XGEVA Experience - 1246361

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dan@hp
XGEVA Experience - 1246361

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.

Patient Bio:
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

catdander
Reply To: XGEVA Experience

Dan, Thanks so much for your input, your disclaimer as an individual experience, and especially the editorial note; all of which are very helpful. My husband never took XGEVA as it was not approved when he was dx with bone met. He took Zometa for several months before having a PET that suggested inflammation in the mandible, at which time he took a break from zometa. He never resumed the drug and hasn't had any or any more bone mets detected. The jaw inflammation was most likely due to a broken crown stub irritating the area and no jaw bone problems emerged.

There are several people who have suggested a connection between XGEVA and pain. I wonder if it is causing more pain than zometa. 3-7 out of 10 sounds pretty significant whether morning or night.

Your plan moving forward sounds very appropriate. Keep us updated,
Janine
forum moderator

Dr West
Reply To: XGEVA Experience

I haven't seen that with my own patients, who probably in the range of a few dozen in total, so certainly not the exhaustive world experience. I have had a few who have noted some transient pains and at least one who requested to go back to Zometa due to discomfort. Most of my patients have found it very easy to tolerate, but it's good to learn about the range and have a flicker of recognition of one of my own patients describes something similar.

I hope she's feeling more comfortable soon.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

dan@hp
Reply To: XGEVA Experience

Thanks much, Janine and Dr. West. Your comments remind me that I forgot what is probably an important data point, and that is historically my wife has a history of having an unusually sensitive body. In this case, time will tell.

Jazz
Reply To: XGEVA Experience

Thanks for sharing this experience. I recently read of a new warning for Zometa, that atypical femur fractures have been noted in patients on Zometa; injury cause by little or no trauma, followed by pain in the thigh area for weeks or months before the fracture is actually discovered.

My clinical trial oncologist, Dr. Camidge, advised me to stop Zometa as I've been on a monthly schedule for over a year. I believe he typically prescribes a 6-dose course and if things are stable, stops until bone mets are active again. I think Zometa stays in one's bones for 2 years. He told a story of a patient who developed osteonecrosis of the jaw who told him, "it's worse than having cancer!" Prior to Zometa, I was on Aredia (pamidronate) for two years, so I'm a bit weary of the risk of ONJ.

Best wishes for resolution of your wife's pain.

Jazz

Dr West
Reply To: XGEVA Experience

It's fair to say that there just isn't enough information on how much may be enough or even too much. I often have patients do monthly Zometa (zoledronic acid) x 3 months, then continue it on a quarterly basis to balance between preventing skeletal-related events and mitigating the risk of cumulative side effects from it. I'm still trying to determine an optimal long-term schedule with XGEVA (denosumab), but I think the same rationale applies there as well.

Unfortunately, we can't expect the companies that make more money by having these drugs given frequently run expensive studies to clarify whether you can do just as well or better by giving them less frequently. And though it would make sense for insurance companies or the government (paying for these meds in the form of national health care systems, or Medicare/Medicaid) to run such trials that might show that less is as good as or better than more, it appears that they won't get around to taking that kind of initiative.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

dan@hp
Reply To: XGEVA Experience

We just completed my wife's 3 month review with her oncologist and, as promised in August, I want to provide an update on what we believe was her XGEVA-related bone/muscle pain. In short, nearly all of her rotating pains have now resolved. At this point, she has been off of XGEVA since July, so we do assume that there was a correlation (but we do understand that one can never be sure). In particular, a pain in her upper back that began late last Fall after she began XGEVA and got progressively worse is now improving substantially. In any event, she is going to go back to Zometa every other month starting in January.

Patient Bio:
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 due to side effects);
10/2011: Ovarian mass removed per hysterectomy;
08/2012: PET Scan: all abnormalities resolved;
11/2012: CT Scans & Brain MRI: bones mets stable, no new lesions, brain clear

catdander
Reply To: XGEVA Experience

Hi Dan,

Thanks for the update. How great to hear she is stable, I know you both are breathing easier.
Good luck with the zometa and the new every other month schedule. From what I understand as a lay person less is quite likely to be as good or better than more often. It reminds me of how much we don't know and what an art form thoughtful cancer treatment is.

Janine

Dr West
Reply To: XGEVA Experience

Glad to know she's doing well overall, and thanks for the update! Enjoy the Thanksgiving holiday.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Medical Oncologist
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: XGEVA Experience

So happy to hear that your wife is feeling better. . .Yay!

Laya