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

  • Hi Ed,  I have the denosumab injection every four weeks in my stomach.  I have metastatic breast cancer with mets in pelvis, spine, ribs, skull etc.  I cant say I have had any side effects from this injection.  I have some side effects of fatigue and really bad rash (like I see you have from another post).  But I dont think it is from the injections, probably the other medication.  When are you starting, good luck.

    Lee

  • Hi Lee

    Thank you for your reassuring post on Denosumab. As usual there is a long list of side effects so it is good to get real life feedback from somebody receiving the treatment. Like you a recent scan showed up mets in multiple locations. I start Denosumab in 2 weeks time alongside immunotherapy.  Thank you for taking your time to reply and I wish you the best with dealing with this awful disease.

    Ed

  • Hi Ed,  yes good luck to you as well.  As you say it is a c---p disease.  I am trying to take one day at a time.  I was only diagnosed in September 24 so relatively new for me.  Are you in pain with you mets?

    Lee x

  • Hi Lee

    Had advanced skin cancer a long time only recently diagnosed with bone mets. My back and pelvis hurt and it is difficult to sleep ccomfortably but not in severe pain.

    Ed

  • Hi Ed I had cancer twelve years ago and came back last year with the bone mets.  My back hurts too but I manage the pain with tramadol and cyclizine as tramadol makes me feel sick.  Doctor prescribed morphine but I dont want to take it until I really have to because I tried it and it didnt agree with me.  Are you on the Macmillan forum there is one for Incureable cancer patients only.  There are so many positive inspirational people on there and very supportive.  Being nosy here, but are you really a farmer? :) 

    Lee x

  • I agree both tramadol and morphine make me feel sick plus constipated. I also like to have a clear head and not spend the day doped up. I will put off the day as long as possible. Thanks for the pointer to McMillan Ill take a look. Yes I really am a farmer retired but still working a little as it is a way of life rather than a job. Plus it is good for my mental health to be out doing something I enjoy in the fresh air. Hope you are keeping your pain under control.

    Ed

  • Hi Lee and Ed had my first Denosumab (Xgeva) on Friday for bone mets following breast cancer 14 years ago. Feeling tired and pain in ribs and back horrendous but hoping it will help soon.  Some of side effects sound awful but hoping we can all avoid these!  Good luck with yours 

  • Hi Cosmopolitan

    You Lee and me have had a good run comparativly in that we have survived 10+ years from our original cancer. But it is now back and causing us grief with pain and risk of bone fractures. Hopefully the Denosumab can give us some protection. I have the first injection next week. Where did the nurse give your injection? Thigh or stomach was mentioned but they did not say which. Post back to say how you are getting on and how well you are tolerating the Denosumab. Wishing you and everyone on this forum some respite from this awful disease.

    Ed

  • Hi Cosmopolitan and Ed.

    I had my fifth denosumab injection on Friday.  I always have it in the stomach it is just easier to access than dropping your trousers (ha ha).  It only hurts a bit not much.  No side effects so far.  I hope it helps as I am so scared of damaging my back really dont want to end up in a wheelchair.  I find that keeping active helps me more than anything.  I go walking my four dogs in the woods near where we live everyday for about 1hr45mins.  When I sit still for long it seizes up and I get sore and stiff.  I have an electric heat pad on the couch when I sit down and watch TV at night, which helps enormously.  Good luck both of you .

    Lee x

  • Hi Lee

    Thank you for your posts they have given me a great deal of support and hope. Especially that you are tolerating Denosumab well. One of the possible but infrequent side effects is osteonecrosis of the jaw bone. I am at a higher risk of this due to receiving radiotherapy to the jaw 10 years ago. Ive had the dental checkup and good to go with the proviso that any future extractions are carried out at the hospital.

    I agree that excercise is good for everything to do with cancer and your long walk each day with your dogs must bring you joy. Settle anxiety and keep you fit. Ditto for me doing some work each day. It stops me dwelling on dark thoughts keeps me fit and helps me sleep a bit better at night. I too find sitting painful so thank you for the tip on using a heat pad. All the best

    Ed