Denosumab/Xgeva

[Toomanyquestions]

I’m just about to have my first bone strengthening injection and have just read the side effects. Now I am terrified. Have to leave in 1hr. Has anyone had a bad reaction to it? Do I really need it?

[Maludagui]

hi 🌺 You're going to be fine. Do not read so much about side effects. Think positive. That's the injection that saves your life 🌺 I've already put 7. And we're good. Do not worry. One time it gave me a little more fatigue. Dormi a little and ready. I send you positive energies. 🎀🎀

[Hidden]

Hi Ellie,

It is common to be afraid of the unknown. When I had my first bone strengthening infusion last June (Zometa) I was given leaflets listing all the possible side effects. The chances of you developing all the side effects is unlikely. As to whether you need to have infusions, that is between you and your oncologist. Zometa is intended to help prevent osteoporosis and broken bones, which I suspect is the same with Denosumab. If you are worried about side effects, I would ask your doctors or nurses about the best way to deal with them. It might just be a case of taking some ibuprofen or paracetamol if your joints start to ache, or getting some extra rest if you feel tired afterwards.

I hope your first infusion goes well.

Sophie x

[Toomanyquestions in reply to Hidden]

Thanks Sophie. I’m sitting in the chemo bay where I had my first x6 IV chemotherapy that put me through hell and then didn’t work. Needless to say I’m freaking!!! X

[Hidden in reply to Toomanyquestions]

Hi Ellie,

I hope you get a nice comfortable chair. Are there any recliners you can sit on? I would ask for a cup of tea or coffee if you are not offered one by the nurses. It can help if you feel that this is more of a social visit than a clinical appointment. We are offered refreshments when I attend my appointments, and there is normally music playing in the background. Going back to where you had chemotherapy must be hard. It was hard for me to step foot back into the same hospital where my mum was treated for her cancer all those years ago.

Take care. You will be fine. Maybe there is another patient sitting near you that you can speak to.

Sophie x

[Toomanyquestions in reply to Hidden]

So sorry about your mum, I’m sorry you’ve had that experience Xxx

[Hidden in reply to Toomanyquestions]

Thank you, Ellie. I had the choice of two hospitals when I was getting ready to start treatment and I chose the one where I was born, and where my mum was treated and died. It is closer to home, which is easier for me. I can handle going there now, but it was hard at first.

Sophie x

[blms in reply to Toomanyquestions]

I have had for exchange the shots so so much and I’m not having any problems with him at all.

[Zebra2018]

Hi, I have 4 shuts if xgeva so far without side effects. It is necessary for strengthening of bone.

Good luck to you

[friesianfan]

Hi Ellie,

One recommendation is to ask for the slowest flow rate possible. This made a lot of difference in our case as far as side effects.

Good luck!

[Missie31 in reply to friesianfan]

Slower helped me and I also get some sort of steroid to deal with a reaction I had.

[Toomanyquestions]

Hi Sandra, thank you. I absolutely hate going in to hospital. I hate being ill. I was so fit now I struggle to walk. I can’t bear to be around my children as they are so happy and I don’t want them to see me being so depressed x

[Oliveoyle in reply to Toomanyquestions]

Hi. It’s going to be ok. Let the people who love you take care of you. I remember it was very hard the first time I could open a jar or carry something heavy. Be nice to yourself about this. ❤️

[Barbteeth]

I have xgeva and I’m fine...it takes about 2 seconds to administer

You’ll be fine

Barb xc

[Francesca10]

Xygeva is relatively easy compared to what you have been through already. Its a simple injection. Relax. Don’t dwell on possible side effects. Look at the bone building it will do which you need. You got this. No worries!!😘

Frances

[Toomanyquestions]

Thank you for your kind reply. How long have you been dealing with this? X

[ToxicBewbz]

I’ve been on Xgeva most of the past year and honestly don’t notice any side effects from it. It’s a stinger of an injection but we go through far more painful things during this journey. It helps keep our bones rebuilding as the disease breaks them down.

[Dianne417]

Hi, Toomanyquestions! I wish I still could take Xgeva! I had to stop because I am one of the rare few who developed osteonecrosis of the jaw, but now that I've been off of it a year, I'm also developing a new compression fracture in my L3 vertebra. When I saw the bone scan results, all I could think was that this might not be happening if I could have stayed on the Xgeva.

I w/b very careful about your dental care, but other than that I think it's a great drug.

Dianne

[Southside25]

I'm on Ibrance/Lotrozole and have had Xgeva shots about every other month for a year. I've had absolutely no side effects. I think they have to mention every possible side effect so they don't get sued because someone got some weird problem after taking the drug.

[Toomanyquestions]

Thank you for all your replies. I had the injection. It was all fine except I felt quite sick in the night. Feeling okay this morning. X

[Mimiholl]

I agree with all those great responses. I get an xegeva shot every month for the past 22 months, and my nurse tells me to take a deep breath and yes it stings. My only reaction is bone pains for a day or two. I try to not go on the internet , it always scares me silly. ( compared to surgery, chemo, radiation this is nothing) There is a lot of evidence on how well the bone shots work with ibrance and letrozole, I trust my Drs to know what's best . They've got me through almost 3 years since my diagnosis. I have my every 3 month full body bone scan, and Ct scans of chest,stomach and pelvis. So 🙏 All will be well.

[Misshelley]

My niece works with cancer patients as a nurse and she told me not to get the injection. She told me to take the pills instead because if you get side effects they can last up to 6 months after. If you the pills the side effects clear up quick. You may have no side effects at all but if you do would you want them to last 6 months? Not me - I'll stick with the pills.

[Rhwright12 in reply to Misshelley]

Hi Misshelley!

Which pills are u on? I’m having problems with my Calcium levels raising, brain fog, bone pain and flu symptoms after XGexa...extremely rare I know! But it wouldn’t be me if it wasn’t rare and bizarre...😂

So I was wondering what u were on that I could suggest especially since I believe that the pills aren’t as strong so maybe the side effects would be more tolerable as well...😀

[The-artist]

I had one injection and never again. I think I had half of the side effects they lasted about 3 1/2 weeks I shook, jerked, twitched and a lot of the other symptoms but every one is different. You may be ok. I wish I could take them. I would like to know how u do.

[Toomanyquestions in reply to The-artist]

I’m okay so far, felt sick last night but okay today. It takes me a day to recover from just going to a hospital. X

[The-artist in reply to Toomanyquestions]

It’s rough on me to going every Monday for blood draw and seeing dr. I also have emphysema and on oxygen 24/7. Hoshimoto thyroitis which makes me tired. It’s just rough bathing and getting ready to go. Then getting there and back. It takes me 2-3 days to recover but I’ve just excepted that that’s the way it is and I have a opportunity to meet others and visit with nurses and others there.

[Toomanyquestions in reply to The-artist]

Oh no I’m so sorry to hear that. X

[Rhwright12 in reply to The-artist]

I told my Onc my legs were shaky in the morning as well...We’re playing it by ear right now...

[Julie2233]

I’ve had 13 injections of it. The only issue i’ve had is the nurse wanting to put the injection into my tummy rather than arm. After checking instructions she agreed that it could go in either. So the arm it was!

I have awful teeth but my dentist wasn’t worried about the side effects. He said it might be an issue if I needed an extraction but routine dental work would be fine (his mother is on it too so he was quite familiar with it).

[Nananewf54]

Not to worry to much ..the only side effects i ever had was feeling tired ..achy bones and flu like symp. I t will keep you hurting for about a week ..also make sure you take some kind off pain meds before and during ..extra strength tynelol or what ever u can take .i have had 5 injections already ..1 per month Zometa. Nothing bad from it ..Good luck.

[MacroMom]

Wonderful to read all the support you received! I'm one more pro-Xgeva voice. I have "innumerable" bone mets and have had Xgeva every other month for a year and a half. No side effects that I've noticed except that initial sting, and it does seem better if they inject it more slowly. Wishing you all the best!

[diamags]

Easy-peasy. I've been on it 5 years now. Easy injection ...and I don't know of any side effects.

[Toomanyquestions in reply to diamags]

Do you have any tips for getting to 5yrs? Are you ER+? Is it just in your bones. Glad to hear you don’t get side effects X

[diamags in reply to Toomanyquestions]

A lot of sugar and hiking with my dogs. Okay, maybe don't follow the sugar advice. But I do eat too much of it! I am ER/PR + and HER2 -. I've been very lucky to respond well to aromatase inhibitors. I have not tried anything else yet and am stable. I think it really has everything to do with genetics and not so much what we "do." My doc told me to enjoy life, eat enough healthy things to help my body and exercise. I'm crazy careful about taking my meds and not forgetting. The hardest thing was realizing that I can't control this disease. It will do what it's going to do.

[diamags in reply to Toomanyquestions]

Oh, I have a met to my T8 vertabrae

[Toomanyquestions in reply to diamags]

Wow you are lucky they caught it early then X

[Toomanyquestions in reply to diamags]

I have loads all over the place. Makes me very scared x

[diamags in reply to Toomanyquestions]

Deep breaths and do what your doc says. My first two years were horrible.

[Toomanyquestions in reply to diamags]

Emotionally or physically? X

[diamags in reply to Toomanyquestions]

Emotionally. I was supposed to be Stage 2, no problems "you'll be just fine." When they took x-rays to plan for my radiation, they found the met. ...and the rest is history...

[Toomanyquestions in reply to diamags]

They never told me what stage I was. I did ask but they avoided the question I must have been stage 3. They told me with all the treatment I’d live to be 80 - it came back age 42, with two young children. I’ve known since November. The shock started in January, now I have daily panic attacks X

[diamags in reply to Toomanyquestions]

It is not an easy trip. I had counseling and still take antidepressants. (Lexapro works for me, but it's very individual). I would recommend both. You need to be extra patient with yourself. The grief is overwhelming, let it flow through. When I was diagnosed I found myself trying to make it the time when I was healthy. I had no interest in being this sick. Once I got some good scans under my belt, I started to accept "the new normal." Don't get me wrong, I freak out every time I go in for scans, but i'm better than I used to be. That's the best I can do, and it has to be good enough.

[Toomanyquestions in reply to diamags]

How long have you had MBC?

[diamags in reply to Toomanyquestions]

They found my met in October of 2013. 5 years.

[Toomanyquestions in reply to diamags]

Do you just have one? X

[diamags in reply to Toomanyquestions]

Yes, I'm lucky to have one. As we know, that can change at any time. There's no such thing as a good met.

[The-artist in reply to diamags]

All of you who are able to take it I’m glad for you. Wish I could. Maybe it has something to do with my inhalers or thyroid meds or something. I can only speak for myself.

[Gwennie123]

Yes you need it.

My side effects are negligible

We all react differently

Have the doc warm it a bit before injection

❤️

[laurac1014]

I know the feeling. I went to my dentist and had the full course of xrays and an exam to help be certain I will not be needing a root canal in the near future. My dentist was very reassuring. I feel much better.

[Hidden]

How are you managing the xgeva injections ?

[Toomanyquestions in reply to Hidden]

It was okay. A bit nauseous and achy in the night. Thank you for asking x

[Lilykristymichael]

Thank you for your positivity. It is so important!

[Diana_Long]

I’ve had my first two injections. The only side effects have been feeling warmer than usual. Not hot flashes, just air temp feels warmer.