zometa

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  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited July 2014

    i am post menopausal & i know that bone density @ my age is an issue in general but there are natural supplements that can be taken if this becomes an issue for me...i will have the bone density test @  my next Herceptin appt. My Onc had not disussed this with me previously & I just don't want to be pushed into the latest drug so they can generate their "statistics" . 

  • Momine
    Momine Member Posts: 7,859
    edited July 2014

    Notbuyingit, OK, good. Always better to have full info. I have researched up the so-and-so about supplements and natural approaches. I hate to break it to you that I haven't found anything yet, expect exercise.

    By the way, if you are post-meno, why are you on tamox and not femara/letrozole?

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    jumping on late I just had my first zometa infusion on wed.  My DEXA showed a Tscore of -1.6 in my hip so I have osteopenia not osteoporosis. My MO said I WILL GET OSTEOPOROSIS if I stay on the Aromasin for several years.  I have a terrible FH of osteoporosis with my mother breaking both hips, at least 5 vertebrae as well as her pelvis. My 70 yo sister also has osteoporosis but has been treated and no fxs.  

    I brought up the zometa after reading the San Antonio breast conference article. My MO had actually been there   He has researched it more and feels it is a good thing to do.  Not the standard of care but like someone earlier said may become  one. 

    My problem is my insurance has refused to cover it as it is not an FDA approved use! Bullcrap. They will pay if you already have mets but not to prevent them.

    They did get reclast (5mg dose where as zometa is 4 mg of the same med) but only one dose per 2 years.  I got 4 mg of "reclast". Not sure if they will pay for it or not since it was not the whole 5 mg.  My MO is going to try to fight for it but if not I feel strongly enough I will pay out of pocket for it every 6 months for 2-3 years. 

    Luckily I hydrated like crazy before, 60+ oz fluid the morning before the 11 AM infusion and at least that much after it. No flu like symptoms, fevers or significant bone pain.  Just the normal achiness getting out of bed first thing that I attribute to the aromasin. 

    Sorry for being so long winded.  Sounds like the rest of you got your insurance to cover  it . 

  • RMlulu
    RMlulu Member Posts: 1,989
    edited August 2014

    Crazzywabbitt - yeah :) ugh :( so hard when the AIs are so hard on our bodies...the choices.

    Glad you were able to receive the infusion of Zometa.  Your MO is on top of things and may find away to ensure insurance covers...GRRR   

    I found that staying hydrated, take a Tylenol every 6 hours helped, but I did have about 24 hrs later 12 hours of fever chills and aches.  After that fine.

    Wrestling with do I want to stay on this pair of drugs for the next 4-10 ....or play the odds...hummm

    Best Wishes to you and here's to our next DEXA scans!

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited August 2014

    i was able to get them to schedule a bone density test first - I suppose they will recommend I take it anyway - preventative & all that...

    thanks for the heads up about hydration...i have started taking Glucosamine MSM to try & help with the joint pain from both meds...already have arthritis in knees, feet & lower back  and Nueropathy so sometimes it's hard to tell what pain is "new" 

  • RMlulu
    RMlulu Member Posts: 1,989
    edited August 2014

    notbuyingit - so much to take in and understand.

    My MO required a DEXA scan prior to AI.  Suggest that I take a month break from rads before starting AI and note how my body was feeling...some of my aches or pains are just getting older and part of old injuries from running, skiing, tennis, sports and pushing.  I did not note any changes on AI :)

    At my 1st yr anniversary another DEXA scan caught the bone loss and than Zometa was discussed as a means to prevent...so here we go.  

    After your bone scan you and MO will have a basis to discuss your bodies needs. Wishing you well and keep us posted:)

  • MomMom
    MomMom Member Posts: 523
    edited August 2014


    Crazywrabbit,  My MO is recommending Zometa infusions in September, when I'm finished with rads and can have my follow up bone density.  The one from two years ago shows that I'm osteopencic and we expect that this bone density will be worse this time after 5 months of chemo.  The MO is hoping to use the new bone density results to bolster the pre authorization insurance request she will submit.  She thinks that the osteopenia will mean that they will cover one infusion a year, but not the second one.  She said that "it is not that expensive," but I have no idea of the cost.  Since you've had your first infusion, do you know how much it costs out of pocket?  If it's not totally crazy, I will definitely do this as it adds 3% to non recurrence for my aggressive triple negative, plus it's beneficial for my bones.  My last bone density shows T Scores of -2.0 AP spine, -1.3 Femoral Neck, and -1.7 Total Hip.  Honestly I have no real idea of how bad those scores are, if it was ever explained to me at the time.

  • auroaya200882
    auroaya200882 Member Posts: 942
    edited August 2014

    I hope I'm wrong but my onc business office quoted me the Zometa at $2000 USD per infusion (I'm sorry I don't know how much I'm getting in mgs) hopefully I'm wrong.

    Aurora

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    MomMom. Normal Tscore for bone is +1 to -1

              Osteopenia is <-1 to -2.5,   Osteoporosis  is < -2.5 

     osteopenia is thinning of bones but before frank osteoporosis, you are still at increased risk of fracture with the -penia but not a high as. Full blown -porosis.  What ever your lowest TScore is determine the dx. 

    No idea the price of zometa and of course the price of the infusion. Guess I will find out in a couple of weeks.  

  • MomMom
    MomMom Member Posts: 523
    edited August 2014


    Crazywabbit, Looks like I'm already close to osteoporosis in at least one category - ugh!  I've exercised pretty strenuously daily for 35 years, but am thin.  Auroaya - $2,000 Yikes!!  That's not my idea of inexpensive.  Crazywrabbit - please keep us posted.  Thanks!

  • auroaya200882
    auroaya200882 Member Posts: 942
    edited August 2014

    Well today I had my 7th or 8th Zometa infussion (who's counting?) and thankfully I feel fine , just a little heart burn, I hope those of you that decide to go for this treatment find it as easy as I have, however, everyone is different, but I still wish the best for you all.

    Aurora

  • peacestrength
    peacestrength Member Posts: 690
    edited August 2014

    Going for my 2nd Zometa infusion on 8/12.  A bit nervous because had high fever and flu like symptoms the last time but MO is adding small amount of steriod and tylenol this time.  Also have a scan and tumor makers the same week.

    Aurora - I hope to feel as good as you after the infusion :)

  • MomMom
    MomMom Member Posts: 523
    edited August 2014


    Hi Peacestremgth - Does your insurance cover the Zometa?  Thanks!

  • peacestrength
    peacestrength Member Posts: 690
    edited August 2014

    MomMom, Yes - my insurance covers 2 infusions per year.  My MO easily got it approved now that I'm on an AI...and hopefully will help as an preventative measure too.

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    peacestrength, you are lucky my insurance, Blue Cross, denied zometa since I did not have bone mets, the whole idea is to prevent them as well as protect the bones from the AIs osteoporosis effect. I have to pay out of pocket for mine. I will find out soon how much my first infusion last Wed will cost me. At least I did not have any side effects from it. I hydrated like crazy before and after.

  • peacestrength
    peacestrength Member Posts: 690
    edited August 2014

    Crazywabbit - I wish that Zometa would become standard of care so women can have a choice to receive it and have it covered by insurance.  It is irritating to me that your insurance won't cover it - I hope that changes soon.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2014

    Crazyrabbit, 

    I asked MO for it, she said no to begin with, not standard of care ( yet ), and she said my insurance would not pay. I insisted that I wanted it. She ordered & my insurance did pay. 

    Next year it will be more expensive as I will not have my deductible paid. 

    I did feel very tired & achy for 2-3 days, but nothing compared to all the other tortuous treatments. 

  • MomMom
    MomMom Member Posts: 523
    edited August 2014

    Crazywrabbit,   Was your Blue Cross federal employee or some other kind of BC? My primary is Medicare and secondary is fed BC.

    Hole in one, that's great!  Your MO must have written a good justification.

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    MomMom. My BC is a self funded plan, administer by BC, for the health system I work for.  I have to wait 5 more years for Medicare, if it is still there by then and still covering cancer treatment. 

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited August 2014

    Hi all, I recognize a few of you from other threads. I have osteoporosis and osteopenia. 

    I am going to ask my MO about Zometa when I see her next month. Of course, we all read Dr Google and I see articles saying bone loss increases risk of bone mets....so I am concerned, to say the least. Walking, walking, taking my Vit D/Calcium supplements...but, is it enough???? 

    I wonder if Claritin would help with joint pain from the Zometa infusion, as it does for the Neutrogen(?) shot after chemo. Sorry, can't remember it's name...blaming it on chemo brain! 

    $2k is not inexpensive to me either. 

    I don't understand why those with bone loss are on Als....? Other risks from Tamoxifen? Is an Orthopedic Dr more versed in this than an MO? Anyone been to one? 

  • MomMom
    MomMom Member Posts: 523
    edited August 2014


    Crazywrabbit,  My husband & I are both retired feds, so generally our BC has good coverage, although since we are Medicare as primary, we see from the statements that Medicare is footing the lion's share of the payments.  I'm hoping it will still be around forever!  We are both SO grateful for it.

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    Keepthefaith, I have mixed lobular and ductal, the studies suggest that tamoxifen is not as effective as th AIs on lobular.  Also I have dealt with endometrial polyps and do not want to go through bleeding issues and the increased uterine risk from tamoxifen.  

  • auroaya200882
    auroaya200882 Member Posts: 942
    edited August 2014

    keepthefaith, I've been to an orthopedic surgeon. Last year I broke my right leg femur, but when he opened me up he found bone mets. If there is no cancer in the bones I would trust the orthopedic MD but with the cancer anything that shows on the x-rays is not clear if it's arthritis, osteoneopenia, osteoroporosis or the cancer so I trust my oncologist more. Zometa is for bone strenghtening and in some studies it has been shown to prevent mets. I take zometga once a month and have no se's but everyone is different. Good luck!

    Aurora

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited August 2014

    Thanks Ladies....very helpful information! 

  • otinaz
    otinaz Member Posts: 4
    edited August 2014

    I have been on Arimadex, Femara and now Aromasin, Loopythe latter with the fewest side effects for me. We all respond so differently.

    I will be done with the 5 years next April. I have lost additional 9% bone since my last DEXA scan (2 years ago) still in osteopenia territory but don't want that to go any further. Zometa infusion is scheduled this coming Wednesday, the 6th of August. I, too was very hesitant to go for it, but I don't want to have more bone loss. I had a patient tell me about her severe side effects a day or so before my doc gave me the recommendation so, just at the wrong time.

     I heard about the keeping hydrated and taking anti inflammatory before and after treatment. I am scheduled to work the next day so hopefully no side effects. 

    I am checking to see if any of the discount Zometa coupons I found on line will help with the costs. I have a high deductible. Check them out to see if your pharmacy will honor any for you- I was able to print out 3.

  • RMlulu
    RMlulu Member Posts: 1,989
    edited August 2014

    otinaz - congrats on being so near the end of AIs! 

    When you go in to receive your infusion ask if they will run the drip slow...45 min...with plenty of saline/hydration ...I drank about 5-6 glasses prior to infusion and every hour the first few days plus Tylenol every 4-6 hours.  I was able to jump a plane and fly 2 hours after infusion.  Everyone is different...expect the best and be proactive...hopefully Zometa infusion will be a nonevent, costs low, and helps  bones!

    Best Wishes

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    GoodRX.com has discount coupons but my infusion center does not allow you out to bring in outside medications. 

    I had no side effects to the zometa I got last week. I drank 2- 20 oz glasses of water and 2 cups of coffee over the 2-3  hours before and  lots the day afterwards afterwards.  I popped a few advils at bedtime, just in case, but probably did not need them. 

    Hydrate well and good luck. 

  • JDee23
    JDee23 Member Posts: 1
    edited August 2014

    Just had my first infusion of Zometa this morning and thank all of you for your comments here. Recommendation was made due to Her2+, taking Arimadex, and family history of osteo issues. I started Arimadex in May this year after 2 on Tamoxifin and have experienced no great side effects with either, but reading of Zometa possible flu-like symptoms reminded me of chemo. Ugh. 

    RMlulu, I was thankful that my drip was 30 minutes and prepared prior with plenty of fluids continuing  into the evening.  I have felt a little queezy, but very happy nothing intolerable. Recommendation of Tylenol taken and praying tomorrow goes just as well. Appreciate the input! 

  • MomMom
    MomMom Member Posts: 523
    edited September 2014


    To all those considering Zometa and concerned about the possible out-of-pocket cost should your insurance not cover two infusions a year.  I recently had a follow up bone density.  It was two years since my last one.  One # went up a tick and the other two #s went down!  I was pretty amazed at that, as I expected chemo to weaken my bones.  However, I'm still classified as osteopenic so I'm hoping that my insurance will cover at least one of the two Zometa infusions per year.  Just heard from my MO's office and the total charge for one Zometa infusion is only $340! Not that $340 isn't a chunk of change, but it sure beats the $2,000 per infusion price someone posted earlier!  The billing person said that the cost is much lower since a generic version of it has been around for a few years.

     

     

  • RMlulu
    RMlulu Member Posts: 1,989
    edited September 2014

    yeah, Mommom...$340 vs $2000 big difference 

    Good News!

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