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Xgeva

bankusboysmom profile image
32 Replies

Just a quick question: I'm getting my first Xgeva shot tomorrow...is it anything like Faslodex? Don't know what to expect.

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bankusboysmom
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32 Replies
Iwasborntodothis profile image
Iwasborntodothis

I had my 12th Xgeva injection yesterday. Stings a little and overall a little tired after but super easy you will be fine. Take your calcium and vitamin D supplements because my calcium blood level just started to go down from this med so we are switching to every 12 weeks from now on.

bankusboysmom profile image
bankusboysmom in reply toIwasborntodothis

Thanks so much. I’ll be sure and keep an eye on my calcium level.

bankusboysmom profile image
bankusboysmom

Thank you Sandra, always appreciate your responses, not just me, but everyone, learn so much from you!

SeattleMom profile image
SeattleMom

Not at all like Faslodex. Totally different injections sites. Faslodex into butt muscle slowly and Xgeva into belly fat quickly. I get Faslodex once each month and Xgeva once every 3 or 4 months. The Xgeva leaves me with a bit of bone aches for a few weeks, while I feel little or no side effects from Faslodex.

We’re all different but this gives you one perspective. Hope all goes well! God bless you!

Linda 💗💗🙏🏻🙏🏻

bankusboysmom profile image
bankusboysmom in reply toSeattleMom

Thanks! Got my first one today and it was no big deal. This is going to be so much better than faslodex. Hope you're doing well.

Sunnydrinking profile image
Sunnydrinking

Hi

I’ve had Xgeva/denosumab injections on a regular basis for nearly 3 years usually in my fat belly ! I’ve never felt a thing! I’m also prescribed Adcal Vit D capsules whilst receiving these injections.

Jo xx

bankusboysmom profile image
bankusboysmom in reply toSunnydrinking

I, too, have a fat belly, but my nurse insisted it was not fat but fluff! I'll go with that. It was no big deal. Onc didn't want me to start calcium yet because my number was really good. But I do need to start Vit D. Thanks for the info. Hope you're doing well.

lynnhbtb profile image
lynnhbtb

For me, xgeva is nothing like fasolodex was. Xgeva isn't as thick and doesn't seem like as much. Also, they just give it in my arm, not my bum. Really not a big deal, I think. I did have some achey-ness that week, but I can never tell if it's from xgeva or the neulasta. Best of luck.

bankusboysmom profile image
bankusboysmom in reply tolynnhbtb

Thank you. Got my first one today and it was so easy peasy compared to Faslodex.

Samsontheodore profile image
Samsontheodore

Quicker and more simple than Faslodex for sure! Get them monthly in my arm and never have had a problem.

Just as I was getting use to Faslodex shots, they quit working with Ibrance after a year. Loved that combo, but now on Tamoxifen and Afinitor (Everlimus), and seems I read earlier you were also on the same drug? I couldn’t handle 10 mg dosage, but changed to 7.5 mg and so far, so good. Diarrhea under control finally. Wondered how you were doing on this, if, in fact, you are also on same regiment. 😊

bankusboysmom profile image
bankusboysmom in reply toSamsontheodore

I've just started Afinitor and Aromasin plus the Xgeva. I had Tamoxifen back in 2005 when I was first diagnosed. My onc has started me on 7.5. So far, it's almost too good to be true. I'm having such an easy time with it, it makes me wonder if it's even working:)

Gwennie123 profile image
Gwennie123

I’ve had Xgeva once a month for the last 2 1/2 years. MBC Mets to the bones. Doesn’t bother me at all. I hope your experience is the same.

bankusboysmom profile image
bankusboysmom in reply toGwennie123

Just had my first, but so far so good. Everyone has been right, Xgeva is much easier than Faslodex. The nurse who gives me my shot calls this her "happy drug" because everyone is happy with the simple and quick injection. Thanks for replying, take care.

debbiedo2063 profile image
debbiedo2063

Hi thereI get my injections of Xgeva monthly alongside Faslodex, the Xgeva takes a second into the abdomen don’t even feel it , to be honest nor do I feel much from the buttock ones, onto cycle 5 Ibrance and pick that up the same day.

I’m normally in the clinic 25 mins a month for the lot on the same day which is great as the rest of the month no appointments.

Debra xxx❤️

Gingerann1 profile image
Gingerann1 in reply todebbiedo2063

Hi Debra! I am on Faslodex since Jan. and starting my 4th cycle of Ibrance tomorrow. Did your Onc prescribe Xgeva at the same time as the other two? Just curious if that will be added for me. I have pleural effusion and nodule on left lung but no mets anywhere else. 🤞

Iwasborntodothis profile image
Iwasborntodothis in reply toGingerann1

Xgeva is for bone mets- it is a high dose of prolia (that annoying commercial with the jogging woman narrowly avoiding a pine cone trip hazard) it is for osteoporosis and my doc says it makes my bones “less hospitable” to cancer

Gingerann1 profile image
Gingerann1 in reply toIwasborntodothis

Thanks for your response...hope I won’t need the Xgeva to be added then😳. I hope you do well with your regimen.

debbiedo2063 profile image
debbiedo2063 in reply toGingerann1

Hi thereYes I started on Ibrance 125 , Xgeva and Faslodex all at the same time in Dec 20. I started with injections every 2 weeks for first month so they could check bloods and make sure I was ok. I have pleural effusion, bone mets to sacrum and nodal mets. Had 1 scan and it was very promising , oncologist asked if I had had fluid drained but I haven’t she said it had got a lot less since Dec 20. Doing ok day to day, just fatigue towards end of cycle but seems par for the course.

Take care

Debra.xxx

Gingerann1 profile image
Gingerann1 in reply todebbiedo2063

I just had my first scans last month and everything is stable. I did have a large amount of fluid drained through Thoracentesis in Dec. and scan in March showed no increase in fluid. Praying I can stay on this treatment plan for a good while.

bankusboysmom profile image
bankusboysmom in reply todebbiedo2063

I do all my appointments on one day and I love having the rest of the month free so I can plan my days. I hope you can stay on Ibrance for a long time, except for the fatigue I liked Ibrance. Take care.

I find the Xgeva injection really easy , slight sting but that is it . I have had it for 5 years with no problems . All the best !

Luann

bankusboysmom profile image
bankusboysmom in reply to

Had my first one yesterday, and it was easy, very slight sting that went away almost immediately. Take care.

PJBinMI profile image
PJBinMI

One of the first thing I did after getting the MBC diagnosis was to really work at "making friends" with needles! lol I'd had a really bad experience with an IV infiltrating at night when I was in my early 20s and had what was probably a mild PTSD like reaction to needles ever since. I've gotten way past that and have not been troubled emotionally by either Faslodex or Xgeva injections. I have been in treatment for MBC constantly since first bc diagnosis 17 years ago and was on Zometa infusions for bone mets until Xgeva became approved by the FDA and have been on it since, with about a two year "drug holiday" from it a couple of years ago when I had to have some invasive dental work done to remove an old bridge and place a new one. I got over 9 years from Faslodex and never had more than a bit of occasional tenderness in the injection areas. Xgeva has been really easy and I too have a fluffy belly!

bankusboysmom profile image
bankusboysmom in reply toPJBinMI

WOW...17 years. I was first diagnosed in 2005. In 2013 learned it had spread to bones and just now have learned I have a very small amount in my right lung. Overall I've done well. I have no problems with needles and I'm so sorry you went through such an ordeal. The nurse who gave me my first shot yesterday really emphasized the jaw problems (forgot name) you can get with taking Xgeva and having invasive dental work done. When I last went to my dentist and told her I was now on Xgeva she insisted I come in every 3 months, instead of usual 6, so she can keep an eye on things. Take care. Melinda

cleo1692km profile image
cleo1692km in reply tobankusboysmom

Blessings your way! Thank You for your experience. I will start Xgeva next month. Have been on Zometa infusions for 2 yrs. I've become use to the side effects, and been fretting about getting use to a new drug. Prayers your way.

Gingerann1 profile image
Gingerann1 in reply toPJBinMI

Encouraged to hear how long you’ve maintained with MBC. My neighbor is in year 17 as well which gives me so much hope.

EvaL profile image
EvaL

Well I took Xgeva for 4 years. I also had dental work done which was not a good thing but I had to get a tooth out. It basically did not heal. When I told my nurse practitioner in the cancer center my mouth was really bothering me she took me off Xgeva. November of that year which she took me off of it in January a bone started growing on the roof of my mouth. This February I had the bone removed and a large amount of dead tissue removed along with losing four teeth. I am telling people this because we supposedly took all the precautions with the Xgeva and it still messed up my mouth. I also now have an infection in my jaw bone that I have to give myself IV antibiotics daily.

Please be informed and careful.

bankusboysmom profile image
bankusboysmom in reply toEvaL

Yokes! I am so sorry for all that you’ve been through. Thanks for reminding us all (those on Xgeva) how dangerous it can be. The moment I feel something isn’t right I’ll be at my dentist office. Take care

cleo1692km profile image
cleo1692km in reply toEvaL

So sorry you've had to go through this on top of everything else. I'll start Xgeva next month, been on Zometa for the last to. Having to change due to kidney issues. My teeth need so extensive work, so this scares me. Think I'll just let them fall out lol (Hate the denist)

My oncologist gave me Xgeva shots for the past 2 years every quarter. Not monthly. I was also told to take 1200mg of Calcium every day. At the 24 month mark, now, my oncologist said he is taking me off Xgeva as he said you shouldn’t be on it for more than 2 years. Mail be it’s because I’m NED. Not sure. Now I wonder if I should still take the calcium. Any thoughts?

Thank you!

❤️🙏❤️

bankusboysmom profile image
bankusboysmom in reply tohopenowandtomorrow

I have no idea. No one has mentioned that you can only take Xgeva for so long and that's it. About continuing calcium, next time you get your lab work done, check where your calcium level is at, then ask your onc whether you should continue.Congrats on being NED!!

EvaL profile image
EvaL in reply tohopenowandtomorrow

Maybe since you have only been on it for a couple years that will be good. I also only got a shot quarterly. I pray you don’t have the same result as I did, the side effects are different for each patient. Maybe just make sure you have your teeth checked by your dentist and ask questions to make sure you stay on top of the care. I hope you are good and take care.

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