DENOSUNAB: I have stage 4 incurable... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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DENOSUNAB

Gymbuddie profile image
8 Replies

I have stage 4 incurable lung cancerI have been on this drug for 20 months in respect of my bone cancer. My scans to date have all been stable and continue to show that the cancer has shrunk or disappeared to date. However, as my targeted therapy treatment (Brigatinib) is working, I am enquiring whether it is still necessary for me to continue with the Denosunab, and if I do have to, the possible reasons why?

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Gymbuddie
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RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Gymbuddie

I am pleased to hear your recent scans have shown stable disease .Denosumab is used as a preventative measure , to reduce the risk of any bone related events such as fractures. As with all cancer treatments and supplementary or symptom management medicines , the risks and benefits of treatment and supportive medicines are assessed through consultation and along with, in this case , blood test to ensure the benefit of using ,Denosumab, outweighs any risks . Stopping, Denusomab ,when it is still thought to be of clinical benefit to you may put you at more risk of vertebal fractures . It is recommended that by MRHA (Medicines and Healthcare Regulation Agency ) that Denosumab should not be discontinued without a specialist review to evalulate ongoing individual risks and benefits.

If you require any further support or advice you can contact our Ask the Nurse service on 0333 323 7200 or by emailing lungcancerhelp@roycastle.org.

Gymbuddie profile image
Gymbuddie in reply toRoyCastleHelpline

Many thanks. That was helpful

dflem94268 profile image
dflem94268 in reply toRoyCastleHelpline

In 2018 I started Denusomab (Xgeva) because the lung cancer spread to my lower left jaw bone and a few other bones. After reading about “Osteonecrosis of the jaw” that Xgeva can cause I requested to get it every 3 months. It still worked, then after about 3 months I requested to get it every 6 months. With progression 7/2023 to bones in my spine I am getting it every 3 months but will reduce it again after 3 months.

Gymbuddie profile image
Gymbuddie

Thank you for your helpful response. I’m going to speak to my oncologist about the possibility of reducing it.

dflem94268 profile image
dflem94268

A woman messaged me when I was in another group warning me about the Osteonecrosis of the jaw when I posted I was going to start Xgeva. Her husband got it when getting it monthly. I had already did my research and since I had the cancer already going to my jaw bone I didn’t want to chance it. My jaw bone and other bones have still been strong. I mentioned I was afraid of getting the Osteonecrosis of the jaw doing monthly to my Oncologist and we went that route. All the best to you.

Gymbuddie profile image
Gymbuddie

sorry. Do you mean that you get the drug monthly and that your teeth are ok? It was not quite clear in your message.

VikingRoots profile image
VikingRoots

Hi. I was diagnosed with stage 4 NSLC 2 1/2 years ago with numerous bones mets; scans have been clear on bones for two years now. Am on Denosimab every 3 months with no apparent issues. Seems to be a better safe than sorry approach but I do revisit with my oncologist every couple of months just to be happy with risk-reward balance.

Gymbuddie profile image
Gymbuddie

Thank you for your response. I will ask my oncologist if I can reduce my treatment of Denosunab to once every three months

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