Any one else taking Xgeva?

Gentlemen: I have posted my chemo results for the last two rounds and just completed the third on the 20th. I also received an Xgeva shot at that time. For the day of and the next two days I felt fine and even managed to clean up the garage a bit. I thought I might have turned the corner on this stuff. However on Thursday morning 2:00 am I awoke with excruciating pain in my legs and joints. Brought me straight up. Now this has happened before but only lasted a day. I am on my third day.

As I read it Xgeva has this as a side effect along with the following:
Jaw pain. Got this on Friday and thought I had been hit in the mouth. A toothache sharpness to it and all along my lower jaw both sides.
Fever. Coming and going so far low grade and Tylenol helps.
Peripheral neuropathy. Left leg and arm numb and face. Skin feels like paper and hot to touch.
I also see that it is recommended that calcium and vitamin d supplements be included. I take D but not calcium as I am prone to kidney stones. My oncologist has not recommended either supplement.

The last three days have been difficult with diarrhea then constipation then diarrhea. Overwhelming fatigue and headaches. Headaches may be from lack of hydration as I am finding it difficult to drink enough with the frequent bathroom visits. Cannot get enough to eat and lost 5 lbs since Wednesday. Food taste so bad that I gagged on a sandwich in a restaurant at lunch. A quick swig of water kept me from making a scene.

So much for situation. If you are taking Xgeva what was the critical factor that led to your taking it. Have you been advised to take calcium and/or vitamin D? What side effects are you experiencing and how are you treating them. Any insights will be appreciated.

Don

I have been on xgeva, an injection every 4 weeks, for two years now. I have experienced no side effects like you describe. However, over the last two months I have had what I can describe as joint pain or tendon pain in the outer left shoulder that only hurts when I move my arm a certain way. I chalked that up to what happens when you run a chain saw and pick it up with the left arm a lot. That is when it started.

I started on xgeva when I started Zytiga and bone mets were discovered. I have not been advised to take supplements but I do take Vit D3, selenium and pomegranate extract pills.

Don- sorry for all those bad SEs.

Thanks for the replies Dan and Faustman. I had most of the SE's just from the chemo except for the jaw pain. That really gave me scare after reading about it online. Also the SE's usually show up one at a time and last a day. These got together and partied. What really had me going was how all of the SE's showed up at once and were far more intense. My doctor said every three months but he has revised it to every four weeks. I think we will have a meeting of the minds tomorrow. I am thinking I will just not take it. I spent the last four days on my back side.

I am taking Tylenol for pain and fever but that only goes so far. I did take a calcium citrate pill this morning. I had some left over from when I took them before. No pain today just weakness and fatigue. I am worried that they will cause the kidney stones to return.

Oh well, life is great!

Thanks again and best of luck to you both. Dan, I just have to ask target shooting with stones? Are you taking the paleo diet to an extreme? :)

Don