Denosumab

[Sunnydrinking]

Hi

It has been suggested that I miss my four weekly Denosumab injection for the next couple of months as shielding from COVID-19.

I think I am fairly comfortable with this. Can anyone offer any advice or reassurance please.

Jo

[Barbteeth]

Hi there

Last year one of the nurses messed up my denosumab injection...put it intramuscular which meant it probably wouldn’t work but my oncologist wouldn’t repeat the dose in case a tiny bit had been absorbed

I was anxious about missing a month but she reassured me that missing one or two denosumab treatments would make no difference in the whole scheme of things

Hope that helps

Barb xx

[Sunnydrinking in reply to Barbteeth]

Hi Barb

Thanks for your reply - it’s been very helpful as always. I just feel a bit low and over anxious at the moment. I’m overthinking everything and worry about anything...

I keep thinking .... once we are on top of COVID -19, if ever, we will still have our Cancer to live with.

Jo xx

[mariootsi in reply to Sunnydrinking]

I know!

[Hidden]

Hi Jo,

I can understand your concerns. Like you, I don't want to miss any treatments. Even missing those that are not life sustaining (like zometa for example) worries me. I know that zometa is for my bones and does nothing for the breast cancer itself. But I worry that if I don't get the infusion that I will end up with fractured bones. If you are worried about missing your denosumab injection for two months can you see about having it in a month's time instead? Or if it is just a suggestion, I would actually prefer to go ahead and have it as normal every four weeks. But the decision is up to you.

Take care,

Sophie

[Albert23]

They have taken me off both that and Ibrance not happy 😡

[Mindysooty in reply to Albert23]

were you given a choice? Doesn't sound like you were. This is what worries me. I've been taken off Denosumab, the onc told me it's preventative -v- curative which I get and to be fair, I'm not overly concerned about that. I get my Palbociclib (Ibrance) in 3 month batches - got one more month supply left and my next appointment is 28th May. Hoping they don't stop it. I heard a lady on the radio (UK) talking about being treated for 8 years successfully for metastatic ovarian concern, and hers was just stopped without any discussion. They said it was for her own good because of Covid and immune system which again, I get but surely that should be her choice and at least have the courtesy to discuss it with her, not just stop it. Thing is, this thing isn't going anywhere very quickly is it so to stop the Ibrance/Palbo, the question is, how long for? At the moment it's like asking how long's a piece of string because no-one really knows do they. Upshot is, I want a choice in my treatment and if I don't want to stop it, I hope I don't have to. We'll see on 28th May. Take care.

[Hidden]

Sandra, do you have the link?

[Rotagirl]

Hi Jo, I have been told that my denosumab injection will be changed to pills....alendronic acid. Both the palbo and alendronic will be delivered to me. Hopefully that will be next week, if my neutrophils have managed to climb up to 1.00 or higher. I often have this problem of neutrophils too low for treatment. This is in the UK. Keep safe, Fay

[Kiera49]

Hi my onc says there is no evidence that you need denusumab every month I'm not having mine for 3 months nice break not worried at all. All the best try not to worry. Tracey

[Hidden]

My oncologist has mentioned that denosumad Can be missed especially after you have been taking it for awhile .

[Rhwright12]

I get my Zometa every 3 months...they say getting shots every 1 month or 3 months has the same efficacy...only a 1% change in benefit. So I get my Zoladex at 3 months as well...😀