. So go for the tests and see what they recommend. Though it may take time and some prescription meds, I bet your next scan will be better too.
  • poplolly
    poplolly Member Posts: 346
    Aisling
    I have osteoporosis

    Aisling

    I have osteoporosis (can't spell it-but I have it), and I've been worried about the same thing. I didn't take the medicine you're talking about, but I feel like the chemo meds didn't do mine any good!
  • New Flower
    New Flower Member Posts: 4,294
    poplolly said:

    Aisling
    I have osteoporosis

    Aisling

    I have osteoporosis (can't spell it-but I have it), and I've been worried about the same thing. I didn't take the medicine you're talking about, but I feel like the chemo meds didn't do mine any good!

    Victoria
    Victoria,
    I am very sorry. I am having a very similar problem, was diagnosed with osteoporosis in March. Eventually came to the term of my situation, was on Arimidex for 5 months only. I saw endocrinologist too who convinced my oncologist to change medication to Tamoxifen, My problem I cannot sit for more then 20 min. I will PM you later this week.
    Hugs,
    New Flower
  • aisling8mate
    aisling8mate Member Posts: 1
    Please
    ...don't break!

    John
  • lynn1950
    lynn1950 Member Posts: 2,570

    Please
    ...don't break!

    John

    Big smile........

    Big smile........
  • lynn1950
    lynn1950 Member Posts: 2,570

    Please
    ...don't break!

    John

    Osteo
    After chemo and starting arimidex, my bone scans showed the precursor to osteoporosis, osteopenia. I take Boniva once a month. I took D3 and calcium everyday for a while too, but I've neglected them for about a year. I got so tired of taking pills! And the vitamin pills are so hard to swallow. These posts are inspiring me to start taking them again, especially if D will stop by feet from hurting!

    Now that I've fought cancer, it's hard to accept ANYTHING else going wrong with my body.......
  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
    lynn1950 said:

    Osteo
    After chemo and starting arimidex, my bone scans showed the precursor to osteoporosis, osteopenia. I take Boniva once a month. I took D3 and calcium everyday for a while too, but I've neglected them for about a year. I got so tired of taking pills! And the vitamin pills are so hard to swallow. These posts are inspiring me to start taking them again, especially if D will stop by feet from hurting!

    Now that I've fought cancer, it's hard to accept ANYTHING else going wrong with my body.......

    I'll join the crowd. My
    I'll join the crowd. My bone density was a little on the low side prior to my diagnosis; now I have osteopenia. I, too, am taking Calcium, D3 5000mg and take Boniva once a month. I have been bad about exercising as I should, but I did take a Zumba class last night with my two daughters. Big Fun! I was amazed I lasted the entire time. I couldn't go full out with some of the movements (and I can't figure out where my sexy hip moves went) but I lasted through to the end and slept like a baby last night. We decided to sign up to go a few times a week and now that the weather is nice I think I'll add walking to my day.

    Remember the old days when women our age got to watch soap operas, bake cookies and spoil the grandkids? When did that change???? This old lady stuff is getting to be a lot of work!

    :D Chickadee
  • cahjah75
    cahjah75 Member Posts: 2,631
    Victoria
    I would be freaking out too. Osteoporosis tends to run in my family: aunt, cousin and sister. My sister with osteoporosis is the one who had bc 10 years ago and a recurrence last year. She was on Tamoxifen for 5 years but this time she didn't want to go on Arimidex so she is taking Evista (sp?). After breaking both shoulders (5 years ago) I was dx with osteopenia. My rheumatologist did another bone density test after I had only been on Arimidex for 1 month. There was no change. It will be interesting when I have my next one in a year. My aunt, cousin and sister had severe se with Fosamax and refuse to take it any more. Since going through menopause I have arthritis and osteopenia despite taking extra calcium and Vit D for more than 15 years. Because of my limited ability to go for walks or raise my arms, I'm concerned about not getting enough exercise to make a difference. I have also been told by a neurosurgeon that I have moderate curvature of the spine and I'm currently suffering from lumbar spinal stenosis. I have shrunk 3" in height in the past 10 years and struggling to get the extra weight off. I told my onc that osteoporosis was the one thing I was afraid of getting if I went on Arimidex. I see him next month and will definitely discuss this subject.
    {{hugs}} Char
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    I'll join the crowd. My
    I'll join the crowd. My bone density was a little on the low side prior to my diagnosis; now I have osteopenia. I, too, am taking Calcium, D3 5000mg and take Boniva once a month. I have been bad about exercising as I should, but I did take a Zumba class last night with my two daughters. Big Fun! I was amazed I lasted the entire time. I couldn't go full out with some of the movements (and I can't figure out where my sexy hip moves went) but I lasted through to the end and slept like a baby last night. We decided to sign up to go a few times a week and now that the weather is nice I think I'll add walking to my day.

    Remember the old days when women our age got to watch soap operas, bake cookies and spoil the grandkids? When did that change???? This old lady stuff is getting to be a lot of work!

    :D Chickadee

    Victoria ...
    This damn cancer! Never in a million years did I think that many of 'we' WARRIORS would have to deal with after affects of this dreaded disease. Yes, like so many I thought that once my treatments were over, I would go back to living my life care free.

    Please continue to fight with everything in your arsenal. Depleted of vitamins and minerals to keep us moving - UGH!

    I for one,is thrill to see this post, as so many other Sisters in PINK are facing similar issues. Thank you for sharing --. We are a support site, and we support each other in dark times, happier times and thru so many health issues.

    After reading John's post, I cried. Seriously! You are loved and cherished, my friend.

    Praying and hoping for no spontaneous bone fractures or breaks - - curious, where can we purchase 'super glue' by the buckets?

    Strength, Courage and Friendship,

    Vicki Sam
  • gagee
    gagee Member Posts: 332
    So sorry to hear about the
    So sorry to hear about the side effects. I to have had problems with my hands,feet,ankles and back-neck area. I now see an arthritis doctor. He put me on Plaquenil and Mobic. They also took me off Arimdex a few months ago. Doctor said this will always be with me and will get worse with age. Wish I had better news for you. I thought I was alone and just worried and cried over it for a long time. Plus my breast is not even half way healed from radiation. What a terrible devil this cancer can be. I feel terrible to complain out loud as many people are worse off than me.
    My prayers are with you.
    Diana
  • lizzie17
    lizzie17 Member Posts: 548
    Arimidex
    I have taken Arimidex for almost 3 years and live in fear of breaking a bone, by losing my balance or slipping, etc. I am in physical therapy for my neck right now--cervical something and bulging discs. It seems like Arimidex has so many side effects and clearly osteoporosis is one of them.
    But, now I have become lactose intolerant. There goes much of the natural calcium----I do drink the lactose free milk.

    I realize that the battle and the "little fires" never really go away.

    We must stay strong, follow the doctor's orders and do all we can for ourselves. Every day.

    (and now I hope I take my own advice) :)
  • aisling8
    aisling8 Member Posts: 1,627 Member
    lizzie17 said:

    Arimidex
    I have taken Arimidex for almost 3 years and live in fear of breaking a bone, by losing my balance or slipping, etc. I am in physical therapy for my neck right now--cervical something and bulging discs. It seems like Arimidex has so many side effects and clearly osteoporosis is one of them.
    But, now I have become lactose intolerant. There goes much of the natural calcium----I do drink the lactose free milk.

    I realize that the battle and the "little fires" never really go away.

    We must stay strong, follow the doctor's orders and do all we can for ourselves. Every day.

    (and now I hope I take my own advice) :)

    Thank you
    each and every one of you for your kindness, empathy, and thought filled replies. It helps so much sometimes just to be heard.

    What I forgot to mention is I've been on Fosamax close to a year so it's obviously not helping. The onc said after the endocrinologist rules out other causes, she may switch me to Reclast and replace the Arimidex with Tamoxifen. So there's a few things to try. Plus I'll up the exercise a few notches in an effort to help myself. Oh, goodie, more sweatiness :)

    I do know things could be worse. Much worse. I'm grateful I'm able to exercise, I'm grateful for life, and I'm grateful for all of you.

    xoxo
    Victoria
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    aisling8 said:

    Thank you
    each and every one of you for your kindness, empathy, and thought filled replies. It helps so much sometimes just to be heard.

    What I forgot to mention is I've been on Fosamax close to a year so it's obviously not helping. The onc said after the endocrinologist rules out other causes, she may switch me to Reclast and replace the Arimidex with Tamoxifen. So there's a few things to try. Plus I'll up the exercise a few notches in an effort to help myself. Oh, goodie, more sweatiness :)

    I do know things could be worse. Much worse. I'm grateful I'm able to exercise, I'm grateful for life, and I'm grateful for all of you.

    xoxo
    Victoria

    A bit confused, I am
    Onc wanted to start me on bisphosphonates when I started Arimidex (5 months ago). She said I was osteoporotic already. Told me to go away and decide which one I wanted to take (why me?). I had an appointment with my primary care physician so I asked her for her opinon of which drug to choose. Well, she didn't want me on anything yet - said I was only osteopenic and she didn't want me on the bisphosphonates until I absolutely needed to be. So I left more than a little confused and was expecting some trouble when I next saw the oncologist. When I saw her she said, "oh, I see Anca doesn't want you on a bisphosphonate yet. Ok. We'll recheck your bone density again in 2 years".

    I'm still a bit confused about all of this, but I know I don't want to take something unless I have to. On the other hand, I don't want to break a bone. I really trust my primary care physician and know she takes all of me into account, not just the cancer part. She went over my bone density test with me, and she spoke with an endocrinologist. It's just bothersome to get such opposing opinions - and this has happened more than once.

    It's really interesting, Victoria, that you still developed osteoporosis in spite of being on Fosamax. Hope you get to the bottom of your osteoporosis and can reverse it. Keep exercising.

    Suzanne
  • Ticky
    Ticky Member Posts: 117

    A bit confused, I am
    Onc wanted to start me on bisphosphonates when I started Arimidex (5 months ago). She said I was osteoporotic already. Told me to go away and decide which one I wanted to take (why me?). I had an appointment with my primary care physician so I asked her for her opinon of which drug to choose. Well, she didn't want me on anything yet - said I was only osteopenic and she didn't want me on the bisphosphonates until I absolutely needed to be. So I left more than a little confused and was expecting some trouble when I next saw the oncologist. When I saw her she said, "oh, I see Anca doesn't want you on a bisphosphonate yet. Ok. We'll recheck your bone density again in 2 years".

    I'm still a bit confused about all of this, but I know I don't want to take something unless I have to. On the other hand, I don't want to break a bone. I really trust my primary care physician and know she takes all of me into account, not just the cancer part. She went over my bone density test with me, and she spoke with an endocrinologist. It's just bothersome to get such opposing opinions - and this has happened more than once.

    It's really interesting, Victoria, that you still developed osteoporosis in spite of being on Fosamax. Hope you get to the bottom of your osteoporosis and can reverse it. Keep exercising.

    Suzanne

    Arimidex
    This is my own opinion but I think the Arimidex is causing the bone pain. I skipped Arimidex one day (I know not a good idea) but my bones stopped hurting. I was so concerned about my bone pain that I was afraid I had cancer in my bones so I paid $800.00 out of my pocket to have a bone scan only to find out that my bones are just fine. At least the $800.00 gave me peace of mind and I don't have to worry about having bone cancer every time I have bone pain.

    Have a good holiday everyone.

    Ticky