Osteopenia, TMJ and Arimidex

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rreynolds1
rreynolds1 Member Posts: 450
edited June 2015 in Hormonal Therapy - Before, During, and After

Hi Everyone,

I saw my oncologist today and she said there is an area of my left hip that has arthritis but my also have osteopenia.  Because I am on Arimidex, she is concerned about further bone loss and wants to give me a drug to prevent that from happening.  The problem is that I have TMJ which showed up in my bone scan and the drugs can cause deteriation of the jaw bone.  She wants my dentist to x-ray the jaw to see how bad it is.  Anyone else on Arimidex have this problem?  If so, how did they treat the osteopenia.  I am already taking calcium and vit. D3.

Roseann

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited October 2009

    Hi Roseann,

    Wow, I thought I was one of the few with this problem. I have arthritis of my shoulder, osteopenia, and wicked osteoarthritic TMJ. My oncologist has held my bisphosphonates partially because he's worried about possible early osteonecrosis, as my bone scan was newly positive near where the TMJ abuts the zygoma. So for now, it's just calcium (1200 mg/day) and Vit D3 (2000 per day). I'm also on femara. 

    May I ask where your bone scan showed positive? you mention it lite up at the TMJ itself?

    I have often wondered whether these aromatase inhibitors may be causing joint destruction or tenosynovitis of the TMJ and they just havent' studied it yet. Like the carpel tunnel syndrome which I had four years ago when on Arimidex (completed the five years). Don't ask, no one tells?

    Tender

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  • rreynolds1
    rreynolds1 Member Posts: 450
    edited October 2009

    Hi Tender,

    It showed up in my original bone scan before surgery.  The surgeon mentioned it but did not say that it would be an issue with my treatment.  I have only been on Arimidex 2 months and this was done before but it sounds like they have concerns about the treatments for my osteopenia.  Is femara a drug for that?

    Roseann

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  • Welga
    Welga Member Posts: 308
    edited October 2009

    Tender,

    I'm also having a problem with bone thining and lost too much since 2 1/2 years on Fermara. Cannot take  bisphosphonates either as I have too many dental problems, he wants me to swith to Tamoxifen and I wish I could stay on AI. I'm also on 1200 mg of calcium citrate since a month and previous on 1000mg. Did your onc recommend anything else to prevent furthur loss and I wonder why my onc is so prompt to swith me when yours seems confortable on you still taking it. So many questions.....thanks for sharing and was reading on another post that Aromasin was easier on bones, as I know you are very well informed this is why I'm asking, hope your bone loss stops and that you do well on Femara

     Welga

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited October 2009

     Hi All,

    No, I'm currently on no adjunctive therapy for aromatase induced bone loss (AIBL). However, I'm comfortable with this for about 12 months, as I received over the many years perhaps 13 or so total infusions for osteopenia and to prevent AIBL (I was totally unable to tolerate oral with severe GI effects). The incidence of ONJ increases with number of infusions, and I was nearing the number where ONJ incidence shot up.

     One item I've tried to gain information on, is how prolonged use of bisphosphonates need to be, and it seems no one knows. For example I've read that with each infusion a layering of the bisphosphonate withing the bone cortex can last for ten years. Furthermore, it seems that bisphosphonates reduction is osteoclast activity can occur after infusion, in some time dependent manner as yet ill refined. With more research, it may become more clear how to use IV bisphosphonates in the lowest dose, for the shortest time, and still provide control of bone loss as well as perhaps bone metastasis.

    Calcium and Vitamin D, perhaps the latter as yet undefined higher doses (to get your serum 1, 25 OH vitamin D definitely between 30 to 60 ng/ml, and leaning to 60 ng/ml) seems my current route. I'm not interested in PTH nasal use. Denosumab, the talked about RANKL inhibitor is on the future agenda as a sub cu administered drug. However there have been some questions about it raising the incidence of infections so the FDA and others are reviewing the matter within clinical trials. Weight bearing exercise may help, exercise stressing balance, and avoiding bone leaching drinks like soda if your a heavy soda drinker which contains phosphates and intermingle with phosphate calcium balance.

    Roseann, thanks for answering about your bone scan. I'm still a little on edge on my hot spot location (zygoma) although further scans showed nothing. Yet, not like me to relax for a bit.

    Welga, here is a link for you which cites the NEJM summary of the BIG-I 98 study on Letrozole, Tamoxifen alone and then 2 arms of Letrozole to Tamoxifen and Tamoxifen to Letrozole. YOur question about Femara to Tamoxifen is near the bottom. Please not the author's qualifier that statistical significance may not have been reached given numbers of enrolled and hence not robust conclusions may be drawn on the sequential arms.

       

    In early breast cancer, letrozole and tamoxifen alone or sequentially give similar five year outcome

    http://www.ukmicentral.nhs.uk/headline/database/story.asp?NewsID=7740

    This started out short. Sorry it's long. 

    My best to you all,

    Tender

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  • Welga
    Welga Member Posts: 308
    edited November 2009

    Tender,

     I'm very grateful for all the information provided, and I did not know that we could receive bisphosphonates in infusion. Also that jaw necrosis would be a problem only after 13 or so. Nice to know there is an option out there for me. 

    About tamoxifen versus femara, I am really surprised there is no benefit of one over the other. Either alone or sequentiel.  Since all the talk about wether we are metabolizing Tamoxifen or not came along, I wonder what could be done if we are poor metabolizer, and cannot stay on Femara because of possible jaw necrosis if we use biphos (on someone like me who has lots of dental problems) but need it for bone loss caused by Femara.

    Here in Quebec the metabolizing test are not done, I also cannot pay for medication that are not covered like I think Evista or anything else that would not be accepted by our governement as standard care, as of now I don't have to pay for any of my medication considering my being out of work and low income (bc brought this on).

    Wish you well, and love reading you  and also getting your advice always very clear and complete

     Welga

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited November 2009

    Thanks Welga. I must correct any impression I may have given that 13 is the magic number. No one knows the number of infusions it takes to develop ONJ as it depends on the individual. However, it is more common with the intravenous route (IV) and more common as one builds up the total number of infusions. I believe too, that somewhere in the mid-teens the incidence of ONJ on IV bisphosphonates really shoots up dramatically. Also, I've read it's more common if one switches from IV Aredia to Zometa. 

    Alas, much to be studied yet on ONJ and bisphosphonates.

     My best to you and thanks.

    Tender

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  • Welga
    Welga Member Posts: 308
    edited November 2009

    Tender,

    Yes I understand, nice of you to specify about the magic number. Intravenous route being more common for giving ONJ but easier on the stomach, really makes it hard to decide if one wants to go that way when having dental problem, really something to think about before starting any of them, I wish sometimes I was younger and did not have to worry about all those things, sigh.......or older as you say much to be studied on bisphosphonates, then we could get a better treatment option.

    I started out with good bone density, never thought I would end up having to rethink my treatment options. 

    Have a nice week-end

    Welga

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  • Colleen123
    Colleen123 Member Posts: 289
    edited November 2009

    I currently take Actonel for osteoporosis and osteopenia and am taking Arimidex.  I saw my doctor today and he suggested I switch to Aclasta, an intravenous drug taken once a year for osteoporosis.  He told me to look on the internet and read about it on the drug companies' websites to make my decision.  In the meantime he is sending me for required blood tests for Calcium and Phosphates in case I decide to go for it.  I have taken Fosamax in the past and then had a time without anything and now am on Actonel.  I worry about the side effects, especially the osteonecrosis of the jaw. 

    Does anyone have any experience with Aclasta? It has the same drug in it as Zometa.

    Thanks, Colleen

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  • chapstickmom
    chapstickmom Member Posts: 21
    edited November 2009

    Don't drink any colas ! All cola's -coke, pepsi, Dr. Pepper ,diet and regular contain phosophoric acid.

    Phosphoric Acid binds with calcium and takes it straight out of your system.

    Osteoporosis was unknown before Coke was invented. The worst part is women drink coke instead of milk - double whammy. 

    I drink either water or carbonated water like San Pelligrino with lemon or lime.

    No one on Arimidex should drink cola. Believe me - I spent 15 years in soft drink research !

    chapstick mom 

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited November 2009

    My onc said Arimidex is harder on the bones than some of the other AIs. When my bone density test showed I was developing osteoporosis in my neck and spine, my onc switched me to Aromasin which is not as hard on the bones as Arimidex. I am now taking Boniva once a month. Hopefully, I will see a positive change when I have another bone density test in March. I declined Fosmax due to all the litigation over dental & jaw problems.

    I also take Oscal. Caution - Most calcium tablets need to be taken with food for better absorption.

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  • Isabella4
    Isabella4 Member Posts: 2,166
    edited November 2009

    I'm on Arimidex, have been for over 6 years, and developed Osteopenia about a year ago.

    No-one explained to me than I should take Calcium/VitD along with Arimidex.

    I had to ask for a bone scan, I never even got a baseline at the start of Arimidex, and had no knowledge that this was needed. I got results of my Dexa scan, which showed Osteopenia, and even then was not offered anything. I had to ask again for Calcium/VitD !

    I have been having, over the last 2 years, 'crumbly teeth' sick of visiting dentist. He blames Arimidex. I have no TMJ.

    I lived on Coca-cola until I read what it does to your skeleton, about 3 years ago. I hate milk, and anything made with milk, and could drink a 2ltr. bottle a day easily !  Who knew.

    Isabella.

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  • rreynolds1
    rreynolds1 Member Posts: 450
    edited November 2009

    Hi Isabella,

     How frustrating.  I have had to do the research myself.  My PC told me before my diagnosis to take Calcium (I'm 59) but I found out about Vit D3 on my own.  There are special drugs to help osteopenia from becoming osteoperosis so I would ask your doctor.  In fact, I would get a better doctor based on what you said.  A bone density test is standard procedure before starting Arimidex.  I take 1000 mm of D3 per day along with my calcium.

    I'm sorry you have been given such poor care.

    Roseann

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  • Isabella4
    Isabella4 Member Posts: 2,166
    edited November 2009

    Hi Roseann.

    I have had to self advocate all the way thru the last 6 and a half years. If it hadn't have been for this site I would still be in the dark about everything.

    My doctors do not like me questioning 'why' about the way things are being done.

    I still am having an awful time with Arimidex, lots of pain, 2x carpal tunnel, 2x plantar fasiitis, fatigue, but was told this 'wasn't' Arimidex. Even though there were hundreds of other women screaming about the same symptoms I was told I was wrong. I was told NOT to go onto Internet sites, particularly the American sites....( you're all getting all you ask for because the insurance picks up the tab !! ) Our Health service is very 'hot and cold' some hospitals are very good, some, like mine, have consultants who are very obstructive, and seem to be overwhelmed with what is happening. We have endless queues, all waiting to see one main oncologist, its impossible she can remember each and every one of us, and there is just no way on earth can she closely monitor how a new drug may be working. There are queues for surgery, arguments about drugs, (unless you just stand and take whats on offer ), long waits between checkups, fights to get a copy of your reports....I waited 4 months arguing back and forth to get sight of my path. report 'NO-ONE has asked for this before !!!' (This from a major university teaching hospital !!!!) Now my GP just sighs and gets her receptionist to run me off a copy after all visits.

    I am just starting yet another battle to get a copy of my MRI scan, (told it is their report, not mine !!) I have requested they send a copy to my GP, which they have to do, then I will get it that way. Was told I wasn't getting it because I 'wouldn't understand the medical terms' Trouble is , as I get older I worry I won't have the fight in me to keep on doing this.

    Isabella.

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  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Hi Roseann

    I am refusing the arimidex due to my bones. I am far more concerned about treating my bone loss because the fosomax and actonel are worse than arimidex in some ways !!!!  ( i was once on actonel btw)

    I am seeing an endo dr Monday and hope she can help.

    If so...I certainly will post.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited June 2012

    Just an FYI: there's a whole Forum on Bones and Bone Health (created after the original posted started this thread).  Lots of info there, just scroll on down.... ;)

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  • purple32
    purple32 Member Posts: 3,188
    edited June 2012

    Yes, I know Peggy.

    THX!

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  • Rara
    Rara Member Posts: 2
    edited June 2015

    Hi, has anyone been on anastrozole and then developed osteopenia? I'm not surprised this has happened to me as I was on HRT for years for thinning bones, but of course - since BC, I came off that.

    I started anastrozole 7 months ago, and sure enough, I now have osteopenia although otherwise arimidex suits me really well. I have also been taking calceos but it hasn't prevented bone loss. My GP prefers anastrozole to tamoxifen for my age at 65, and also isn't happy with bisphosphonates (neither am I, really,) but I wonder at what point something will need to change?

    Anyone been in a similar situation? Thanks!

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Dear Rara, Welcome to the BCO community and thank you for reaching out with your question. We notice that this particular topic has not had recent activity. the last post prior to yours was June 2012. May we suggest that you start a new post with your question. You may receive more timely responses. In addition here is some information on anastrozole on our website. Stay connected and keep us posted. The Mods

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  • Rara
    Rara Member Posts: 2
    edited June 2015

    Thank you a lot dear Mod! Will check out the info about anastrozole on this site! Have a good day!

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