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 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

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