Has anyone experienced leg pain while taking Orgovyx?

So, asking for a friend.
Age 80+, had radiation a year ago then put on Orgovyx, been coping with it fairly well until recently but now has severe pain requiring a cane to walk at best, just prescribed an opiate pain killer by PCP. I don't know of any PSA or other test results recently, but at what point does one stop with this treatment? "Oh yes, lots of people get pain" is not much of an answer. Neither is, "Orgovyx (relugolix) is taken once daily for as long as it remains effective and side effects are manageable." If there's pain, how do we know WHY there is pain and if this is now unmanageable?

I guess it comes down to whether radiation+ADT really kills off the cancer or whether it is highly likely to return the moment you stop, and it seems many/most doctors think it's more the later. Just asking for any views or perspectives that might help.

I also just looked at the very long thread on "ADT, maybe not?" and will give that link to my friend. Thanks, and in advance.

xahnegrey40, thanks.
As I understand the story he'd been watching his PSA in the danger zone for several years and then about a year ago it spiked up, he was further diagnosed and sent immediately for radiation, and afterwards started ADT, but I'll check back on that. Don't believe they found any bone involvement at that time.

He's had various aches and pains for many years but not diagnosed with anything, was still doing a fair amount of running up to a few years ago, last marathon (or half?) was, oh, must be a while now, maybe around age 70+? But very little to none in the last year. He's out and about every day just not as athletically as before.

He's not talking to a lot of people about this but I've talked nutrition and general health with him often enough for many years. I will also see if his PCP is referring him back to the oncologist as you suggest. Thanks for your suggestions.

So, asking for a friend.
Age 80+, had radiation a year ago then put on Orgovyx, been coping with it fairly well until recently but now has severe pain requiring a cane to walk at best, just prescribed an opiate pain killer by PCP. I don't know of any PSA or other test results recently, but at what point does one stop with this treatment? "Oh yes, lots of people get pain" is not much of an answer. Neither is, "Orgovyx (relugolix) is taken once daily for as long as it remains effective and side effects are manageable." If there's pain, how do we know WHY there is pain and if this is now unmanageable?

I guess it comes down to whether radiation+ADT really kills off the cancer or whether it is highly likely to return the moment you stop, and it seems many/most doctors think it's more the later. Just asking for any views or perspectives that might help.

I also just looked at the very long thread on "ADT, maybe not?" and will give that link to my friend. Thanks, and in advance.

So, asking for a friend.
Age 80+, had radiation a year ago then put on Orgovyx, been coping with it fairly well until recently but now has severe pain requiring a cane to walk at best, just prescribed an opiate pain killer by PCP. I don't know of any PSA or other test results recently, but at what point does one stop with this treatment? "Oh yes, lots of people get pain" is not much of an answer. Neither is, "Orgovyx (relugolix) is taken once daily for as long as it remains effective and side effects are manageable." If there's pain, how do we know WHY there is pain and if this is now unmanageable?

I guess it comes down to whether radiation+ADT really kills off the cancer or whether it is highly likely to return the moment you stop, and it seems many/most doctors think it's more the later. Just asking for any views or perspectives that might help.

I also just looked at the very long thread on "ADT, maybe not?" and will give that link to my friend. Thanks, and in advance.

@carbcounter oh since he was a former runner/ marathoner he may need a hip replacement..running on pavement long term causes PAINFUL hip problems in some..

( I quit running yrs ago myself..and cycle/swim now..)

So, asking for a friend.
Age 80+, had radiation a year ago then put on Orgovyx, been coping with it fairly well until recently but now has severe pain requiring a cane to walk at best, just prescribed an opiate pain killer by PCP. I don't know of any PSA or other test results recently, but at what point does one stop with this treatment? "Oh yes, lots of people get pain" is not much of an answer. Neither is, "Orgovyx (relugolix) is taken once daily for as long as it remains effective and side effects are manageable." If there's pain, how do we know WHY there is pain and if this is now unmanageable?

I guess it comes down to whether radiation+ADT really kills off the cancer or whether it is highly likely to return the moment you stop, and it seems many/most doctors think it's more the later. Just asking for any views or perspectives that might help.

I also just looked at the very long thread on "ADT, maybe not?" and will give that link to my friend. Thanks, and in advance.

I was on Lupron for a year then off for a year. I'm now in month 8 of another round of ADT. After 6 months of Lupron I decided to switch to Orgovyx for various reasons. I have been suffering from increasing peripheral neuropathy in feet for some time which can be attributed to degenerative disc disease, but also to ADT. In the last week (8 weeks now on Orgovyx) I've developed rather severe pain in my one ankle which I was attributing to neuropathy but now seems more likely joint related and maybe we can blame on Orgovyx. Interestingly, the morning pain and hobbling for an hour (mentioned above) is exactly what I'm experiencing, and also what many of us have experienced with plantar fasciitis, but for me in the ankle not the heel.
I'm seeing my PCP today and trying to connect with my Urologist.

So, asking for a friend.
Age 80+, had radiation a year ago then put on Orgovyx, been coping with it fairly well until recently but now has severe pain requiring a cane to walk at best, just prescribed an opiate pain killer by PCP. I don't know of any PSA or other test results recently, but at what point does one stop with this treatment? "Oh yes, lots of people get pain" is not much of an answer. Neither is, "Orgovyx (relugolix) is taken once daily for as long as it remains effective and side effects are manageable." If there's pain, how do we know WHY there is pain and if this is now unmanageable?

I guess it comes down to whether radiation+ADT really kills off the cancer or whether it is highly likely to return the moment you stop, and it seems many/most doctors think it's more the later. Just asking for any views or perspectives that might help.

I also just looked at the very long thread on "ADT, maybe not?" and will give that link to my friend. Thanks, and in advance.

I was on Lupron for a year then off for a year. I'm now in month 8 of another round of ADT. After 6 months of Lupron I decided to switch to Orgovyx for various reasons. I have been suffering from increasing peripheral neuropathy in feet for some time which can be attributed to degenerative disc disease, but also to ADT. In the last week (8 weeks now on Orgovyx) I've developed rather severe pain in my one ankle which I was attributing to neuropathy but now seems more likely joint related and maybe we can blame on Orgovyx. Interestingly, the morning pain and hobbling for an hour (mentioned above) is exactly what I'm experiencing, and also what many of us have experienced with plantar fasciitis, but for me in the ankle not the heel.
I'm seeing my PCP today and trying to connect with my Urologist.

So, asking for a friend.
Age 80+, had radiation a year ago then put on Orgovyx, been coping with it fairly well until recently but now has severe pain requiring a cane to walk at best, just prescribed an opiate pain killer by PCP. I don't know of any PSA or other test results recently, but at what point does one stop with this treatment? "Oh yes, lots of people get pain" is not much of an answer. Neither is, "Orgovyx (relugolix) is taken once daily for as long as it remains effective and side effects are manageable." If there's pain, how do we know WHY there is pain and if this is now unmanageable?

I guess it comes down to whether radiation+ADT really kills off the cancer or whether it is highly likely to return the moment you stop, and it seems many/most doctors think it's more the later. Just asking for any views or perspectives that might help.

I also just looked at the very long thread on "ADT, maybe not?" and will give that link to my friend. Thanks, and in advance.