Is Arimidex worth your bones?

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I was diagnoised with stage 1 breast cancer about 2 years ago.  I have been through a bilateral masectomy, 6 rounds of chemo and had my ovaries removed (as my mom had ovarian cancer).  I had issues with the mediport that landed me in the hospital and developed cateracts after the chemo.  I've been on tamoxifen but now that I am in menopause my doctor would like me to switch to Arimidex...but it will cause me to have osterperosis.  Yes, there are drugs for that too, Prolia is what she recommends...but that may cause your jaw to deteriorate..

I have to say...I'm pretty much done with the drugs.  Each one of them causes more problems.

I have lost my breasts, my ovaries and my eyes.  I'm not ready to give up my bones to.

For now I am choosing to stay on Tamoxifen.   Is there anybody out there feeling the same way?  These are horrible decisions to make.

Comments

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2012

    Being on arimedex doesn't automatically mean that you will develop osteoporosis. I have been on it for over 4 years with no other medication. I have a yearly DEXA, and my bone density is still in the normal range. I exercise a lot; including light weights and walking (you could do any weight bearing exercise you like) to build up my bones. I also make sure I get a couple serving of calcium rich food (milk, yogurt etc.) every day and take a calcium supplement. So, unless you already have problems with your bones, there is no reason to take another drug or to expect that you will have bone issues. I would say to try it, and if you develop problems you could always go back to Tamoxifen.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2012

    Osteonecrosis of the jaw is an se but with low incidence. If you do go the Arimidex and Prolia route, get all your dental needs taken care of before hand and let your dentist know about your plans. I take Arimidex and Aredia, for bones, have have been doing well .part of the reason I get Aredia is because I have a bone met so my situation is a bit different

    Caryn

  • bangotti40
    bangotti40 Member Posts: 19
    edited March 2012

    I started on Femara and switched to Arimidex.  The joint pain in my hands with both of these medicines was indescribable.  I cried every day because it hurt so bad...even if I was simply sitting still and not moving my fingers.

    My doctor switched me, age 51 and postmenapausal, to Tamoxifen.  He said there is only a 3% difference in being disease free 10 years from now.

     I'll accept that 3% chance for a chance to have a better life in the next 10 years.

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2012

    Cataracts do not 'take your eyes away'! I just went through cataract surgery and I can assure you, my eyes were not lost. Also MANY people develope cataracts that have never had any cancer TX.



    I've been on Femara for 2+ yrs - never on Arimidex or Tamoxifen - and yeah there is a possibility that my osteoporosis was fastened by it. BUT I have a large family history of it so I'll do what I have to to handle it. I'd much rather deal that than with a reoocurance. Oh BTW since I was DX'd my thyroid doesn't like working and I'm hypoglycemic but that handleable as long as I'm alive which I am so that' better than the option of no longer being here.

  • harley63
    harley63 Member Posts: 94
    edited March 2012

    Hi...  I just wanted to let you know that I took Tamoxifen for 2 years, and then Femara for one... My bone density was compromised by the Femara, so I am now on Tamoxifen again, and will finish in about 6 months...

    I also didn't want ANOTHER drug to help my bones...  so for now, this is what I'm doing.

    When I finish the Tamoxifen, I don't want to go back on another AI...  I agree with you.  Enough is ENOUGH!   

    Good Luck with your decision....

    oh. and as for the cataracts, Tamoxifen can cause them.

    Harley

  • riley702
    riley702 Member Posts: 1,600
    edited March 2012

    I took Tamoxifen for a year and it wrecked my health (fatty liver disease, blood lipids through the roof, pre-diabetes), so at a year when I was determined to now be post-menopausal, I was switched to Aromasin and Zometa for my bones. Aromasin made all my joints ache and I'm now taking Arimidex. The aches are gone, we're re-evaluating my bone density, I'm on Metformin and am losing weight and girth, so we'll re-evaluate the fatty liver in a year as well. I guess my take-home message is that everyone responds to these medications differently. None is 100% horrible and none are risk-free. Sometimes you just have to try and tweak until you get the best results for you. I hear you being sick of this med, that med. I gave my onc fits when he wanted me to try "just one more", but I'm glad I gave in and tried it. I'm finally making progress after a year of SEs and frustration.

  • DFarro
    DFarro Member Posts: 10
    edited March 2012

    Thank you all for your responses. 

    Regarding the cateracts: I had cateract surgery on one eye.  It now see ghosts and glare around lights, anything that has a shine and anything light colored.  I am a graphic designer and photographer.   This is a problem and no one has a solution. I certainly can no longer drive at night. This is what I mean when I say I lost my eyes.   There is no one in my family that has had cateracts.  I got them from the large amount of steroids administered with the chemo.  With every treatmeant I told the doctor I was having problems with my eyes - I don't want to get cateracts.  I was assured I wouldn't.  Hmm. 

    And Regarding My Bones - I am small - 100lbs - my bone scanned showed osteopina which my breast surgeon said she would expect form someone my size.  My Oncologist says that if I take Arimidex I will have osteoperosis in 5 years and that I have to start the Prolia at the same time.

    Regarding Side Effects - I seem to get the side effects that only occur in 2% of the population.  I just can't take a lot of medication.  After my first round of chemo my  head was spinning so bad that I could barely put a sentence together - so bad that they sent me for a brain scan!  The problme was too many drugs. The dosage of my  treatments had to be reduced by 35%.  It seems the dose that is good for most people is usually too much for me. 

    For now my Oncologist has dropped the Arimidex idea.  Being thin and having no ovaries.. how much estrogen could I really have left.  She finally said that the Arimidex would proplem only decrease my risk by about 2%.

    Estrogen is good for your heart and your brain too.  We know Arimidex is not good for your heart but nobdoy talks about what it will do for your brain.

    Sorry for the rant :)  I have doctor fatigue!!! 

  • DFarro
    DFarro Member Posts: 10
    edited March 2012

    Kicks -  I had cateract surgery on one eye and it left me with ghosts and glare around all lights, shiny objects light colored objects.  Did you have a similar experience.  I am afraid to do the other eye.

    Thank you for sharing!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2012

    If you already have osteopina, then you are in a different situation. Although a 100 pound friend of mine with osteopina who was already on Bonvia completed 5 years of arimidex without any further damage to her bones. She is a crazy exercise person, weight bearing exercise is important to us all; not only with the bone issues, but also to keep the heart strong (no matter what else is going on). Best of luck!

  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    That cataract thing is scary for me, since there's a family history (the same G'ma with blood clots) and an eye dilation showed I have some tiny ones deep in there from when I was a child.  Add that I've had Arthritis since I was 22 and Mom had blood clots from Tamoxifen, I feel screwed no matter which med I would use!

  • otter
    otter Member Posts: 6,099
    edited March 2012

    I am wishing this thread was in the "Hormonal Therapy" forum, or maybe in the forum that deals with bone health.  It just doesn't feel like a "Just Diagnosed" issue to me.

    What I'm getting at is that many women who've just been diagnosed with breast cancer are terrified anyway.  (I sure was.)  It's too bad they are reading here about treatment options that will force them to make "horrible" choices.  Honestly, I just never considered the Arimidex/tamoxifen question to be a "horrible" choice.

    What was "horrible" was that first phone call announcing that I had invasive breast cancer.  Everything else, I figure I can deal with (and, so far, that's been true).   Certainly, I'd rather have been given a do-over, to erase the fact that I ever had cancer.  But, of course, that's not possible.

    I'm grateful I've had treatment options:   mastectomy vs. lumpectomy/radiation; Adriamycin-Cytoxan vs. Taxotere-Cytoxan; tamoxifen vs. an aromatase inhibitor (and 3 AI's to choose from).  Each of those choices had advantages and disadvantages.  Some of the side effects of treatment haven't been pleasant.  The fact that I had to weigh the pro's and con's and decide to tolerate unpleasant SE's in order to buy better odds at a long life really sux, ... but, hey, we're talking about cancer.

    At times like this, I think of all the women who came before me -- my grandmother among them -- who never had choices like those available to most of us.

    otter

    ETA:  I've re-read this post half a dozen times, and I'm worried it might sound insensitive and uncaring.  Please understand that I don't mean to minimize the seriousness of the O.P.'s problems. What she has dealt with is awful -- the mastectomy, the oophorectomy, the MediPort problem, the cataracts... the whole deal. 

    What I'm trying to do in my post is calm the fears of newly diagnosed readers who might assume from this thread that all treatments will lead to horrible consequences.  As others have said here, we should not assume that taking Arimidex will lead to osteoporosis... or, with only a few exceptions, that any particular treatment will inevitably lead to any particular consequences. I've been on Arimidex for 3-1/2 years, and so far, it hasn't affected my bone density at all.

    As one of the senior members of these Boards has cautioned, "Don't borrow trouble."

  • DFarro
    DFarro Member Posts: 10
    edited March 2012

    I apologize, I didn't realize I was posting in the Just Diagnosed forum. I thought I was starting a new topic...but now I see it is a new topic but in the Just Diagnosied forum.  If I could move it I would...but I don't think I can.   Maybe there is a moderator that can move it???

  • otter
    otter Member Posts: 6,099
    edited March 2012

    Sometimes it's hard to find your way around this huge "community".  :)s

    The Moderators have offered to move threads that don't seem to fit the forum they're in.  I think if you send a Private Message to "Moderators" and ask them to put the thread in a different forum, they'll see your note.

    On behalf of scared newcomers, I really do appreciate your offer.  Again, I'm sorry if my post sounded insensitive.  Oh, and for the record, I'm not the Post Police.  :)

    otter

  • DFarro
    DFarro Member Posts: 10
    edited March 2012

    Sorry to be so lame - but do you have any idea how to reach a moderator?  I don't see any links to email a moderator.  If it's easier I can delete my original questions.  Will that remove the whole thread?

  • DFarro
    DFarro Member Posts: 10
    edited March 2012
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited March 2012

    Member List --> search for Moderator. Select. Select "Send Private Message"

    Hope that helps. 

  • DFarro
    DFarro Member Posts: 10
    edited March 2012

    Thank you.  I have emailed a moderator a request.  Thanks for your help and best wishes!

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2012

    DFarro - Have you talked to your eye surgeon? And how long ago was it done? My first eye was done on Feb 15 and second on Feb 29 (2012). I was told that it is possible for a cataract to form on the implant but lazer would take care of it. It took probably 2 - 3 days to get 'normal'. The day after first surgery I called my surgeon's PA as when I put the predisone drops in it got 'cloudy' (for lack of another /better word). He told me to put the prednisone in and then in 10 - 15 mins. put the moistureizing drops in. Worked.



    Talk to your Dr. Just thought of something I was told was a 'call now' thing'- if there are white 'lights/spots' that move along the sides/anywhere, something about the stitches. Just dug out the paper work I was given and it doesn't say anything about the white light but I do remember being told about it.. It does list "Black streaks or a 'shower' of floaters or 'cobwebs in your vision" as a call the office.

  • DFarro
    DFarro Member Posts: 10
    edited March 2012

    Hi Kicks -

    Thanks for your advice.  I had my surgery in Oct 2011.  I think what you are talking about is that your eye can form a bit of scar tissue behind the implant which is very easily removed.  I spoke to my doctor about that.  He doesn't think this is the issue. 

  • otter
    otter Member Posts: 6,099
    edited March 2012

    DFarro, sorry I didn't see your note about how to contact a Moderator.  I forgot it's a multi-step process at first, and you have to search for a Moderator post or page before you can send them a message.

    Looks like your thread has found a good home.  This "Help Me Get Through Treatment" forum is a great place, because you're dealing with a lot more than just the bone density questions.  You should get lots of discussion here.

    I'm wondering if you should ask for a 2nd opinion on the glare from your cataract surgery.  My mom had cloudy vision after her cataract surgery, and she got really worried about it.  Turned out that it was a common result of the surgery, but it was lasting longer than anyone expected.  I think her ophthalmolo... her eye surgeon gave her some different eye drops, or maybe had her use her post-surgery drops for a longer time.  Her vision eventually cleared up nicely and she no longer needed glasses.  Your glare problem is lasting longer than hers did, though.  Seems odd that your surgeon can't figure out what's causing it.

    I hope you get some answers.  I know how frustrating and discouraging these things can be.

    otter

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2012

    The print out I was given does not say 'scar tissue' - the quote is -



    "Treatng a Secondary Cataract

    Months or years after surgery, a secondary cataract may form. It is caused by cells that grow between your new lens and the capsule that hholds it. This cataract is not painful. But it may cause vision problems similarhto the first cataract. In most cases, this cataract can be treated in your eye doctor's office. Laser (YAG capsulotomy) can be used for thia. It is a painless procedure. It only takes a few minutes. A laser beam is usd to make a small opening in the eye's capsule. This allows mmore light to enter. It willimprove your vision right away."

    This is from a VA print out.

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

    Hi ruth

    I am happy for your friend , but I have already broken three bones. (no fun!)  My gyn doc would not give me Boniva last yr as he said there is ' not enough known about it'.  I was on actonel at one time, and I saw on TV that it caused femur breaks so I hopped off.

     Of course, I never thought I'd be facing all of these terrible RX options!

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

    Kicks,

    RE ....  "possibility that my osteoporosis was fastened by it. BUT I have a large family history of it so I'll do what I have to to handle it.  I'd much rather deal that than with a recurrence."

    No offense  ( to each his own!)  but after breaking 3 bones, it is hard to bear the thought of possibly breaking a hip which can be life changing.  I  am just not 100% sure that I would rather deal with an acceleration of bone loss than reccurence- I guess partly because, I could have a recurrence anyway.

    It's all crap shoot , really.

  • pupmom
    pupmom Member Posts: 5,068
    edited May 2012

    Very wise words, otter. Like you, once I heard the cancer dx, all bets were off. I was going to do anything and everything to get rid of the beast. Yes, it all sucks, but modern medicine gives us the best chance of long term survival out there. My main symptom from Aromasin has been carpal tunnel. Somebody on this board told me to use hand braces at night and they work like a charm! Symptom fixed. I also feel creaky and achy in the morning, but I'm 63 so there's that. I get Zometa treatments and take Vit D3. My bone density has been fine. My feeling is that, barring a life threatening SE, I'm doing everthing in my MO's arsenal to beat this thing.

  • otter
    otter Member Posts: 6,099
    edited May 2012

    Here's another way of phrasing the O.P.'s question:  "Are you willing to double* the risk that your breast cancer will return, so that you can avoid the chances that your bone density might decrease from taking Arimidex?".

    I think it all depends on how you look at the question, and what other factors are involved in each individual case.  And, IMHO, it's the risk of fracture that's important -- not just the risk of a drop in the DEXA score.

    otter

    *ETA:  Pretty much all the stats show that hormonal suppression (tamoxifen or an AI) will decrease the risk of recurrence by about one-half of what it would have been without hormonal suppression.  (That means the two-fold difference is a relative decrease, for those paying attention.)  This benefit is especially true for post-menopausal women taking an AI.

  • DFarro
    DFarro Member Posts: 10
    edited May 2012

    I don't think Arimidex is twice as beneficial as Tamoxifen.  My oncol said Arimidex would reduce my risk probably by about 2% but the risk of osteoperosis for me is 100%, there is no doubt that I will have osteoprosis after taking Arimidex.

    As a side note, after being on Arimidex for 3 weeks I became anemic, my white blood cell count was low, and the lympadema came back.  I have chosen to stay on Tamoxifen - which is actually good for your bones.

    I am sharing my experience for those who are on the fence about it and feeling like they have no choice but to take these very strong drugs and that everybody else is taking them without a complaint.

  • otter
    otter Member Posts: 6,099
    edited May 2012

    DFarro, you are correct -- Arimidex is not "twice as beneficial" as tamoxifen.  I'm sorry -- I think you misunderstood something, or perhaps I didn't state it clearly enough.*

    The two-fold higher risk of recurrence I cited upstream is when someone with an ER+ tumor does not take any of the estrogen-blocking drugs (neither tamoxifen nor one of the aromatase inhibitors).  Several studies comparing the benefits of tamoxifen with those of the AI's have suggested that the AI's decrease recurrence risk slightly more than tamoxifen does in post-menopausal women.  That slight improvement over tamoxifen might not be enough to justify taking a chance on bone thinning, though, in someone who is already at high risk of a fracture.  That's why it's important to look at the whole picture, and not just a small part of it.

    I am sorry you had such a difficult time with your cancer treatment, and now with your 3-week experience on Arimidex.  Fortunately, many of us who take Arimidex have side effects that are manageable.  I've been faithfully taking Arimidex for just less than 4 years.  As my medical oncologist put it, the SE's of Arimidex are a whole lot more manageable than metastatic breast cancer would be.

    Each of us has to make her own decisions, though.  Just be sure to gather enough evidence to make an "informed" decision.

    otter

    *ETA:  I see now that I was the one who wasn't thinking clearly.  DFarrow is currently taking tamoxifen. She isn't proposing to quit tamoxifen. She wants to compare the recurrence risk on tamoxifen to the recurrence risk on an AI, to see whether the switch to Arimidex would be worthwhile.  As I suggested in an earlier reply, this forum is not a very good source of answers to that question.  Much more information about tamoxifen and the aromatase inhibitors can be found on the "Hormonal Therapy" forum.  There is also a forum dealing with bone health that discusses risks and management of bone density problems.

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

    otter:

    You said :"As my medical oncologist put it, the SE's of Arimidex are a whole lot more manageable than metastatic breast cancer would be."

    Wow! That's quite a scary statement .  Of course it depends on the dife effects too - some hot flashes ?  Been there , done that . Weight gain? I'm post menopausal, aches etc ... I have arthitis and osteopenia .  You are correct, and I agree that those are manageable Ses.  Now, a rapid cceleration of bone loss in an established disease process? THAT'S a horse of a different color.


    For me, in my situation, I  don't have  a very high risk of recurrence, being a  luminal A cancer, but I DO have  a very high risk of osteoporosis. Sometimes quality of life issues outweight other potential and sometimes small  risks.  Surely, if I were GUARANTEED that I was going to get a  metastatic cancer, that would be different , but as  all of us here know  ...

    there are no guarantees in life !

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