denosumbub: hello fellow thrives, I... - SHARE Metastatic ...

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denosumbub

BritSammy profile image
15 Replies

hello fellow thrives,

I have not been seeing post from this group daily as for some odd reason they are going straight to my junk inbox? Anyway I just wanted to ask for any experiences of denosubub to protect your bones. Sorry if I have not spelt it correctly.

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BritSammy profile image
BritSammy
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15 Replies
NPmary profile image
NPmary

Research shows it reduces bone fractures. Advised to take it if you have bone mets. It wasn't too hard of a drug for me, side effects: some GI and achy muscles/bones.

BritSammy profile image
BritSammy in reply to NPmary

Thank you x

Jenhood profile image
Jenhood

I’ve have had this injection for the last two years

Currently take it every 8 weeks as I have bone mets

Other than feeling a little tired afterwards I have had no problems

I take along side Adcal as it can reduce your calcium levels

BritSammy profile image
BritSammy in reply to Jenhood

Thank you x

wendle3007 profile image
wendle3007

I've had denosumab injections every 4 weeks for 3 years now. All types of bone scans show it is doing its job and is producing extra layers on my bones. I also take AdCal (calcium and vitamin D) supplements as prescribed by oncologist. Some people report aches after the injection is given. I believe this all depends on how competently it is given. 90% of the time I have no problem but if any new nurses do it, I do get some aches for about 24 hours after.

BritSammy profile image
BritSammy in reply to wendle3007

Thank you x

Sweetpea1970 profile image
Sweetpea1970

hello! I’ve been having denosumab injections every 4 weeks for the last 2.5 years with no side effects at all. I mean no one likes having needles stuck into them but is a few seconds of discomfort every few weeks. I have bone mets to spine and pelvis and have been stable since starting treatment in Sept 2021 (letrozole, palbociclib, denosumab, zoladex). I still live life pretty much as normal. I have to work as I am single but have chosen to go part time as I do get very fatigued (probably the palbo). Best of luck going forward with you treatment 🥰

BritSammy profile image
BritSammy in reply to Sweetpea1970

Thank you so much x

bikebabe profile image
bikebabe

I’ve self injected denosumab (in my belly) monthly for 2 yrs (get deno delivered in cold bag and store in fridge and have needles, syringes etc etc). Gradually reduced frequency ie 6 weekly then 3 monthly (at my request as had read that it was rare to have it monthly after an extended period). No side effects noted. I have a mouthful of 30 yr old crowns, fillings and gaps so use high strength fluoride and am careful with dental hygiene routine to minimise need for procedures. And the Adcal lozenges every night (to be 4 hrs away from morning thyroxine). Bloods quarterly to check calcium etc.

bikebabe profile image
bikebabe

and likewise re junk folder. Now I know to recover from junk but it’s annoying as I usually junk all my junk without looking to avoid wading through ads for p****s extenders etc.

Beryl71 profile image
Beryl71

Is it different from zolondronic acid.

Dflur profile image
Dflur

I have been taking this for about 3 years, except when I had dental work coming up.

I haven’t had any problems with it. I hope it is doing what the doctor says it should do for my bone health. I ve been on ibrance and anastrozole since 2019.

TammyCross profile image
TammyCross

Xgeva (denosumab) has been found to be more effective than zelodronic acid (Zometa). For unknown reasons, my oncologist started me on Zometa. I couldn't tolerate it - was knocked out for a month. Switched to Xgeva, no bad side effects and it cleared up my bone mets completely and quickly.

Unfortunately, I stayed on it for another two years, began refusing, but too late. Had dental issues around implants and got osteonecrosis.

Now I have bone mets again but can't take any of the osteoporosis meds. I guess because my jaw is already compromised. Part was cut out, with a few teeth, but the remainder is not strong.

Pachira profile image
Pachira

I was on Xgeva for 5 years. It works well but after that time you can have spontaneous fractures and they have no alternative treatment. I did read that if you started on Zometa it was better in the long run. I ultimately developed onj, eye problems and compression fractures. Now I wish I hadn’t started it but I did get 5 years so it’s all swings and roundabouts. Good luck in your research. Chris

Bettybuckets profile image
Bettybuckets

I haven’t had any side effects and it appears to be protecting my bones… have had some bad falls on my bike ect and everything hasn’t crumbled as I thought it might. Good luck!

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