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

  • Good morning Ed and Cosmopolitan.  I am glad you enjoyed family time Ed and I think it would be better to get the train or let someone else drive.  Mind you I find that even sitting in the car for an hour and half is painful when my husband is driving.  I am sorry that you are waiting so long for your bone biopsy results Cosmopolitan, I think mine came in two weeks.  I am having my sixth denosumab on 9 May as well and then have an MRI in the afternoon (found a lump in leg).  I was offered radiotherapy as a palliative treatment for pain but I understand this can only be once so I am holding back until pain becomes too much.  Are you having one dose Cosmopolitan or more and have you been offered this Ed.    I have really been enjoying the sunshine and we have been having a few BBQ s.  Last two days I have been very nauseous and Wednesday night was very sick.  Today feel lots better so off to the woods I go with the doggies.  Have they started you on any tablets Cosmopolitan yet, I take Ribociclib three a day for three weeks and then one week off.  I wish you both a sunshiny day x

    Lee x