Anyone receiving Denosumab XGEVA

Is anyone here receiving Denosumab XGEVA for metastatic bone cancer

Ive been advised to have this by injection  to slow the progression of the cancer and prevent bone fractures.

Id like to know how well it is tolerated and what side effects you have experienced.

Thanks in advance

Ed

  • Morning Lee and Ed hope all Is good with both of you.   Just realised I did not press send yesterday so apologies Ed!   I am still waiting for final results of bone biopsy which is taking y so long.  Been over two weeks and this waiting around is not good for us.  I am going to follow up again and hope to move on to the next part of treatment.    Keep well 

  • Hi Cosmopolitan,  where did you have the bone biopsy,  I had mine in my pelvis, they went in through the bottom of my back.  It is certainly one thing I never want to go through again.

    Lee x

  • Hi Lee they did it on my vertebrae where the actual tumour is.   As you say very painful.   However would rather have that again than keep waiting for the results.   This is mentally painful!   Have a good day all 

  • Hello Lee and Ed.  Hope both well.  Ed I wondered how you are tolerating the Denosumab? Hope you are having lovely time with family. I have my second dose booked for Friday 9th.  I am absolutely exhausted and wondered if this is from injections/Letrozole or the whole thing!   Still waiting for final biopsy results which is probably contributing to the way I feel and have radiotherapy booked for Tuesday.  Lots going on I know and feel a bit overwhelmed at times.  Enjoy sunshine.  

  • Hi Cosmopolitan

    Seems like fatigue is one of the downsides of Denosumab but as you point out, it could for you also be the Letrozole and for me cemiplimab, or a combination of both plus of course the ongoing cancer with its own challenges of pain, stress and anxiety. It will be a relief getting those biopsy results, as every single person on this forum comments how waiting for test results is the worst bit. At least when you know them you can move forward with your treatment plan. Had a wonderful time with family and popped in to see a few friends too, for a while this awful disease was vanquished. Id take the train for a similar journey next time as a 4 hour drive is fairly arduous when you cannot get comfortable even with hourly breaks for a stretch. I hope the radiotherapy session gives you some relief and the current fine spring weather lifts your spirits, I can see lee out walking the dogs every day making the most of it. 

    Ed

  • Good to hear you had a good time Ed.   Keeping busy is very important as it feels we can park this journey!  Thanks for your kind words.   Hope you enjoy this good weather too