I just want to give folks a head-up on my wife's experience with XGEVA (Denosumab). This is by no means intended to move folks away from XGEVA, as every person responds differently to these agents and the following is probably not typical. In my wife's case, she moved from Zometa to XGEVA last September. By November she was experiencing a number of muscle and bone pains that kept us on our toes for progression, but each time the scans came back negative. More recently, she had her XGEVA injection three weeks ago and the very next day she developed a strong pain in her left hip. Over the next three weeks she literally developed a rotating series of pains in her back, left shoulder, right shoulder, left elbow, right elbow, left hip, right hip, right leg and left ankle that would come and go with no set pattern. The pain would range anywhere from a 3-7 on a scale of 1-10 and made it very hard for her to get any sleep. In any event, we remained pretty certain that what she was experiencing was XGEVA related and not progression. She went through her quarterly scan at the end of this week (this time a PET) and everything came back negative (that is, clear) (editorial note: Whoo Hoo!). Thus, it is now our strong suspicion that the rotating pains are related to XGEVA, so she is going to take two months off of the bone strengtheing agents and then move back to Zometa. Of course, if the pains do not go away in the near-term I willl let you know, but we have every expectation that they will.
09/2010: Wife, Hispanic, DX at 46 with NSCLC, Adeno, Poorly Diff. (EGFR +, Exon 19) (T790M negative, we think); source tumor left hilar mass, 5 bones mets, one tiny brain met, and one tumor at left ovary;
10/2010: radiation to lung and breast bone, 150mg Tarceva;
08/2011 PET and CT Scans: source tumor and bone mets resolved; ovarian tumor stable (Tarceva reduced to 100mg);
10/2011: ovarian mass removed per hysterectomy;
08/02/2012 PET: all’s clear