Denosumab

Hi Suzie1985

I'm so pleased to read your news re Capecitabine as I'm due to start it soon and welcome positivity  - any tips??!! I've ordered my Udderly Smooth cream already!

Regarding Denosumab, I've been having 4-weekly injections since July 2019 and have had no side effects whatsoever. I warm the syringe in my hands for a couple of minutes (the nurses are fine with this) and then they do a quick stab into my stomach. I must say, lockdown has increased the available area!!!!!!!! It's not painful.

Glad you are feeling well :)

Thank you for replying. That is good to hear! I am going to be taught how to give myself the injections due to the current situation! Not sure how I feel about that. I too have ample space to choose from. The cape hadn’t affected my appetite  As I have not suffered much in the way of side effects apart from the peeling of my hands and feet I can only recommend that you start with the udderly smooth as soon as you start the cape. I didn’t have it for the first two cycles, so get a head start! Keep yourself well hydrated. Good luck with the treatment and I hope it is as kind to you as it has been to me

Hi I’ve been taking Capecitabine and Denusomab for two and a half years.  I have the denusomab injection in my arm - it stings a bit but then it’s gone.  Initially it was hard getting used to the new regime - was sick a couple of times with the tablets but I always take Cyclizine anti sickness pills.  I usually get mouth ulcers in the third week of the three week cycle, but they don’t really cause me problems.  Doctor said to use bonjela if they were really bad, but I haven’t had to use this.  Also my ring fingers started peeling, so stopped wearing rings and was prescribed Zerodouble which is a highly moisturising emollient gel and it’s now under control.  Although having to wash hands umpteen times a day now don’t really help. Sometimes have a bad belly varying between diahorrea and constipation but again tablets can control it.  All these minor ‘inconveniences’ can be controlled once your body adjusts so please don’t worry. To be honest I don’t really give it a second thought !  Everything is manageable.  Good luck!

I find it really encouraging that you have been on it for two years! I recently had a CT scan with very positive results. Everything was responding to the Cape. I hope I am lucky enough to be able to stay on it for that long! It’s strange how side effects are different for everybody, I am glad they are minor for you too! 

Hi

I started denosumab in December 2019 and have it once every 12 weeks as an injection.

I can choose whether to get the injection in my arm or stomach. The first couple gave me flu like symptoms a week in and with covid being around it sent me in a panic!

But it's got easier and I didn't notice anything after my most recent one. It's straight forward - just annoying to have to book to get it done and faff at hospital. 

Try it and see I'd say x

Hi

i have been having monthly injections of denosumab since 2013 (giving myself) and I’ve never had any problems at all. I also take Vit D and calcium. 
hope it all goes ok for you

Wendy

Thanks for the replies. With one thing and another I still haven’t started them! I feel better about it after reading your replies and hope to start them as soon as I am able to get to the hospital to be shown how to do them!

Sue

I asked about doing my own and was told hospitals don't allow that?! I'm going to ask again!!! 

I want to do my own too, my son is Type 1 Diabetic, it’s a very similar injection so don’t understand why we can’t administer our own at home!

I have just read your message and it fills me with confidence I have been very anxious about changing medication and today have been for my initiation and signing up for Cape. So hope all the side efects are mild for me too.  I was on EE for two years and in the beginning it was just awful.  I managed to get over the side effects and it served me well.  Just hope I can continue to stay well and want to play golf still, I hope I don’t end up sitting on the  loo instead.  Stay well and keep safe  

Susan