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Denusimab

MarsiJay profile image
15 Replies

Does anyone have experience of injections of the above combined with letrozole please and how did you cope with them?

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MarsiJay
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wendle3007 profile image
wendle3007

I started Denosumab in April 2021 when I had my chemo. Had no side effects. I started Letrozole (along with palbociclib) in October 2021. I get lots of aches and stiffness in joints from the Letrozole.

MarsiJay profile image
MarsiJay in reply to wendle3007

Many thanks Wendie. I am relieved as I have already been taking letrozole and living with it. I thought I might have additional problems to contend with

Fiercefighter13 profile image
Fiercefighter13

I’ve been on both for almost three years with Ibrance. I never noticed any side effects. Two months ago my doctor switched Ibrance out for Verzenio, still no side effects. I hope you do well and have a long run on your protocol! Best wishes!

MarsiJay profile image
MarsiJay in reply to Fiercefighter13

That is so very reassuring. Many thanks and good wishes

TammyCross profile image
TammyCross

We are so individual! Denosumab is Xgeva. I got bad eczema from it, and then I got osteonecrosis of the jaw, a supposedly rare adverse effect that some of us on this board have suffered and have given graphic descriptions. But then, I had trouble with Letrozole -- the aching hips, and other effects -- so switched to Anastrazole, no side effects. FierceFighter says above that she has no side effects with Verzenio. I did and had to stop and will be going on a reduced dose. I had no trouble with Ibrance, except for hair thinning. Others do -- so you just have to see if you are in the majority that does well with Xgeva.

MarsiJay profile image
MarsiJay in reply to TammyCross

I am so sorry to hear that you have suffered such bad side effects. I hope you are doing all right now. Thanks for the reply.

TammyCross profile image
TammyCross

When they are that bad, they are "adverse effects." I lost quite a few teeth. I am okay but it is not good to lose 4 molars.

stardust1965 profile image
stardust1965

Denosumab is a quick small injection into the subterraneous fat in your tummy and generally easily tolerated. I have found it so much easier than Zometa which required a visit to the chemo suite and an IV drip into the back of my hand which became more and more sensitive. On Letrozole I had aching joints etc. but I moved from Letrozole on to another treatment at the same time I moved on to Denosumab so I didn’t have both treatments together. Both meds should be fine but will you have Letrozole with another treatment alongside it, which is normally the case?

MarsiJay profile image
MarsiJay in reply to stardust1965

I am only a month into treatment with Letrozole and my oncologist told me about the Denosumab injections. I am having another scan in six weeks' time to measure progress so I shan't know until then if anything else will be added. Thanks for your message; it is very encouraging

stardust1965 profile image
stardust1965 in reply to MarsiJay

I hope your scans go well and your treatment plan deals with your symptoms and you start to feel well again soon. My meds dealt with the acute pain.

MarsiJay profile image
MarsiJay in reply to stardust1965

I hope very much that all goes well with you and you will have relief from pain

The Denosumab is for your bones. I started on this before Letrozole and Ibrance (palbo) and found my back pain lessened immediately.I do my own injection at home which saves a trip to the hospital.

Hope it all goes well for you

Clare

MarsiJay profile image
MarsiJay in reply to

Thanks, Clare, for your cheering reply. You are very brave to do your own injection though the travel to the hospital is a bit of a pain. Well done

It’s actually easier and less of a shock doing it yourself.I have been going to the hospital monthly for 3 years, and wait hours for a quick injection, so I am chuffed I don’t need to go there any more.

Hope you continue for a long time on these meds

Clare

MarsiJay profile image
MarsiJay in reply to

Thanks Clare. I don't know why but sticking a needle into the fat of your tum sounds less scary than into your arm. I think the latter is a more painful area.