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 Lee

    Can I ask you if you get pain in other areas from the cancer in your spine and not just in the spine area. Ive got pain on the lower edge of my rib cage the scan shows no cancer there and no broken ribs. The doctor suggests it is referred pain from the affected vertebra. I am also getting tingling in my shoulder blade and numb fingers from time to time. Had a lovely week away to Portugal temperature mid 20s perfect. Feel so much better for a break away. Hope all is well with you.

    Ed

  • Hi Ed,  so glad you enjoyed Portugal.  I loved it and will definitely go back.  Did you manage to get insurance?  I get pains in my collar bones and upper arms  (I have a feeling that it might be the way I sleep)  and recently having been having really bad pins and needles down my left arm into my fingers.  I haven't got rib pain although I do have mets in my ribs as well.  Before I had the radiotherapy I got pains in my shoulder blades terribly if I lifted my right arm but onc says it was from the tumor on spine.  The spine controls so many nerves in our body.  Hope you feel better , have you still managed to steer clear of the opioids?  Big hugs.

    Lee x

  • Hi Lee

    Thanks for replying it would seem that you also get pain in other areas but it originates from your spine. So what my doctor says fits in.  I got a quote on the telephone from Insurancewith whereas online they declined to quote. I didnt bother having insurance in the end and took the risk myself. I cannot get comfortable in bed which leads to aches and pains the following day. Cannot find the correct pillow too high too flat too hard too soft for my neck and head. Still on paracetamol and Naproxen but have been offered strong painkillers if needed. Tramadol or oramorph but holding off as opiod painkillers give me constipation itchy skin and nausea plus make my thinking dull. Take good care and hope you are still able to get out with your dogs to enjoy the early Autumn sunshine. 

    Ed

  • Hi Ed,  I had my three months CT scan yesterday and I couldn't lift my arms and hold them straight up over my head.  That is something new.  The onc drew a map of spine and showed me what vertebrae's controlled what nerves and I think one of the tumors is pushing on the nerves for my arms.  Anyway that is my guess. I have just bought a new orthopedic mattress to see if it helps.  Just a question have you tried the udderley smooth cream, I found it is good for the rash.  I am still walking my dogs every day and I enjoy the woods when all the leaves are turning colors, it is so pretty.  Take care and big hugs.

    Lee x