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Has anyone refused or stopped Xgeva and Zometa??

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nicolerod
nicolerod Member Posts: 2,877

I want to stop Zometa. I think the long term side effects can be much worse than the positive effects. I have 2 bone mets (I hope, just had bone scan today) I read from a girl on FB today she broke her neck just rolling over in bed. She has been getting Zometa for 3 years..she said she was told that its like cement and eventually just like cement crumbles so does our bones from it... I just don't see the pro's with this??

Any thoughts?

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Comments

  • uppersouth65
    uppersouth65 Member Posts: 3
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    I no longer get either. I'm 5 years in and it was wrecking my quality of life....

  • JFL
    JFL Member Posts: 1,373
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    I slowed down the frequency of XGeva (competitor drug) after a few years and recently took a short break. I am bumping up against some of those long-term side effects now but am worried about stopping completely based on the extent of my my original bone mets. However, if I were in your position with only a few small bone mets, I would feel more comfortable stopping. I don’t know about Zometa but XGeva is thought to help prevent bone mets or progression of mets by a small percentage. However, the declining quality of bone over time due to these medications does concern me. If the body is prevented from going through its ongoing resorption / remodeling process, the bone is not going through the cleaning up, healing and fortifying stages. A bit scary when one thinks about it

  • nicolerod
    nicolerod Member Posts: 2,877
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    Yea I stopped and told my MO.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,961
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    I was on pamidronate, an older bone strengthening drug, for a couple of years after dx. My mo is the one who took me off of it as she was concerned about spontaneous femur fractures. I will meet my new mo in February and revisit the issue. I do have some osteopenia but am unsure about whether short term use of a bone strengthener will help

  • olma61
    olma61 Member Posts: 1,025
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    On Xgeva, too scared to stop for very long but am on hiatus since Sept 10th for my dental work. Will probably resume in March so abt five months off. Was supposed to be getting it every 9 weeks at this point.

    After we went to quarterly, I had a "relapse" maybe a coincidence or maybe not.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Olma...a relapse of what???

    Also do you have extensive bone mets? In the research I did ...people with EXTENSIVE bone mets or Painful bone mets were the ones that would benefit from it more...

  • olma61
    olma61 Member Posts: 1,025
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    By "Relapse" I mean -- I was NED and after changing the XGEVA dose to quarterly for six months, my next PET showed activity in L1 again. Had radiation and was NED again as of Sept. Next scan is April.

    The onc doesn't necessarily think that met lighting up again is related to reducing the Xgeva dose, but doesn't rule it out. We went to doing the XGEVA every 6 weeks again and then my dental issue happened. So most recently, I had been off Xgeva for four months but had a shot again last week.

    At diagnosis my mets were described as "moderately widespread" both lytic and sclerotic ....without looking at my report I had at least 8 sites that I can think of off the top of my head, several in my spine (maybe four or five?) Not terribly extensive, but not just one or two.

    I've never had pain, even before treatment.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Oh ok...I know there is no evidence that any bone strengthener can help prevent the spread of the disease or prevent it so that was another reason I declined it.

  • goldie0827
    goldie0827 Member Posts: 6,835
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    Not sure how long I have been on Xgeva, several years tho and I still get new bone mets when I have scans. Take my injections monthly. Who know what we should and shouldn't do!

  • sbaaronson
    sbaaronson Member Posts: 121
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    Nicole,

    I fought my MO on this drug for some time, I have only had 2 shots. I do not have extensive Mets, nor was I in pain, however Moomala a fellow poster told me that she has had fractures that keep her from exercising. I am a runner and hit the gym 6x a week. If/when something happens that takes that away from me, it will be devastating, ergo I am doing the Xgeva. My plan is to see if it has had any impact on my next bone scan. I will say that one of my TM’s dropped my 20 pts after the first shot. Coincidence, who knows?

    I don’t understand why I have to get it monthly and some others get it less frequently?!


    best,

    Stacey


  • olma61
    olma61 Member Posts: 1,025
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    I have read that Xgeva may have some anti-cancer effects, I believe it has to do with creating a less hospitable environment for bone mets to take hold, more than just strengthening bones after damage. I don't know how well studied that is, maybe it is just speculation.



  • nicolerod
    nicolerod Member Posts: 2,877
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    Yup there is no literature at all to show it stops or even prevents cancer. After seeing the poor young women on FB in hospital beds with broken necks because there bones are now 3 & 4 years later just crumbling from the Xgeva..and there oncologist even told one of them that it is from that...they said "think of it like cement eventually it crumbles away".... Since I do not at present have extensive or painful mets ..no thanks I'm good....

    I also go to the gym...and hike and bike...why do I need xgeva if I am able to do all that? It will not prevent bone mets from spreading...if someone has fractures that means there mets have ate through the bone or their fracture can actually be caused by the Xgeva if they have been on it for more than a couple of years.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    hi! I’ve found bestbirds guide to mbc very helpful with info on these medications.

    It was in her guide that I discovered that I could, after one year, switch from monthly xgeva injections to quarterly.

    I brought it up to my MO team and they were fine with it. So I get it only 4 times a year now instead of 12 times.

    I had extensive bone Mets. No pain at time of diagnosis but malaise.

    My MO has told me that the research shows that xgeva does have anti-cancerous effects and for me, he explained the situation as: since you’re not in pain yet, we want to get on top of the bone cancer as best we can. Because you don’t want to get into the realm of bone Mets pain. He said it is tough to treat the pain and not a good time. I trusted him on this and hence I am on xgeva now for almost 3 years and haven’t thankfully had any major issues.

  • olma61
    olma61 Member Posts: 1,025
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    Stacey - with Xgeva, currently, many MOs are giving it monthly for the first year, then tapering it to quarterly after that. This is to try to avoid osteonecrosis of the jaw and the other serious side effects.


    LoveFromPhilly, yes, thats what Ive heard too, also that Xgeva is generally seen as somewhat more effective for BC pts than Zometa.

    Goldie, I agree, it is hard to know which course to take, also to sort out what drug is causing side effects when we are on so many.


  • nicolerod
    nicolerod Member Posts: 2,877
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    Yes Olma ref Side Effects bc we take so much. Philly I have to disagree with your MO...after seeing people with broken backs and necks unless I had extensive bone mets or pain...I wouldn't take it...its not worth the risk to me...and in addition to that ONJ but hey, thats just me. :)

  • illimae
    illimae Member Posts: 5,622
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    I was on Xgeva every 6 weeks for about 2 years. Last March my MO said I had reached a point of maximum benefit from the drug and would stop. I had no significant SE’s from it and have remained stable with minimal bone mets so far.

  • olma61
    olma61 Member Posts: 1,025
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    illimae, good to know, thanks. I was doing the six week schedule due to my Herceptin infusion schedule, probably the same reason you did, correct? I was once a month for the first four months, then every six weeks after finishing taxol, then quarterly, then back to six weeks and then I stopped for four months.

    If things continue to go well for me, I may ask to go off it completely, because I need more dental work if I am going to be hanging around for awhile. :-D

    But I guess I will finish out this year with quarterly shots since my onc wants that.



  • olma61
    olma61 Member Posts: 1,025
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    Also, Nicole, you make a good point about exercise. Women without cancer but at risk for osteoporosis are told to walk or exercise to build bone. So if we do that and are not having lots of issues with mets, or abnormal calcium etc why take this indefinitely.

    I wonder about getting a bone density test, if that would give any useful information. I also wonder why we don't get our hormone levels tested when we are using anti-hormonals - a separate issue I guess, but perhaps related to bone density.

    Maybe some people do get these tests as part of BC treatment. Anyone?

  • nicolerod
    nicolerod Member Posts: 2,877
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    My new MO was testing hormone levels but now I got my ovaries out...

  • Moomala
    Moomala Member Posts: 397
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    I'm only a testimonial but I do now take Zometa infusions. As Stacey said i was a gym person 5-6 days a week ( cardio, yoga and weight lifting) and I can no longer do much exericise at all due to fractures from osteopenia and cancer. When i was first dx with osteopenia I adjusted diet and exercise and was stable osteopenia for years. I made a choice not to take bisphosphonates and it was absolutely the wrong one for me. i had a gut feeling that bisphosphonates would be wrong for me but I was the one who was wrong - and I am absolutely paying for it now. Next time I'll go with science.

  • olma61
    olma61 Member Posts: 1,025
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    thanks nicole...maybe they only test pre-menopausal women.

  • nicolerod
    nicolerod Member Posts: 2,877
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    Olma yes...actually I believe that is the case because I remember my MO saying something along those lines :)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,961
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    Olma,

    My mo had me do bone density tests 2x in the past 8 years. As I mentioned, I was on an older bisphosphonate, Aredia, for about 2 1/2 years. The bone scans are what picked up my osteopenia, however my mo was most concerned about se’s that might show up after prolonged use. She particularly was concerned about spontaneous femur fractures because of the way these drugs build bone which is very different from how we build bone strength naturally. Still, I sometimes wonder if I should go back on one of them, though my bone met is literally that, a single met. Will be meeting my new mo soon and it’s on my list of things to discuss.

  • illimae
    illimae Member Posts: 5,622
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    Olma, yes, the 6 weeks schedule was due on alternating H&P infusions. Side note, I’m a needle phob, so I was happy to drop it, like really happy 😬

  • olma61
    olma61 Member Posts: 1,025
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    Thanks for sharing your experience and insights, everyone!

    Heart

  • lillyishere
    lillyishere Member Posts: 773
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    I have refused Zometa. I am not sure if I am doing the right decision but being on letrozole + lupron, side effects are overwhelming. I will have ovaries removed next month to get out of lupron shots. MO said that Zometa will give me 1% chance of cancer not coming back.

  • olma61
    olma61 Member Posts: 1,025
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    Here's an article I found that mentions possible anti-cancer effects of Xgeva but it is behind a paywall. I might pay to read it if I can't locate a pdf online.

    https://www.ncbi.nlm.nih.gov/pubmed/21874289

    Xgeva and Zometa are different types of drugs. Xgeva is a monoclonal anti-body (inhibits RANKL ) Zometa is a biphosphanate. they both are bone strenghteners but act in different ways.

    Xgeva is cleared by the body much more quickly than Zometa but you can still experience side effects years later with both.

  • nicolerod
    nicolerod Member Posts: 2,877
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    The few women that I spoke to on facebook 1 whose neck broke and one whose back broke both took Xgeva...not that it makes a difference to me.

  • forza
    forza Member Posts: 144
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    Hello :/ Similar thoughts here. I’ve been told to start monthly Xgeva but I don’t really want to. I’m not a scientist so don’t understand how it strenghtens bone but also ruins your bone at the same time.

    I’m waiting for my next scans and another chat to my top dog oncologist instead of one of his minions (sorry oncologists in training).

    I’m now also starting to be scared about doing any exercise...

  • nicolerod
    nicolerod Member Posts: 2,877
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    Forza...I believe how some explain how Xgeva works is to think of it like cement...it goes in and inflitrates in/around the bone to make it strong....but eventually cement breaks down...and when it does it crumbles apart or breaks apart. So that is what happens in your bones.

    I only did 1 injection of Xgeva and got hives...I then 3 months later got Zometa..and then 3 months after that another Zometa. Then I started seeing women on FB that had been on these 2 drugs (mostly the ones I met had Xgeva, but it doesn't matter they do the same thing) and they had been getting these injections monthly or every 3 months for a couple of years...generally more than 3 years...and they were having horrible experiences with broken neck, vertebrae, back...etc.. and their MO told them it was from the years of Xgeva/Zometa.

    People with painful, or extensive bone mets...sometimes for them this risk definitely out weighs not taking it....but for me..I do not YET have pain (that keeps me from functioning) or Extensive bone mets so I spoke to my MO told her what I thought and that I researched and NO WHERE is there any evidence that those drugs prevent or heal bone metastatis ...and she agreed...and said I can put it on the back burner for now.