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

Parents
  • Hi Ed and Lee.  Hope all is well and wondered how you are getting on this week.  I feel extremely tired and not sure if it’s the disease or the Denosamub plus also started on Letrozole this week.  I am still waiting for full results of bone biopsy and am emotionally exhausted.  Trying to go out as much as possible to forget about it but once home I struggle with what is ahead.  Hope you enjoy your weekend 

  • HI Cosmopolitan and lee.

    This week has been ok other than backache a flare up of the rash and the usual fatigue. Just one dark day when I could not lift my spirits and the world weighed heavy. Had blood test at the clinic today as no appointments at phlebotomy over the bank holiday. Get first injection of denosumab next week at same time as cemipulab. I hope there are minimal side effects as I plan to drive 4 hours ( with lots of breaks) to visit family. 3 days after the jab. Been on light duties in the geenhouse pricking out vegetable plants. I find it hard to stand still for a long time, it kills my back, so take regular breaks to either sit down or go for a walk.

    I hope your week has gone well and that the Letrozole has been ok. Keeping active as much as you can seems to be good for mental and emotional health and a slightly better nights sleep. Take good care of yourselves.

    Ed

Reply
  • HI Cosmopolitan and lee.

    This week has been ok other than backache a flare up of the rash and the usual fatigue. Just one dark day when I could not lift my spirits and the world weighed heavy. Had blood test at the clinic today as no appointments at phlebotomy over the bank holiday. Get first injection of denosumab next week at same time as cemipulab. I hope there are minimal side effects as I plan to drive 4 hours ( with lots of breaks) to visit family. 3 days after the jab. Been on light duties in the geenhouse pricking out vegetable plants. I find it hard to stand still for a long time, it kills my back, so take regular breaks to either sit down or go for a walk.

    I hope your week has gone well and that the Letrozole has been ok. Keeping active as much as you can seems to be good for mental and emotional health and a slightly better nights sleep. Take good care of yourselves.

    Ed

Children
    1. Hi Ed and Lee I presume the fatigue is from the disease. Lots of hospital appointments also make us tired.   Good luck with your injection next week and something to look foreard to with visiting family.  I agree with keeping busy!   All the best 
  • Good morning Ed and Cosmopolitan,  I also have a had a bad week.  This week has been the worst week fatigue wise since I started this journey.  My husband thinks it is because we bottled some homemade wine last weekend and I had to do a lot of standing.  I am not sure but I am still in bed.  I do find that funnily enough excercise is the best for the back and hip pain.  Sitting still is a no go.  I hope you get on okay with your injection Ed and dont forget to ask about the Adcal.  Four hours is a long drive with spine mets.  What does pricking out vegetable plants mean Ed?  Take care both and have a lovely Easter Sunday.

    Love Lee x

  • HI again Lee

    I hope you can soon be out walking your dogs again. That is extreme fatigue if you are confined to bed. I am learning to pace myself but it doesnt come easy as Ive been used to getting lots done each day. If I force myself and overdo it I pay next day. I need to do the trip to visit family whilst I am still able to. This may be the last time driving there.

    Bottling up 60 bottles wine in one session is quite a big feat. No wonder it has hit you. I also do homemade but cider and beer instead of wine. I put it in 4 gallon casks so not so arduous a task. I have found though that drinking alcohol reduces my energy and I now limit myself to a single glass with my evening meal and then not everyday.

    Pricking out vegetables - instead of sowing seed direct into ground they are sown into trays or modules first in a greenhouse and the resulting small plants are transplanted into the ground. The individual modules sometimes have two plants in each and need thinning out. Or in trays of hundreds of plants need pricking out into individual modules or small pots to grow on. Hope you have a better day today.

    Ed

  • Hi Ed.  Sorry I didnt mean I had been in bed since last Sunday just this morning I have been really lazy.  Very interesting about the pricking out of vegetables.

    Lee x

  • HI lee

    Im relieved to hear you are just having a well deserved lie in. I hope you managed to get out to  walk your dogs. For the first time in months I slept all night 7 hours. A good day today.

    Ed

  • Hi Ed,  is it today you have the injections?  I want to wish you luck and also to say enjoy your time with family.  Hopefully you get some more good nights sleep.

    Lee x

  • Hope you all had a good weekend.  Would like to join Lee in all the best with  your injection   Enjoy family time 

  • Thanks both lee and cosmopolitan for you kind thoughts. I get my regular treatment plus the Denosumab tomorrow. Not worried about the injection due to your positive feedback about it. Will give it a day to make sure there are no adverse effects then visit family driving with frequent breaks to stretch back and legs and rest. Hope you are both getting on ok.

    Ed

  • Hi lee and cosmopolitan. Demosumab injection went ok with no problem side effects as of now. Thanks for your support and reassurance I did have slight anxiety about having it. Usual fear of the unknown type stuff. Hope you are both getting on with and enjoying life to the best.

    Ed

  • Good morning Cosmopolitan and Ed.  I am so glad that the injections went well.  Hopefully you dont get any side effects.  Are you going to visit your family tomorrow?  Have a safe journey and enjoy precious family time x  Cosmopolitan I was just wondering what treatment you are having?  Hope you both have a good day.  Sun is shining here, going to walk my dogs in the woods in a bit.

    Lee x