anyone on zometa for osteoporosis?

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bcisnofun
bcisnofun Member Posts: 488

Hi - I read the studies about IV zometa reducing the risk of bone mets.  I asked my doc about it and she suggested we check to see if I have osteoporosis and I do.  So Zometa or some bone drug makes sense.  The studies show that only the IV version reduced risk of mets, so I'm going that route.  Just a little worried about possible SE's of zometa and curious if anyone is on it who is not stage 4.  I would have an infusion only twice a year for 2-3 years.  Thanks for any thoughts.

Comments

  • tenaj
    tenaj Member Posts: 1,052
    edited February 2012

    I was put on zometa to prevent bone loss. Started on eligard(lupron) to out me into menopause & started on femera. Zometa 2x per year, I've only had 1 dose.

  • bcisnofun
    bcisnofun Member Posts: 488
    edited February 2012

    hi tenaj - thanks for the reply.  Any side effects from that first dose?

  • PLJ
    PLJ Member Posts: 373
    edited March 2012
  • tenaj
    tenaj Member Posts: 1,052
    edited February 2012

    Sorry to say I did. Flu like symptoms & fever 103 fever 4 days. But through these lovely ladies here I've come to learn that you need to hydrate days before & after. I see my onc this week, he doesn't even know I had a reaction in October.

  • bcisnofun
    bcisnofun Member Posts: 488
    edited February 2012

    thanks - I'm interested in the protocol too PLJ.  Yes, my med onc said the same thing - lower risk of jaw issues if only getting it twice a year. 

  • Linda1966
    Linda1966 Member Posts: 633
    edited February 2012

    I had zometa in October 11 as a bone scan showed a signficant decrease in bone mass . Found myself in extreme pain for a week or so (particularly in my chest to the extent I felt like I was having a heart attack for 16 hours). Couldnt work for a week, but after the pain settled down I felt normal again. Problem is while I had no teeth issue at the time, since the Zometa I have cracked 2 teeth (one should be extracted but doing so would risk necrosis so instead I will be looking for a root canal and cap). 11% chance of necrosis is too high a risk for my peace of mind. I dont believe the Zometa is the cause of the teeth cracking, but it has certainly complicated the necessary dental work.

    Was supposed to have Zometa 2 x per year, but will be refusing any further infusions and requesting something that doesnt carry the side effects. My GP had advised me to request Prolia, Actonel, Evista, Protos or Fosamax which he believes does the same job but without the side effects. I will be discussing these options with the Onc when I go back in April.

  • kt1966
    kt1966 Member Posts: 1,326
    edited February 2012

    Hi. I'm on zometa (5mg) once a year, as I'm on zoladex & letrozole & have osteopenia. I had nausea & vomiting for 2 days as well as the flu symptoms & bone pain (short-lived thankfully).

    If you do decide to go ahead with the infusion I would recommend have anti-nausea meds handy just in case. Rehydrating is important before & after, but hard to do if you can't even keep sips of water down. Of course it may not effect you like that :).

    Unfortunately the onc says because my infusions are so far apart I will prob get the same SE's each time- you are supposed to have lessening SE's each time- but not sure how close together the infusions have to be.

    I prob will have it again, but will be prepared- I want the extra insurance it provides against recurrence. 

  • bcisnofun
    bcisnofun Member Posts: 488
    edited February 2012

    Linda, tenaj, Kt, thank you so much for your replies! If you don't mind the ? are you pre or post menopausal?

  • kt1966
    kt1966 Member Posts: 1,326
    edited February 2012

    I'm pre-menopausal (just turned 46), was on tamox but decided with onc to shut down ovaries with zoladex and start letrozole because of ?progression.

  • tenaj
    tenaj Member Posts: 1,052
    edited February 2012

    I was premenopausal(51) started on eligard(lupron) & letrozole.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Just throwing in a little "for what it's worth" experience here, which may or may not be relevant to your particular situation.  I have osteopenia (right on the edge of osteoporosis) and am surgically post-menopausal.  I started Fosamax about 5 weeks ago (weekly dose of 70 mg--my doctor discussed the IV options but we opted to try this first).  This is my first experience with this type of drug.

    To my understanding, Fosamax and all similar drugs carry a risk associated with weakened jaw bones (and thigh bones, too...interestingly), which is why you'll often see signs posted in dentist offices telling you to let them know if you are on one of those drugs.  A few years ago I had to have a tooth pulled and an implant placed and the surgeon was crazy over the top about warning me of potential complications of those types of drugs when it came to your jaws and dental work.

    Also, I know side effects are different with everyone but here is my experience.  The first week on the Fosamax was awful, awful, awful.  Terrible stomach pain starting late the first night and continuing through the whole next day.  By afternoon of the day after my first dose, I had crippling joint and back pain that settled down the third day into general achiness joint/back pain for a couple of more days.  Almost quit after that dose.  Second week was much better and now it seems like I do get some minor flu-like symptoms (achiness, mostly) but so much better than that first week.  The worst part of it now for me is just taking it and making sure I am following the instructions to the letter (which I did with the first dose, too...guess it was just my body's initial "ACK").

    The dr. did tell me that doing an IV infusion monthly or annually would create similar side effects that would last longer since I was getting such a large dosage at one time.  Don't know if the infusion is overall better for your jawbone health or not, but have my teeth cleaning appt. on the 23rd and plan to discuss this with my dentist in depth.  I've seen him for over 10 years and really trust his judgement on that.

    Also, it is critical to take a calcium and vit. D supplement with these drugs.  My PCP recommended a minimum of 600-800 mg vit. D and 1200-1500 mg calcium daily AS A SUPPLEMENT (not just in your general diet). 

    I still think it's weird that drugs that are supposed to build bone density actually create fracture risks in some bones and you still have to take calcium to offset some of the damage they do.  Yeesh!

  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    Ysa, I took fosamax for several years once a week. Helped alittle, not much. I have a similiar diagnosis to yours. Now I am on a shot of Prolia every six months. It is given SubQ and dosen't have near the side effects that the Zometa infusion has.

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited February 2012

    I've been on Fosamax for 3 years with no SEs worth mentioning until 2 months ago when I got a terrible pain in my lower right gum. There are no molars there - had them pulled years ago and never could get used to a bridge. The dentist said the x-ray showed two old roots from years ago which are now trying to work their way out. He didn't want to dig them out due to possible bone damage so we are taking a wait and see attitude; eg if it gets too painful he will pull. 

     I was sure the pain was in my jaw and was fractured from the Fosamax. He said there was no sign of a fracture.  But I decided to skip the Fosamax for a few weeks. Guess what? the gum pain went away completely.  Last week I tried the Fosamax again and the gum pain is back. I either need a second opinion or maybe I need to see the doctor who did my hip pinning.  Hm---

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Ptdreamers--I'll hold on to your post in case my doctor recommends changing to something different down the line.  The SEs now are certainly manageable on the Fosamax, it was just that first week that appalled me! 

    Srbreastcancersurvivor--that just sounds like something from a Stephen King novel....roots trying to work their way out?  Didn't even know that was possible!  Hoping you get your gum/jaw issues resolved with a minimum of discomfort and no issues!!

  • bcisnofun
    bcisnofun Member Posts: 488
    edited February 2012

    hi all - thanks so much to all of you for your feedback.  I'm really second guessing the zometa now.  what did your Dr's think of the oral vs. IV option?  What I've read from the studies say that it doesn't do anything to prevent mets while the IV Zometa does.  But my doc thinks that some of the oral drugs taken weekly are sometimes forgotten since it's a weekly pill, so maybe that contributed to the lack of support that they too prevent mets.  Any thoughts on that?  thanks again

  • Linda1966
    Linda1966 Member Posts: 633
    edited February 2012

    I dont know about preventing mets, the whole purpose of the zometa for me was to jump in early and stop further loss of bone mass. I was 42 at diagnosis and well and truly pre-menopausal. Chemo kickstarted menopause and Zoladex injections and Arimidex over the first year seems to have succeeded in making me post-menopausal. If the onc will place me on a once a week tablet, and it doesnt cause the side effects that Zometa did, then I will make sure I take them on queue. Whats one more tablet lol

  • LouLou40
    LouLou40 Member Posts: 180
    edited February 2012

    I was 40 when dx with BC, I developed osteopenia from chemo induced menopause.

    I took Arimidex for 1 yr and developed osteoporosis, ceased Arimidex and commenced zometa every 6 months, period returned after 18 months, so now pre-menopausal again.

    Will have one more zometa to make it a total of 4 infusions, then wil monitor my BMD yearly - still have osteoporosis despite being pre - menopausal again and having the zometa, but hoping to see improvement next yr as I also run a lot.

    I tolerate zometa well, had mild flu like symptoms after the first infusion but no SE's after the last 2.

    I discussed any long term SE with my Onc before I started and decided the benefit out weighed the very smal risk of long term renal probs or ONJ.

  • Seashellie
    Seashellie Member Posts: 152
    edited February 2012
    I have some osteopenia but not osteoperosis. I just had my third infusion and it went fine. The only SE's I've had were bad for 5 days after the first one. It was like having the flu. No problem since then and I hydrate well before, during and after. I'm on every 3 months for 2 years. My Onc says its a low dose but from what I'm seeing here it seems pretty frequent. I get 4 mg each time. I'm glad to be receiving it but worry about the ONJ risk.  I just turned 47 and will be done with these infusions when I'm 48 and continue with Letrozole for 3 years after that. Then what??? I do know that calcium supplements are not really the answer. Hopefully the protective effects from bone deteriation and mets is very long lasting because I plan to be around for another 30 or 40 years and need these bones to be healthy:)
  • PLJ
    PLJ Member Posts: 373
    edited February 2012

    San Antonio Breast Cancer Symposium, Dec. 2011. Clinical Trial ABCSG-12 (Austrian Breast and Colorectal Study Group) Results here: http://www.sabcs.org/PressReleases/Documents/Gnant.pdf

    When I discussed this with my MO, she agreed that I fit the profile perfectly and said that if it was her, she'd want the Zometa, too. She made a point of saying it had to be Zometa and not another bisphosphonate. Others have been studied but have not yielded the same results.

    HTH,

    PLJ

  • mrsrobind
    mrsrobind Member Posts: 1
    edited May 2012

    I wonder if anyone can shed some light on this. I have noticed a constant cracking/popping in my back. I can be sitting still and then slightly move and it cracks/pops. It just started all of a sudden several months ago and it is just constant.  I mentioned to my oncologist who absolutely didn't have anything to say. I know I have osteopenia but it is managed and not too terrible. However, I am taking Femara - and should be done taking in February 2013. I do get iv infusion of Zometa 2x a year. I am unable to find any information relating the bones cracking/popping. I also notice in my legs when I first get up in the morning. I just turned 60 in January...I have some extra weight on me and thought maybe that's causing this but now I think it isn't related. I see my oncologist in June and I really want to have some information to talk to her about this without her dismissing. I think I have one more Zometa, or maybe she will want to continue me on it. What tests can one have done to see if its something serious? Will this maybe stop happening once I am no longer being given the Zometa? Does anybody have any ideas on this? Thanks so much. I also am post menapausal, had a oopherectomy, was er+her2+...and early stage bc. Just celebrated my 4th cancer free milestone. 

    Thanks to all, mrsrobind 

  • vacationbound
    vacationbound Member Posts: 171
    edited May 2012

    I wrote an article on the Inspire dot com page if anyone is interested-the title is Strontium versus Bisphosphonates and my friend also has one too, hers is Strontium instead of Bisphosphonates-we are both listed under the Advanced Breast Cancer Forum, just look for title in the help bar

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