I have seen mentioned using a bone agent, what is it and for what reason is it used I have checked the ACOR site and havent found it explained. does anyone have an answer. thanks in advance
If you have any bone metastases due to RCC then it is absolutely essential to take a bone agent - either Xgeva (Denosumab) or Zometa (Zoledronic Acid) along with whatevery other TKI or targeted drug you are taking.
These bone agents work to strengthen the bone. They take the calcium out of your blood stream and get it into your skeleton. Therefore, you also should be taking a calcium supplement when on either one of these meds.
In my case, for example, I take both Sutent (50mg/day) and get a monthly shot of Xgeva (120mg). I only have bone mets. Sutent alone is usually not very effective against stand alone bone mets. But when you add in an bone agent like Xgeva there is an unique synergy that allows them both together to become very effective indeed.
I discovered mets on my sacrum (base of spine) and left femur (hip/thigh) back in July. My latest nuclear bone scan was done in November. My bone cancer specialist told me that my response has been, so far, "dramatic" - even in such a relatively short time. My sacrum now appears "normal" and all the lesions on my femur are only showing new bone growth. So, while I am not quite NED yet, I am heading there - I hope!
There is another drug on the horizon that is showing some very exciting results for those who have both bone mets and solid mass tumors. It is called Cometriq (Cabozantinib). It is not approved for mRCC yet, but it was recently approved for advanced medullary thyroid cancer. That means it can be gotten off label by your oncologist - but your insurance may or may not cover the cost.
BTTW, in recent studies Xgeva has shown better long term results than Zometa. Also, it does not stress the kidneys (but Zometa) can.
Both of these drugs can lead (rarely) to ONJ - Osteonecrosis of the Jaw.
There is lots of good information about all of this is available at the KIDNEY_ONC website.
Neil, in the context of the raging debates about low fat v low carb diets etc, the point gets made that we have been erroneously sold the line about the merits of dairy foods for bone health. It's said that this is misinformation and that needing calcium 'for your bones' is nonsense. There are several crucial metals but what's really needed (it's reckoned that something like 90% of Americans have some degree of deficit) is magnesium. The balance between the metals is important and the big improvement that's needed is more magnesium in the diet (look to old favourites of mine like spinach, wheat germ, nuts and bananas!).