Prolia: I was diagnosed in December... - Bone Health and O...

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Prolia

kitty7 profile image
9 Replies

I was diagnosed in December 2017 with breast cancer. After two surgeries, I went to the oncologist who said I was to receive Prolia injections every six months. I have had four injections so far and I don't care for this drug at all. The only complaint I have is when I'm in bed trying to fall asleep my jaw clicks.

Is there anyone that had good results with Prolia?

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kitty7
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Kaarina profile image
Kaarina

I would think that those who have no side effects from receiving the prolia injections will not be active on this forum. I know someone who has no side effects from the Prolia injections and she has had quite a few of them. I did mention to her that she would be on this drug for 10 years or for life and must not stop the injections without taking another OP drug. She did not know this, asked her consultant and he said that is correct.

kitty7 profile image
kitty7 in reply toKaarina

Thank you Kaarina. That's good news for me.

Kaarina profile image
Kaarina in reply tokitty7

It may be worth mentioning this jaw clicking so that if you decide you wish to stop with the prolia you can continue with another OP drug so there is no time when you are without any kind of OP medication.

kitty7 profile image
kitty7 in reply toKaarina

I did mention the jaw clicking to the oncologist who said it was probably due to me getting older. That explanation didn't make me very happy.

Kaarina profile image
Kaarina in reply tokitty7

I don't think that is a good enough reply! ;) We can say that about lots of things but it is not necessarily true! ;)

kitty7 profile image
kitty7 in reply toKaarina

You're right. I need to see someone who is more helpful.

HeronNS profile image
HeronNS in reply tokitty7

An oncologist is not a bone specialist. The Prolia is a treatment for osteoporosis so you should be monitored by a rheumatologist.

No matter how long you are on Prolia please be very careful never to go past the date of your next injection. If you are for any reason switched to another bone med make sure it is started immediately. The rebound osteoporosis appears to occur rather quickly after discontinuing Prolia (denosumab) so usually people are given a bisphosphonate to protect against that.

I hope your other treatments are not causing you too much discomfort and you are feeling pretty well these days?

Met00 profile image
Met00

I've heard of people who've done very well on prolia. However, if you stop it at any time, you need to be aware that you need to go straight onto another osteoporosis medication, usually a bisphosphonate, to reduce the risk of rebound fractures.

TheDrivenSnow profile image
TheDrivenSnow

Hello, kitty7. I receive Prolia/denosumab injections every three weeks. After it was last administered, I experienced side effects for the first time: body/muscle ache, a sore throat and generally not feeling well to the point that I thought I had a temperature (but did not). These symptoms persisted for about a week following infusion. I haven't experienced the jaw-click thing you describe, but have been warned that denosumab can cause flu-like symptoms immediately after administration. On the whole, I'm tolerating the drug quite well, so will be kept on it indefinitely, along with the immunotherapy regimen (pertuzumab + trastuzumab (Herceptin) that I receive every three weeks concomitant with the denosumab.

Like you, I have had breast cancer multiple times (this being my third diagnosis: 2016 - diagnosis 1 - primary breast cancer left breast, DCIS, strongly (8/8) ER+ and HER-2+, surgery + radiotherapy; 2017 - diagnosis 2 - primary breast cancer right breast, invasive, strongly (8/8 ER+ and HER-2+, surgery + radiotherapy + oral tamoxifen (10 years); 2019 - diagnosis 3, secondary/metastatic terminal breast cancer spreading to the bones and bone marrow, surgery + radiotherapy + chemotherapy + immunotherapy + bone therapy). Please feel free to PM me if you want to offload or brainstorm.

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