Zometa/Xgeva -pros/cons/side effects and decision

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naturegirl2
naturegirl2 Member Posts: 332

I was diagnosed with stage 4 BC with bone metasis Nov. 2012.(nodules in lungs/spot on 6th rib/tumor on sternum)  I've been on Letrozole for 2 months.  I have my regular monthly appt. tomorrow with my oncologist.  He did mention back in Dec. possibly prescribing Zometa or Xgeva(and handed me literature to read on both drugs but did not say 'when' I need to begin treatment.  He hasn't ordered a bone density test of yet.  I want to be prepared for tomorrow's appt if he needs an answer from me as to my decision in taking Zometa or Xgeva.  He did mention Xegeva is quite expensive.  I'd like to know at what point your oncolg. put you on Zometa or Xegeva, if you were given the choice, benefits/side effects of Zometa, benefits/side effects of Xegava as well as cost of either one.  Thanks 

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  • karody
    karody Member Posts: 89
    edited February 2013

    I got a fever and felt like I had the flu for three days after my first Zometa infusion a couple of years ago, but have never felt like I had a side effect since.  My doc said that was normal, but it did stink.  The upshot is that my DEXA has improved my scored from the "osteoporosis" range to the "osteopenia" range.  I am only 38 and broke my arm badly last year so I understand why that is a big deal Laughing.

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited February 2013

    wow karody, glad Zometa helped you.  How often to you get the infusions, and, are you still on it?  Also, how costly is the med?  Do you take the generic(Zoledronic Acid)?  Anyone else, feel free to chime in on your experience of either drugs, i.e. side effects, how long and how often, and cost.

    Thanks

  • pupmom
    pupmom Member Posts: 5,068
    edited February 2013

    Naturegirl, I've been on Zometa every 3 months for a year. I just had the flu like symptoms the first 2 times. Otherwise, no se's. You can combat the flu symptoms by taking Benadryl and ibuprufen (sp?) before and after treatment. My MO said I'll be getting infusions for another year.

    Edit: There's been no cost as insurance covers the treatment.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2013

    I receive Prolia (same active drug as Xgeva) injections every 6 months to combat accelerated bone loss from aromatase inhibitors and chemo -  I was osteopenic prior to diagnosis, and had a pre-treatment bone density scan.  I have had two injections - the third will be this week - and have had absolutely zero side effects.  My insurance has covered the cost, aside from the co-pay for the office visit.  Here is a link to financial info and patient cost assistance:

    http://www.amgenassist.com/support_programs/prolia_support.jsp?info=false

  • karody
    karody Member Posts: 89
    edited February 2013

    I am pretty sure my doc uses the brand name (Zometa), but I am not sure.  The first year she had me do infusions every 3 months, but since my DEXA improved so much, I am just on every six months now.  Also, she says it will help prevent metastatic tumors in the bones.

  • Chickadee
    Chickadee Member Posts: 4,467
    edited February 2013

    I was started on Zometa. I think Xgeva was just coming out. Hated the infusions and the time it took for the process. When I changed to treatment closer to home the onc agreed Xgeva would be fine. Quick shot and I'm gone.



    The first Zometa shot can knock you on your ass for about 24 hours of awful flu like symptoms. The second one I was fine. I have never noticed anything I would ascribe to the Xgeva other than stinging where the shot went in.



    As for cost, that's going to depend on your health/prescription coverage if you have any. I noticed on my plans web page they claimed the monthly cost was over $2200 per shot of Xgeva. I had a low co pay thankfully.

  • slousha
    slousha Member Posts: 312
    edited February 2013

    Hi SpecialK,

    Did your bone density improve on Prolia?

    Best Usha

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited February 2013

    Thanks everyone for your info.  Chickadee, how long does it take to have an infusion of Zometa?

    Did your oncol. tell you to take Vita D & cal along with taking Zometa? I did read one must take Vit D & calcium supp. while taking Xgeva but I did not read you need to take those vitamins while on Zometa.  Is this correct?  I did not like what I read as a rare, but still, a side effect of Xgeva, was death.  Others?

  • Chickadee
    Chickadee Member Posts: 4,467
    edited February 2013

    Initially my first onc mentioned calcium but not D. The time problem I encountered was more the process at MD Anderson. You see the onc., he orders the infusion, there is a two hour window before they would check you in. Then you had to wait for the IV placement, go back to the window and wait for a room........you get the picture.



    The actual infusion was about 30 minutes. I had read that going faster than that made the SE's nastier.



    I believe that it's recommended to take Calcium and D3 with any of the bisphosphanates.

  • MarshaMay
    MarshaMay Member Posts: 95
    edited February 2013

    As soon as my scans showed a bone met my onc put me on Xegeva. It took her a while to persuade my ins co of the benefits, they wanted Zometa, but she had the research on her side. It is an easy shot once a month. Since taking it, I've upped my D and calcium supplements.

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited February 2013

    Thanks Chickadee & MarshaMay,

    I had my monthly oncol. appt. yesterday.  My cancer antigen levels went from 89 to 71.  My oncol. was pleased.  He also examined me and said had he not known I had a tumor on my sternum(was quite visual) he would have never known I even had the tumor.  He was pleased and said he wants to see me in a month (along with more blood work) and would want to wait til April for a cat scan as it will show a larger picture as to what is going on.  He did not mention Zometa or Xgeva.

  • MarshaMay
    MarshaMay Member Posts: 95
    edited March 2013

    Forgot to mention, because of risk for jaw bone disease it is advisable that you complete ant major dental work prior to starting either of these Rx.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2013

    slosha - I don't know yet because I have not had another bone density scan.  My onc did say it can take a couple of years to improve, but I would be satisfied with no further loss, keeping me osteopenic, but stable.  I will most likely not have a scan for another 6-12 months.

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited April 2013

    During my last visit with my oncol., he said he would like me to begin Xgeva shots in May, after he sees me in May. I am still taking Letrozole daily since Dec. 6th of 2012 and will continue indefinitely.  He did recommend Xgeva rather than Zometa as he said it's in shot form, rather than IV.  My next appt. with my oncol. is middle of May so soon after that I begin shots.  I asked him if I needed to take Calcium and vit D and he said no but that my calcium levels will be checked each time before each shot.  Xgeva users, please step up, I would like your input, what side effects you have had, tips etc. etc. please.

  • doxie
    doxie Member Posts: 1,455
    edited April 2013

    I'm not getting Xgeva, but am getting Zometa, so you'll need more help on this.  

    My MO was really concerned about a drop in calcium in the blood in the days after the shot.  I was told to up my calcium intake and take a couple of Tums if I started to feel light headed or ill.  The drug pulls calcium out of your blood into the bones, so can cause serious problems if you don't have enough. I noticed more muscle cramping/pain in the next month, so always made sure I didn't skip my calcium.  I was taking about 2000iu Vit D, plus the D in the 1500mg Calcuim pills.  I don't take as much calcium now.  

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited April 2013

    hi doxie, thanks for responding!  I read Zometa was given only by way of IV.  Did you once take an Xgeva shot?  Why did you decide Zometa rather than Xgeva? How long have you been taking Zometa and  for how much longer?  Sorry for all the questions.

     It's been six months since initial diagnosis of stage 4.  So now my oncol. wants me to use Xgeva come May visit.  I have reservations and a bit nervous about this.

    Others?  Xgeva users, please step forward and participate here.  Side effects?  People who have passed on taking Zometa/Xegeva, regrets?  Thanks!

  • MemaSue56
    MemaSue56 Member Posts: 2,129
    edited April 2013

    Hi Ladies!

    I was IV w/bone mets outta of the box...have been doing Xgeva shots once I was thru with CTH in Sept '11.  My onco never did discuss options between Zometa and Xgeva...so this is interesting reading.  I finally got a BASE bone density a year ago...will be getting another in May.  I was 'pinia.  So I was happy.  We will see what the next one says.  And someone mentioned the dental/jaw se of xgeva...true...so I also took the info to my dentist, she is now informed and will keep an eye on me.  But I was ALSO told to get any dental work done B4 I started it.  I don't have any se's from Xgeva, or at least that I can blame solely on those shots.  Speaking of the burning/stinging....sometimes it does and other times it does not....and the diff for me is the NURSE who injects it.  In my chemo pod, some of the nurses are rotated in/out like a revolving door and after almost 2 years..I thot it was the norm (stinging), but it is not.  Ask them to slow down the push and mayb find a 'more' fatty area in the stomach.  I have lots of that...lol...but truly, the nurse that pinches up a bit of bellyfat...makes the shot much more tolerable. OO  and I started on 2000iu of D...got bloodwork done sametime as my density....tooo much D....so quit that but try to keep up with the calcium.  I live in sunny climate, so I try not to wear sunglasses too much.  D is absorbed 'most readily' thru the eyes.

    Hope this helps!  Love, prayers, positive energy to all,

    Sue

  • doxie
    doxie Member Posts: 1,455
    edited April 2013

    naturegirl2,  I have only had Zometa once and it was by IV.  I've been on and off and on AIs because of eye SEs so my MO was waiting to give the second infusion only after it was clear I would need it.  I've been really on the fence over getting it for osteopenia only, so I've not reminded him.  He insisted because I have really bad family history of osteoporosis.  My plan is to hold out for the next DEXA in 6 months.  I think Zometa was what ins would cover with no bone mets, so Xgeva wasn't considered.  I will probably need Zometa as long as I am taking an AI, unless I have a good DEXA.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    My MO started me on Xgeva in December 2012 shortly after my bone mets dx. He never even suggested zometa. I always receive the shot in the back of my arm and the nurses always gently pinch it so it goes into a fatty area. The shot is also pushed slowly and I have never had stinging or soreness.



    I am one of the rare folks who consistently gets side effects but they seem to vary in intensity. Usually they begin about 36 hours after the shot and I feel like I have a mild flu (full body aches, more fatigue than normal, but no nausea) for a day or two. The nurse and MO both said the timing of the symptoms coincide with about when the injection would have had time to circulate systemically. They were the worst after the first injection and have never kept me from doing whatever I need to do, but now I do plan around them a little so I can take it easy if I need to (i.e. I get the shot on Thursdays so I have the weekend to be lazy if necessary).



    Coincidentally, I happened to have had a bone density (DEXA) scan a month before my BC dx. so already knew I had osteopenia bordering on osteoporosis. My next DEXA will be later this year. My dentist is aware of the Xgeva and has discussed a long term plan for preventing any dental issues. My MO didn't mention a pre-Xgeva dental exam and necessary work, but should have. I have had no jaw issues or pain thus far.



    Both my MO and the drug manufacturer's literature recommend a calcium supplement of 500mg. a day, and low blood calcium is a listed side effect. At my MO's request, I also take 2000 i.u. of D3 to offset my below normal levels. My levels have risen from 20 to 30 in about four months, but they want it to be no lower than 40 to 60. I hope that more outside time will help now that spring is here.



    BTW, the manufacturer of the shot has a payment assistance program that my cancer center enrolled me in. It offsets my out of pocket costs by paying for the balance, after insurance and my office visit copay. Since my cost would have been about $400/mo., I was very grateful to the center for enrolling me!



    Hope this helps your decision.

  • raysnbucs
    raysnbucs Member Posts: 74
    edited May 2013

    I too was Stage IV it hbone Mets, right out of the box, ho ever it took some pretty extensive unwrapping of the box to discover that little tidbit. I as put on Xgeva with no talk about Zometa. I had the first shot on the 29th of April, and radiation the next day to the L3 area of my back, since that is where my mets had settled. On the 1st, I started to have hip pain, in both hips. Something similar to if I would have ridden a horse for long hours. Now by the 5th, it is effecting my ability to sleep straight through the night. Because this is so new to me and the two treatments were so close together, I can't say which of the two caused the pain. I just know it was one of them, since I have never had hip problems before. 

  • diana50
    diana50 Member Posts: 2,134
    edited May 2013

    I was dx with bone mets 10 and half years after initial dx. My Tx is monthly zometa and letrozole. 24 hours after zometa infusion I get huge bags of fluids. My Onc believes zometa is a great drug for bone mets.

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited May 2013

    Thanks everyone for your input!  I have taken notes!  Mema, glad you did not have SE's in taking Xgeva!  Some ray of light for me as I haven't taken my 1st shot but will May 16th.

    Ysa, thanks for your input.  Good to know you have had no problem with shot in back of arm, pushed in slowly. Sorry you have SE's from Xgeva. :( $400. a month for shots, oh wow, hmmm.  And this is after your insurance write-off, and insur. payment?  Whew, little concerned here. hi rays, thanks for your input.  Sorry you are having some difficulty.  Wish you knew if from radiation or shot and Stage IV with mets out the box, sorry honey.

    diana, you seem to be doing well with have bone mets some 10 years ago.  That is encouraging. 

    It is interesting to me my oncol. did not recommend Vit D or Cal supplements and I confronted him with this too.  He did say before the person gives the Xgeva shot, they will test to see what my calcium levels are.  I have not had a bone density test either.

    Well y'all wish me luck with my upcoming shot.  I really am a bit nervous about getting the shot and hoping I have no SE's. 

    If there is anyone else who wants to offer info on Xgeva shots, please step up.  Others?

  • NickyJ
    NickyJ Member Posts: 722
    edited May 2013

    I too was dx stage IV right from the start. While on chemo, from end August to march this year, I had zometa infusions once every 3 weeks. The first infusion was put through in 15 minutes. My head was spinning for a week! I felt really off, like my blood pressure had dropped very low. I told the onco about this, he recommended trying pushing the infusion over 45 minutes. I tried this, and never had any more problems. Once chemo was finished my onco changed me onto xgeva once a month. He gave me a prescription for vit D and calcium at the same time as the prescription for xgeva, telling me that its important to take them every day. So far I've had 3 shots with no problems or se's. Hope this helps!

    Nicky

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Yes, the $400 was post insurance and co-pay but the makers of xgeva have the write off plan that will pick up the difference if you apply. Definitely look into it. My cancer center was all over it and got me signed up.

  • naturegirl2
    naturegirl2 Member Posts: 332
    edited May 2013

    thanks Ysa.  Okay, had my first shot (in stomach) of Xgeva last Thursday, no side effects, yeah, I'm so glad.  I did read some people have had side effects after 2nd shot?  Input please.

  • Melwilliamsrod
    Melwilliamsrod Member Posts: 2
    edited July 2013

    My 1st post here. I was diagnosed with stage III b in 3/2006. I just turned 40 years old and in 5/2013 I was diagnosed with Stage IV Bone Mets. I just started Xegeva and Lupron. I am miserable. The pain in my bones, facial pain, and electric like shocks are almost unbearable. My Oncologist wants me to try three cycles to see if it settles down. I am literally missing work. Anyone else had these symptoms?

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