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XGEVA let's talk about the good and the side effects

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  • dlb823
    dlb823 Member Posts: 2,701
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    For what it's worth -- when I saw my UCLA onc on Monday, she told me she is changing her Xgeva dosing recommendations because of new, still anecdotal observations about Xgeva possibly being a bit more likely to cause ONJ for those of us who are able to stay on Ibrance for a long time. I won't elaborate here -- mostly out of respect for not sharing what sounds like a brand new observation. But feel free to PM me if this is something you want to know more about. She did change my dose schedule, as well as stressed the importance of flossing and getting cleanings every 3 mos.

  • cive
    cive Member Posts: 265
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    My MO has me on every other month Xgeva and says after a year, we'll probably move to every 3,4 months. I'm thinking they are starting to think that less can be better. Maybe same results with less problems.

  • jensgotthis
    jensgotthis Member Posts: 671
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    thanks fOr sharing thoughts about dental procedures while on Xgeva. The nurse at in my Onc's office was saying that it may be possible to stay on Xgeva for five years - I was surprised and I lab to ask my Onc as maybe that is wrong or follows a multi month dosing schedule vs monthly. Happy to share what I learn

  • HLB
    HLB Member Posts: 740
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    I just saw this thread so I thought I would share my experience. Been on xgeva for 4 yrs now every month with no signs of stopping or reducing according to onc. I had extreme fatigue with the first 2 or 3 shots for one day, and after that no noticable SE. I recently had a root canal/crown with no problems. My onc says this drug prevent cancer from growing. I am a little concerned about the long term effects I asked him about 2 years ago if I should go to every other month but he said no. He's very big on this drug.

    There is an oral care protocol I found about that I experimented with for 6 month now. You can find it by searching for "Dr Ellie". My last cleaning went well and was slightly improved from the last one. What I didn't tell them was that during those 6 months I hardly ever flossed! That is part of the protocol, that you don't need to floss and she thinks it can damage gums, but I will go back to flossing anyway now the experiment is over. Basically you do this morning and night: rinse with Closys, brush with Crest Anticavity (no glycerin), rinse with Listerine, then rinse with Act..05 percent flouride. Then you eat zylitol mints or gum throughout the day, esp after eating.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    I am getting my first xgeva on June 1st. My dentist recommends quarterly cleanings (I'm going to do this). He also is a big fan of all of the biotene products and recommended that if you chew gum to chew the biotene gum.

    OK, is the injection going to hurt? I am a big baby when it comes to needles.

  • dlb823
    dlb823 Member Posts: 2,701
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    Purple, my experience has been that the med stings a bit going in, but the needle itself doesn't hurt. I get mine in the back of my upper arm. I tried it one time in the tummy, and I had much more aching in my legs for a few days afterwards. Could have been coincidence, but I strongly prefer it in my arm.

  • HLB
    HLB Member Posts: 740
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    I prefer the arm too. Just tell them to do it slow and it won't hurt. Like 10 seconds. I get teeth cleaned 2x per year and so far no problems after 4 yrs of getting the shot monthly. I'm grateful to have no se.

  • dixiebell
    dixiebell Member Posts: 170
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    I prefer my tummy. It really does not hurt. I usually am tired a bit for a day or two but no real side effects for me.

  • cive
    cive Member Posts: 265
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    Piece of cake every other month.

  • pajim
    pajim Member Posts: 930
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    It's a small needle. At least compared to the Faslodex shots. (No really, it's a small needle) All my side effects are attributed to all the other drugs I'm taking.

  • jobur
    jobur Member Posts: 493
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    Deanna, Has your UCLA onc ever mentioned how long you would have monthly Xgeva? My mo was not aware of any studies comparing outcomes for monthly shots vs. every 3 months. I know there are clinical trials on this for Zometa.

    Pajm, Have you ever heard of any clinical studies on Xgeva, other than those comparing it to Zometa?

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    I have seen a lot of different dosing schedules for people for xgeva, which is interesting. I will be getting it every-other chemo, or every 6 weeks...

  • dixiebell
    dixiebell Member Posts: 170
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  • melmcbee
    melmcbee Member Posts: 371
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    I just found this thread. My mo wants me to start this in a month. I am looking for any tips about mouth care and what vitamins di you take. I bought a multivitamin and calcium 600mg with d3 800 iu. What do I need to take. Any suggestions would be great. Thank yo

  • micmel
    micmel Member Posts: 9,924
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    Mel~ I also take vitamin d 2 caltrate a day and one b12. Last time I went my blood work was perfect for vitamins and my onc told me to keep up what I was doing. The thing about the XGeva shot for me is. I take Aleve and Claritin at least three days before. (I take Claritin everyday for joint pain and any possible inflammation the medication may cause me) I load up on those things because the side effects without it are not too enjoyable at all. I had extreme joint pain in my legs and groin area and pain medicine was a must. I also felt extremely tired and I had a dull headache that's usually lasts for two days or so. It is a strong shot! I wish someone would have told me. Because it's really pretty awful when it hits you the second day usually after theshot has been given. It can be a bear. It's a good treatment and I wouldn't not take it. But just be aware. I hope you do great ! ~M~

  • melmcbee
    melmcbee Member Posts: 371
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    Thanks Micmel. I still have a headache.

  • cive
    cive Member Posts: 265
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    I look forward to my injections of Xgeva since I swear I have more energy for about a week after getting them.  I've had no side effects other than that.  I take 500 mg CA caltrate, 250 mg D, and 250 MG since the calcium makes me a little constipated and the magnesium fixes that.

  • micmel
    micmel Member Posts: 9,924
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    I am ready to have XGeva and blood work may 3rd! Ugh!! The may 5th CT scan oh how delightful, then may 12th visit the onc for results. Such a thrill. No,more like a huge PITA!! I haven't scanned in 6 months. Onc said blood work great every time. Never concerned once. Tumor markers plummeting. But I realize some other oncs don't even pay attention to them. But mine seems to. I will say he has never been wrong before with what he had told me . I guess that could even be good and bad ! The good part is, everytime I see him, He says how Well I am doing and my blood work is promising , and that he thinks ibrance is working! But then I remember his voice telling me those damn statistics. Which make me mad ! Its an up and down journey. I had some teeth work done this week and had a Panaramic X-ray done of my jaw/head and skull so they could see my teeth and the bone, because I am a cancer patient with it spread into my bones and And on xgevea they needed to clear it with onc. He said it was fine. The X-ray showed very strong bone density and no signs of deterioration or problems with my jaw bone or anything noticed in my head, apparently my onc wanted to kill two birds with one stone. The dentist shared with me that my head was clear and they could do the work and the jaw was fine. So I'm hopeful that the ibrance will work for me. It's been almost six full months on it me I honestly feel pretty good. Fatigue and heat flashes from hormonal are rough. The XGeva knocks me down. I take everything I am told and I can knock the sickness down with aids of medicine., but the headaches and extreme exhaustion are terrible for me. I wish my side effects were better,. Because I honestly hate it.

    ~m~

  • dixiebell
    dixiebell Member Posts: 170
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    Checking in on everyone. How long have you been on Xgeva? Anyone develop ONJ? How long is your Dr recommending you continue?

  • EvaGor
    EvaGor Member Posts: 23
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    I'm about to start Xgeva on the 20th, but I need to see my dentist first to make sure everything's ok with my teeth. I'm scared to death of ONJ!

  • amarantha
    amarantha Member Posts: 330
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    Hello ladies, I just found this thread. I was hoping to find someone to talk to about XGEVA. I had my first shot on the 6th of February. Yesterday the 7th and today the 8th, I've had a dull headache and more than usual sleepiness. Lots of extra sleeping has happened in the last two days. I haven't found much written on side effects of XGEVA. Of course the dentist had to be consulted first, so I had to overcome my terror of drills to have that panoramic xray done, and one broken molar repaired. The dentist was the charmer of the century. So anyway, I see here on this thread that others have written of the headache and the fatigue. And and tonight I feel just ... desperately tired. Anything else you can share ? How has it been going ? Does it seem to work ? Thanks ladies !

  • azs40
    azs40 Member Posts: 45
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    Hi Amarantha. I had my first xgeva shot in early december, along with loading doses of faslodex. I'm in my third cycle of Ibrance. A week and a half ago I got my last round of shots. Last week, which was my "off week" from Ibrance (and the week post shots) I felt completely run down, like I was coming down with something nasty. Tired, achey, flush, the whole 9 yards. Once I started third cycle of Ibrance last Friday night, I felt so much better by Sunday evening. Monday I felt totally fine.

    I don't know whether it's a dip in white blood cells during off-week, or bone marrow trying to regenerate, or the xgeva or the faslodex for that matter. All I know is that off-week/week after shots (not sure what's to blame) has been the toughest.

    You're not alone with fatigue! I hope it changes as our bodies to adjust to the meds.

  • melmcbee
    melmcbee Member Posts: 371
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    Dixiebell I ended up with Onj. I only had 1 injection of Xgeva.

  • chico
    chico Member Posts: 192
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    Hi I am on my 19 shot to the tummy of Xgeva and 18th cycle of Ibrance and Letrozole for extensive bone mets to most of spine, sacrum and ribs. I find the Xgeva shot no problem and mostly I have not experienced any side effects however the last 2 months I have had lots of back pain for about a week after the shot. It could of course be the cancer, arthritis, s/es’s or I/L or the Xgeva. I would be very interested to know if anyone else gets back pain following the shot. I have asked both my Onc’s about having the shots less often or even having a break but they say that they are waiting for the results of some research to advise the best dosing! So anyone else have the problem or know anything about dosing research?

  • JACK5IE
    JACK5IE Member Posts: 654
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    This is my 5th dose of monthly Xgeva for me. I too get more bone pain for a few days after. This time around I've also had headaches for a few nights after. Anyone else get headaches? I've also gotten positional vertigo that I have had in the past but haven't had for a couple of years until recently. Wondering if the meds are causing it to start again.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    hi I’m on my 15 (?) month of xygeva. The first year I received it monthly. But after some research and thanks to @BestBird ‘s amazing resource I discovered that after one year it is okay to change to receiving one injection every three months. .

    Hard to tell what it is from what medication-wise, but I did get a couple bouts of weird itchy bumps the first few months. 2 were giant welts on my arm that lasted a couple weeks and then I had a couple weird breakouts on my chest. My MO team didn’t seem to think anything of it and really had no explanation. It was unusual for me.

    Other than that, I can’t really tell if I have side effects from it or from the other drugs or just from this diagnosis?. I got a good report at the dentist. My side effects are fatigue, joint pain, and my shoulders hurt a lot at night when I’m sleeping - can’t quite figure out why this is, but something positional

  • Bliss58
    Bliss58 Member Posts: 938
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    Hello all. My onc has decided to switch me from Zometa to Xgeva. I meet with the PA Wednesday for information about it, but not sure I'll get the shot that day; assuming so. I never had any SEs with Zometa, so hoping the same will be true with Xgeva. Glad I found this thread. I assumed there would be one, but it took some searching to finally find it; not sure why.

  • Bliss58
    Bliss58 Member Posts: 938
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    LovefromPhilly, I am on Zometa every three mos. after taking it monthly the first year. You mention the same regimen is possible with Xgeva according to @Bestbird's guide, but I didn't find it. Maybe you have an updated version over mine? I was thinking the quarterly regimen is okay for Zometa because it has a half life of years, is my understanding, but Xgeva is only 25-28 days and that's why it must be taken monthly. I'll be sure to ask the PA about this at my appt., too.

  • Bliss58
    Bliss58 Member Posts: 938
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    Hello all. I got my first Xgeva shot yesterday, and so far so good; no SEs. I noted in the Chemo.care literature my onc's PA gave me that I shouldn't take aspirin. Can anyone explain that to me because the PA didn't explain it to my satisfaction and I couldn't find a good answer online; just don't take it!

  • Vevs
    Vevs Member Posts: 81
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    hi Bliss, I’ve recently gone on to 12 weekly Xgeva injections as I had been on the monthly regime for 6 months on then 6 months off. This is the usual regime that my oncologist prescribes. However I find that the injection gives me really bad bowel problems and the sux months on was miserable. So I had 6 months off and three months ago had my first Xgeva, no bowel issues. Two weeks ago I had the second injection on the new 12 week regime and my bowels are shot again.

    I’m mentioning this because you mentioned the half life. I can absolutely guarantee that Xgeva is in your system for at least 12 weeks as my diarrhoea is an accumulative issue. Just as it was on the first round last year.

    The first dose after 6 months and the first ever dose was fine. Then as it accumulates in my system things go downhill. I had a good few weeks of peace when I was on the six month break. It is definitely the Xgeva.

    Shame really as I haven’t heard many complaints about it, I really dislike it very much.