XGEVA Experience - 1246361

dan@hp
Posts:18

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

Forums

catdander
Posts:

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
Posts: 4735

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

dan@hp
Posts: 18

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
Posts: 279

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
Posts: 4735

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

dan@hp
Posts: 18

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
Posts:

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
Posts: 4735

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

-Dr. West

cat1
Posts: 1
Diagnosis with multiple myeloma July 2015. Has a stem cell transplant in January 2016 and have been in remission since. I get xgeva every 3 months.

I have multiple myeloma and just had a full body Ct scan. It is stable no new lesions. I do have a lot of lesions.
My oncologist gives me xgeva every 3 months. My myeloma specialist says I should get it every month.
I have peripheral neuropathy from the velcade treatment but I have bone pain in my legs to the point I can’t sleep. I was prescribed gabapentin but I don’t like feeling dopey the next day. The only thing that helps is ibuprofen which I don’t like to take regularly.
My question is is xgeva causing the leg pain or is it the lesions even though they are stable and no new ones.

Cheryl Tooker

JanineT GRACE …
Posts: 628
GRACE Community Outreach Team

Hi Cat, Welcome to Grace. I'm sorry you're having these problems.

 

Although xgava was studied and FDA approved at a dose of every 4 weeks it's not unusual for oncologists to give it every 12 weeks for long term use. There seems to be success using it this way and even a small study suggests it's beneficial at this dose (the study is small and not to be taken as an absolute). You're not likely to see expensive studies done to prove their drug works just as well at a much smaller dose...drug studies are designed to use the maximum dose that is safe to take, this gives the drug the most opportunity to work and it also allows the largest profit.

 

So there are drugs that oncologists have given in smaller doses to lessen side effects that have been found to still be efficacious. I don't know the reasoning behind your oncologist's dosing of your xgava but it may be so you can take it longer and if it's working then all the better.

 

We can't guess why your having bone pain but it's important to have that checked out by your doc. It sounds like they've scanned the painful area to check for fractures or other changes. If it's thought to be from the drug a break may be in order. Unless there's an unrelated reason not to take ibuprofen, it's specifically suggested on xgava's site as a treatment for painful side effects of xgava.  I know someone who takes gabapentin on occasion when pain is just too much even though the literature says it has to build up in the system behind helping but that's not the case for some. 

 

I'm sorry I'm not giving you answers that change what you do.  I hope you get some relief soon. 

All the best,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.