Xgeva question

tangandchris
tangandchris Member Posts: 1,855

I'm starting Xgeva next week. I would like to hear from those that have had this and what side effects were really like? The infusion nurse makes it sound like nothing, but I am doubtful that is completely true.

thanks

Comments

  • moth
    moth Member Posts: 4,800
    edited October 2021

    I've had no noticeable side effects at all. I just did mine last night. It's really been easy peasy for me.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2021

    Its a fairly small needle in the grand scheme of things but make sure the nurse pushes it slowly and that it is warmed up (they have to get it from a fridge) first. One hospital they gave it to me to warm in my hands and another it comes already warm. Last time the nurse gave it in about 2 seconds and I had quite some flu feeling symptoms the next few days after, though that was the first time it had happened. I also sometimes feel a bit tender where its been given and can feel "wobbly" for a day or so after. I know this sounds bad but honestly they are all minor side issues!

  • Jsniffs
    Jsniffs Member Posts: 65
    edited October 2021

    My experience has been the same as Moth, and I just got my Xgeva shot yesterday too! I've been getting it for a couple of years now. The worst part is the burn of the injection, but it's quick and over before you can start to complain. :)

  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2021

    it sounds as if this one is easier to tolerate than Zometa. I was supposed to start Zometa but the nurses were unable to start an IV on me.

    Thx y'all.

  • Jsniffs
    Jsniffs Member Posts: 65
    edited October 2021

    Tangandchris - That's why I got approved for Xgeva - I have tiny veins and didn't want to deal with failed infusions. Also, Zometa remains in your system for a long time. Xgeva, has a shorter half life. My personal preference is to go with stuff that is more reversible. However, sometimes there isn't a choice based on insurance and other factors.

  • Chicagoan
    Chicagoan Member Posts: 728
    edited October 2021

    For me Xgeva is like "nothing." With an experienced tech, the shot feels like a butterfly kiss and I have never had any side effects.

  • candy-678
    candy-678 Member Posts: 3,950
    edited October 2021

    I have had Xgeva injections for the whole time--- 4 years now. At first was monthly for the first year. Then every 3 months since. I hear that it is more expensive than Zometa, but my insurance has never balked. At first I felt flu like after the shot. But now I don't feel a thing. Easy peasy.

  • goldie0827
    goldie0827 Member Posts: 6,595
    edited October 2021

    Been on Xgeva for years, no SE's what so ever. They send it to me and I inject it myself, in the tummy. Can't feel a thing.

  • illimae
    illimae Member Posts: 5,710
    edited October 2021

    Early on I had a little of what felt like bone pain they day after my Xgeva shot and took generic Claritin the day of and day after as recommended by several others and I worked great. As time went on, I forgot a few times and had no issues, so I stopped the Claritin. I hate needles, so I don’t look but I do ask them to inject it a little slow and it’s only a pinch when I do feel it. I find the belly easier for me but honestly, this shot is nothing compared to anything else I’ve done for cancer, sometimes removing the bandaid is more painful than the shot.

  • terri-c
    terri-c Member Posts: 180
    edited October 2021

    I have been getting XGeva for 7 years. As far as side effects, not much. The shot burns a bit when they give it to me, and I usually get a headache about an hour after, but it is never bad, and is usually gone by morning.

  • Iwrite
    Iwrite Member Posts: 870
    edited October 2021

    I've been taking Xgeva for six years, but slowly spread out injections so they are now every six months to reduce the chance of bone issues

    Had anyone had a tooth removed without problems while on this drug? I remember Gum Doctor and others who had huge issues with ONJ, but the statistics say there's only a 5% risk. I have to do something, but really don't want to invest $1k+ in a root canal for a tooth no one can see.

    I would value any input from the group!

  • Dancemom
    Dancemom Member Posts: 369
    edited October 2021

    The only thing I notice with the injection is sometimes I feel the cold radiating up into my neck- but not as much as with the covid vaccine (yay, got my booster!). I teach my dance classes after no problems so far. I've been getting them every 4 weeks since April.

  • candy-678
    candy-678 Member Posts: 3,950
    edited October 2021

    Iwrite- I forgot this Thread and just posted on the Bone Mets Thread about this.

    I will post a link to the Bone Mets Thread for anyone to see my latest post and a link I put on there from a conference I watched. It talks about spreading Xgeva to every 6 months, and about taking a "treatment vacation" after being on it for 5 years.

    https://community.breastcancer.org/forum/8/topics/...


  • moth
    moth Member Posts: 4,800
    edited October 2021

    Just wanted to add that i do it at home & take it out of the fridge ~30 min before so it's not cold

    also it only stings if injected fast... if it's slow, I don't feel it at all.


  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2021

    Iwrite, I was on Xgeva for 18 months and one of my crowns in the front went bad. I had to be off it for six months before I could get work done. I had an implant done in the front plus a couple of fillings And then it should have been six months off after the work but I had my next dose at three months, then another at six.

    And I've been off since then for more work.

    No ONJ (yet? Knock wood).


  • tangandchris
    tangandchris Member Posts: 1,855
    edited October 2021

    I got my 1st shot yesterday. It stung pretty bad, but it didn't last long. So far no side effects! Can it really be this easy?? Lop

  • Lee64
    Lee64 Member Posts: 184
    edited October 2021

    I took Xgeva every month for about a year. Then an abscessed tooth happened and had to be taken care of pronto. I got ONJ and have been seeing my oral surgeon on a regular basis. Healing is a long process and not pleasant. My oral surgeon has treated this in other patients and he told me that Xgeva stays in your system for a long time. It's been 17 mos. that I have been dealing with it.


  • gailmary
    gailmary Member Posts: 332
    edited October 2021

    I've taken it 4 yrs now. I think it was after 3 that we went to every 3 months. I'll have to check Candy's link for cutting back.

    No side-effects. But plenty of anxiety with current dental issues. Last dose was July 14th. Expecting to need a root canal soon. Just don't know which tooth cause at this point dentist says I've got reversible pulpitis in 4 teeth. This after a crown on a cracked tooth 3 weeks ago. The nerves are all connected and need to calm down. Yeah, you got that? Root canal far preferable to extraction which could lead more easily to ONJ.

    Take it, it's worth it.

    Gailmary

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2021

    it was easy for me too. No noticeable side effects. The only concerns are long term - possible fractures after long term use and ONJ


  • moth
    moth Member Posts: 4,800
    edited October 2021

    fwiw, my cancer center has an oncology dentist and she said that if I ever needed dental work since starting on xgeva i have to contact them first and they would help guide the treatment or do it themselves.

    She said they had techniques that regular dentists wouldn't necessarily know. So might be worth looking into if you're with a bigger cancer center

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2021

    Unfortunately,I did not have access to an oncologica dental specialist and my cancer center was no help, although they do have a close association with an NCI center.

    However, the good news is, the two oral surgeons I consulted with were very knowledgeable about the bone strengtheners and ONJ, much more so than my regular dentist was.

    If you can't find a specialist, let an oral surgeon do your work rather than a normal dentist. Or at least, get a consult with a surgeon

  • Iwrite
    Iwrite Member Posts: 870
    edited October 2021

    Thank you for all the comments! The current plan is oral surgery on Wednesday. I’ve contacted the oral surgeon to verify he’s successfully worked with patients on bisphosphonates before. I’ve been o. A six month Xgeva schedule for 3-4 years and 3 month schedule before that and haven’t had a dose since June. If I had limitless funds and great dental insurance I’d do the root canal instead. If I have an extra $3k I’ll take a vacation rather than get a pretty tooth in the back of my mouth:) I’ll let you know how it goes so others can have information in order to make decisions. Thanks again ladies

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2021

    Good luck!🍀.

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