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Denosumab

14 REPLIES 14
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Member

Re: Denosumab

Thanks Pawsome for the link.  Much appreciated.

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Member

Re: Denosumab

Hi Kate,

So glad everything has been OK for you since the restart of denosumab.  That is good news.

Thanks also for the information.  Much appreciated.

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Member

Re: Denosumab

I was diagnosed straight to stage 4 October 15, I started Denosumab injections monthly about 6 weeks later. I had 6 injections then stopped because I needed some dental work to try and save a tooth, and then didn’t have any injections for a further 4 months afterwards, so I was off it for 7-8 months. I re started again monthly, and 5 months later my jaw broke down, so no further Denosumab and several infections in my jaw. I was referred to the Maxillo Facial consultant who confirmed my jaw could heal, or progress to ONJ. Thankfully after about a year it was fully healed and I was able to re start Denosumab. The Max Fax consultant had said they believed 3 monthly injections were the way to go as the drug has a long half life and stays in the system, sometimes for years, but obviously my Oncologist would decide.

Fortunately for me I have a lovely Onc who was willing to do whatever I felt most comfortable with, but explained that the hospital policy had also changed (Max Fax was at a different trust) and they now gave a monthly injection for 2 months, then the injections were 3 monthly. It turned out another patient had issues at the same time as me, and reviewing the recent research they’d decided on this policy.

i opted to just have 3 monthly from the re start, that was almost 2 years ago and fingers crossed everything’s been okay. 

Hope everyone is enjoying the good weather.

Kate x

 

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Community Champion

Re: Denosumab

Hi Pawsome,

Thanks for the info, I'll definitely check this out as I have also been wondering if I can ask my Onc to swap my Denosumab to 6 or 12 weekly! xx

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Member

Re: Denosumab

Yes of course.  The forum wouldn’t let me post the link to the study but the title of it is ‘An randomized trialcomparing four-weekly versus 12 weekly administration of bone-targeted agents (denosumab, zoledronate or pamidronate) in patients with bone metastasis from either breast or castration- resistant prostate cancer’. 

It was published in the Journal of Clinical Oncology in 2019 x 

 
 

 

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Member

Re: Denosumab

Hello,

Are you able to cite the study please?

Thank you, 

 

Angel

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Member

Re: Denosumab

Thanks Pawsome, that's really interesting.  I will certainly take this up with my Oncologist as 12 weekly is better than 6 weekly, especially as it's still deemed just as effective.  Are you able to send me a link to that study that was published recently please as I'd like to read that.  Cheers.

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Member

Re: Denosumab

Hi. There was a study published recently that confirmed that having the injections every 12 weeks (rather than 4 or 6 weeks) is just as effective but is better for patients as it reduces the risk of ONJ and spontaneous fractures. Most hospitals should now have updated their protocols to switch ladies to 12 weekly for this reason. I don’t use this forum that often as I’m more active in other groups and most of the ladies I speak to there are now on 12 weekly injections. Just ask your oncologist to look at the latest research xx

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Member

Re: Denosumab

Thanks Nicky.  Really appreciate your response. It's certainly looking like it might be tailored to fit in with other drugs, based on the responses so far. 

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Community Champion

Re: Denosumab

Hi

Ive also been on Denosumab a long time, probably since around 2013, previously I was on bisphophonates.

Like Helen I have had it at varying intervals, starting at 4 weekly which was the protocol when it was first used in the NHS.  Since then it’s fitted in with my various other treatment cycles of 6 weekly (ie every other 3 weekly chemo cycle) or 8 weekly (every other 4 weekly Fulvestrant injection) and currently on 12 weekly, again to fit in with my Fulvestrant injections. My bone mets have remained stable since I started on it and I don’t take calcium supplements as my calcium levels have also remained the same throughout. The hospital pharmacist and any new oncologist I’ve had don’t like this but now accept that I don’t need them  ( and saves me from yet another thing to take!).

Nicky x

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Member

Re: Denosumab

Thanks Helen, that's really helpful.  You are definitely the first person I have come across on a 24 weekly injection.  I had understood the opposite about denosumab, in that it doesn't stay in your system for a long time, but I guess this is the thing about drugs, there are so many opinions about each and every one of them.

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Member

Re: Denosumab

Hi 

I have had Denosumab since Dec 2012, it was licensed in Oct 2012. During this time I have had it 3, 4, 6, 8, 9, 12 & 24 weekly depending on whichever treatment I am on. Currently due to in part to Covid, I am 24 weekly. My oncologist told me that Denosumab stays in your system for a long time & most oncologists tailor the frequency to your individual requirements alongside treatment. Hope that helps. 

Helen x

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Re: Denosumab

Hi Woodsbonsai,

Thank you for responding.  Based on your response, I take it you have never asked your Oncologist why he/she changed you from 4 weeks to 8 weeks?  It does seem strange since you are going to the hospital every 4 weeks anyway for your palbociclib.  Could I ask you, are your lesions in your vertebrae sclerotic or lytic?  It normally says this type of thing in your CT scan reports.  Mine are all sclerotic so this is why I am kinda questioning whether my injections could be done less frequently.   

 

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Member

Re: Denosumab

Hello SoViolet21

I was diagnosed with sbc round about the same time as you.  In my case it is in two of my vertebrae, one of which has collapsed.  I am taking similar meds to you, but at different times.

Letrozole 2.5 mg - daily

Palbociclib - 100mg - daily for 3 weeks, then one week off

Adcal-D3 - two tablets daily

I don't have the Zolodex, but I do have Denusomab injections.  I started off having them every 4 weeks which slotted in with my hospital appointments.  For the last year I have been having them every 8 weeks.  I had my first one since lockdown a few weeks ago and the Breast Care nurse seemed surprised that I only have them every 8 weeks and went off to check.  Everytime I speak to the oncologist I double check that's the schedule they want me to follow and they confirm that's correct.  You are the only other person I've come across that's different to the 4 - 6 weeks schedule.

I'm probably not a lot of help, as I have absolutely no reason why this should be!  

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Member

Denosumab

Hello ladies,

I was diagnosed with secondary breast cancer in May 2017 as it was identified that the cancer had spread to my spine and pelvis.  I was prescribed the following drugs that, after a few months, ended up being:

Letrozole 2.5mg (one tablet daily)

Palbociclib 75mg (3 weeks on, 3 weeks off)

Zoladex 10.8mg (every 12 weeks injection into the stomach)

Denosumab 120mg (every 6 weeks injection into the stomach)

Adcal-D3 (1 tablet daily)

I am aware that cancer patients needing Denosumab injections generally have them every 4 weeks.  I was moved to every 6 weeks to tie in with my chemo cycle (palbociclib) so that I didn't have to keep going to medical appointments all the time.  I am aware that osteoporosis patients also have denosumab injections and these are generally administered every 6 months.  If this worked for cancer patients then I would love to go to 6 monthly injections instead of 6 weekly but I've no idea if this is viable or not for cancer patients.  I think there is currently a study looking into whether denosumab could be administered every 12 weeks instead of every 4 weeks (whilst still having the same effect) but this study doesn't report its findings until December 2021.  

Just looking to find out if anyone out there has their denosumab injection at any other interval other than 4 weekly?  I'm aware that many Oncologists, up and down the country, do individual treatment plans for their patients that don't necessarily conform to the "normal" guidelines so would love to know if anyone has anything different when it comes to Denosumab.

Thank you.