Question for men on Denosumab (Xgeva)

[YostConner]

Has anyone here on denosumab experienced the rare side effect of atypical femoral fracture? I’ve had mets at the top of my right femur for some time, and there’s rarely been pain. This week’s bone scan shows the mets creeping downward about to the center of the femur. For the last 24 hours, I’ve had pain in that area despite fentanyl and oxycodone (both relatively low doses). I’m pretty sure this is not just imagined pain arising from the knowledge of the mets. I’ve been dealing with pain in my back and rib cage long enough to know what’s real. I hope it’s only mets pain; a fracture would ground me for a while. All day I’ve been worried it’s either fractured or about to fracture. Anyone who’s been through it might give me some insight. I’m scheduled to see medonc Jan 24. This will definitely lead to some discussion. Thanks, Yost.

[Tjc1]

I'm sorry i dont have anything for ya except encoragement. Fight on brother!

[Hidden]

I would want to get imaging. I had a similar situation when I was first diagnosed. They were really concerned because I had an 8 cm lesion on one of my femurs. They did CT and MRI imaging to make sure there wasn't a fracture. There wasn't.

On an interesting note: I had previously travelled to Portugal and at that time, my US doctor suspected I had PCa, but I hadn't started treatment. I was in so much pain while in Portugal, I got a local doctor there to check me out at my my hotel (30 Euros cost). I told him I was concerned I might have a fracture so he moved my legs to various postions and asked me each time if it hurt. I said no after each move. Then he said, "you don't have a fracture". I told him I would pay for x-rays, he said "they are free here, but you don't need it"

$600 in co-pays later, my doctors in the US agreed. Either that guy was really lucky or knew what he was doing.

[YostConner in reply to Hidden]

I guess if you scream, it’s broken.

I expect my doc to order imaging if this persists. Thanks!

[Hidden in reply to YostConner]

He spent about 20 minutes moving my legs around to different positions. I probably would have screamed if I had a fracture. Hard to believe the doctor was just lucky. Not bad for a thirty Euro "house call" without any medical insurance. He also wrote me a prescription for some opiate-based pain meds, a sedative and also got a stool softener at my request. They apologized about how expensive it was (25 Euros). I was thinking, maybe I should just stay here and see if I can get treatment.

[erjlg3 in reply to Hidden]

Good true story Gregg! Wow!!! 30 Euros!!!

🌼Jackie

[Hidden]

what suffering Yost ! I’m sorry . That sucks.. man..

[erjlg3]

I wish and pray that your pain goes away quick Yost!

🌼Jackie

[Moespy]

Thinking of you Yost and wishing you get relief.

[Drcrunch]

Slightly hitting your fist against the bony portion of thigh should cause an instant increase in pain thru bone conduction. Go slow, please. This is taught to interns learning to do physical exam. Find out if it may fracture in future, you need imaging.

[RJ-MN]

Sorry to read this, Yost. I feel for you and am responding out of respect and empathy with little concrete knowledge to add. I am now on my third round of denosumab over the years as PSA is spiking as I come to the end of a 4.75-year clinical trial on enzalutamide & ProstVac-Tricom@ the NIH. Scan uptakes on mets on sacrum & ribs are increasing, but no new mets have kept me on the study. Denosumab has been added once again as a way of slowing down the mets' reconstruction. But I have no experience whatsoever of femural mets. Wisdom to you, dear colleague!

[Tfly]

My Eric walked around (very painfully) for quite some time with a femoral fracture just below the hip. He ended up getting a total hip replacement. My advice would be get an xray.

[curious-mind1]

My dad just started Xgeva about a month ago. Last week he had serious pain in upper right shoulder area. This was not an area he had mets before, but the pain was really uncomfortable for him. MO said Xgeva could cause unanticipated bone pain in random part of the body, they just can't say it'll always happen or when, because there doesn't seem to be a specific pattern that usually happens.

Maybe a scan would clarify the situation?

Arthur

[leo2634]

Hi Yost I've been on Xgeva for a year now along with Zytiga,and ELIGARD injections . My last bone scan in October said Mets have subsided. I have back pain under right shoulder blade that is a considerable annoying pain I'm not sure if it's a pulled muscle or something to do with the Mets . I have mets in the rib cage on both sides but I remember when I was first diagnosed with A PC the Met in my pelvis area was unbearable until my first Lupron shot I hadn't slept for weeks on end and this is not the same pain. I hope you find the answers you seek and keep fighting. Leo

[Break60]

To the contrary, I started xgeva after a 9 mm met was found on right femur which I hit with 30 gray of SBRT . No recurrence . Bone density scan normal.

[j-o-h-n]

Pain can really be a pain...Check it out...ASAP

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/14/2019 5:38 PM EST

[JimVanHorn]

I needed Xgeva every 6 months for 18 months in my 3rd year of Lupron (Eligard - generic). I fell off a curb and did a swan dive onto parking lot and nothing broke. I was lucky. Now any doctor is going to want an x-ray of your right femur, so why not call his office, tell them the problem and schedule your x-ray? You don't want it to heal wrong and have to be broken again. If it is nothing you will at least know. I wish you the best of luck with this problem.