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

  • Thanks Ed.  Nice to hear from

    you.  Mine was in the tummy and will be monthly.   Tiredness is a big thing especially for me who is used to being on the go all The time.  Perhaps a bit too much at times!!!  Also have nausea but hopefully the pain will subside.   Good luck with yours and let us know how you get on.  Enjoy your Sunday 

  • Thanks Lee.  Mine didn’t hurt at all but we are all different.  Used to having injections in tummy as have 6 monthly ones for my cholesterol which no doubt will go up with cancer treatment.   I am trying to keep active and still trying to deal with the news as only diagnosed on 20th March.   Waiting for remainder of treatment plan and then hopefully will feel better about it.  As you say concern is not being mobile which is a big worry.  Enjoy your Sunday 

  • A question for lee, cosmopolitan and anyone else taking Denosumab XGEVA for metastatic bone cancer.

    Do you also take vitamin D3 and Calcium supplements to help with your bones. If so what strength Vitamin D3 and what amount of Calcium. Thanks in advance.

    Ed

  • Hi Ed, yes I have been prescribed Adcal which is a Vitamin D and calcium supplement.  I take this twice a day.  Your oncologist should prescribe this for you definately.  

    Lee x

  • Hi Ed I have been prescribed the same as Lee.   Def very tired as been asleep for most of afternoon  which for me is unheard of to sleep in day.  Hopefully this will reduce with time!  

  • I have waves of sudden tiredness and I think all you can do is give in to them. Yesterday was fatigued fell asleep at 4pm for 2 hours. Today Ive done lots and needed just half an hour rest I hope the Denosumab does not add to the fatigue. It has been very good to get feedback from you and lee.

    Ed

  • Hi Ed and Cosmopolitan,  yes I also worry about my jaw as it was dislocated for many years and was in pain but didnt know why.  I had an op to put it back in place, so okay now just cracks sometimes.  Dentist told me last week only really need to worry about necrosis if having an extraction. Today I am really tired as we bottled 60 or our home made wine yesterday.  Maybe I should stay in bed and drink it today (ha ha).  You both must join the Living with Incureable cancer - patients only on Macmillan site.  There are so many inspirational people and there is a thread for hobbies, gardening or just ranting if you want to.  Everyone is in the same boat for incurable cancer.  I hope you both have a good day and am now going to make myself have a shower and walk my dogs.

    Lee x

  • 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

    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