I’ve been on four weekly denosumab injections since Feb 2023.
I went in for my usual injection last week and was told I’m not having it as I’m going onto three monthly injections. I was a little annoyed as i had not been spoken to about this.
Friday i get a call to tell me I have to go back this week as i should have had one last week then gone onto three quarterly injections: all without speaking to my consultant.
I’ve been on Dr Google - reputable sites and manufacturers site and they all say four weekly injections. I spoke to one of the ladies on the BCN helpline and she was unable to find any information on rationale for this as it is taken on an individual basis.
Has anyone had this change and if so what was the reasoning? I don’t see why I can’t have the next injection in June as I won’t have had one since March making the three months. Perhaps that’s too obvious.
I’m hoping some one from my team will ring me today but I’m not holding my breath.
I don’t know if this helps, but I have always only had them three monthly as that is what my oncologist wanted. I have metastatic breast cancer, but she was suggesting that that is plenty. I think at the beginning there was a bit of confusion on paperwork about it being monthly, but then very definitely when I queried it was told three monthly.
@Gillmary
Thanks for that. As I suspected no call from my team so I’ll wait until someone can be bothered to ring me with a rationale.
Hi @jan.amityville
Not quite the same situation but I started on 4-weekly and after about a year was just told that as I only needed to collect my medication every 8-weeks that the Denosumab would also just been given every 8 weeks.
At the time I felt similar to how it sounds you are now, thinking that time gaps seems quite different and no one explained it to me at the time!
I was however assured that it was fine and could be variable to suit individual needs. I got the impression that once there was a build up of it in your body it stays for a long time so it just a case of getting a top up, and actually having less means you can potentially have it longer so it could even be a positive.
I have now changed my medication so gone back to having the Denosumab every 6-weeks!!
Hope that helps as I know I felt the same as you with the change and it’s frustrating not being told why. I ended up contacting my breast care nurse who reassured me it was fine.
Take care and hope you get some peace of mind soon x
@Cubby3
Thanks for the information. You’ve hit the nail on the head - it’s the lack of consultation and discussion that has annoyed me.
I won’t be speaking to my team now until next month but I will certainly be having a conversation regarding this.
I attended the dental webinar through BCN and I’m sure the lady said that denosumab stays in the system for something like 10 years - no hope for my teeth then lol
Regards
Jan
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Hi i was diagnosed in may 2024 with secondary bc and was put on fulvestrant jags 4 weekly and denosumab 12 weekly. Im now coming up to a year since i started treatment and still on the same plan. I dont think this is uncommon but you should definitely get an explanation as to why. Xx
@Sandra_G
Thanks for the info. Glad all is stable with your treatment.
I think they’ve marked my card as a difficult patient.
I had a surprise phone call from my oncologist yesterday asking me what was going on. She’d apparently been on leave and the oncologist standing in for her assumed I was on three monthly injections.
We had a conversation about it as I usually have the monthly ones. I have a lot of pain in the rib but can’t have any radiotherapy due to my lymphoedema. I’ve gone for the three monthy injections as I’ve had a lot of dental ptoblems this year and it will be easier if I need any abstractions.
I sorted out the pain meds with my GP last month so fingers crossed it all works out.
I 2as told that as I’d been on denosumab for just over two years there was plenty in my system and that’s usually why they reduce the dose so I’m feeling a lot better about it all now.
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