Orgovyx and severe hip/leg pain

I have been taking Orgovyx 6 months and have had some aches and pains but mostly very transient and not at all severe enough for opiate pain killers- just an Aleve now and then.

I think your friend needs to go back to oncologist and maybe MRI and see if there is bone involvement from the PC- I hope not. other possibility is hip/bone damage from osteoporsis? or fall...

Lastly, usually ADT is given before radiation : 'ADT (Androgen Deprivation Therapy) typically starts before prostate radiation (neoadjuvant) to shrink the tumor, reduce cancer cell growth (since testosterone fuels them), and sensitize them to radiation, making radiation more effective and improving survival, especially in intermediate-to-high-risk cancers, by weakening cells and preventing DNA repair, with benefits seen in shorter pre-radiation courses. '

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.

@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..)

I had shin pain that lasted a few days when I was on Orgovyx. It went away as mysteriously as it came on and I never had bone pain again throughout my 6 months on ADT

ADT doesn’t kill off the cancer it shrinks it and stops it from spreading but when you stop ADT it can come right back.

ADT is known to cause joint pain. Doesn’t matter whether you are on Orgovyx, Lupron, Eligard, Firmagon Or any of the other drugs that reduce testosterone.

Here’s some more detailed information on the effects of ADT.

Androgen Deprivation Therapy (ADT) for prostate cancer commonly causes joint pain (arthralgia) due to lower testosterone affecting bone and muscle health, leading to inflammation, bone density loss (osteoporosis), increased fracture risk, and potential development of rheumatoid arthritis, with exercise, NSAIDs, vitamin D, and bisphosphonates being potential treatments to manage these musculoskeletal side effects.

@xahnegrey40, @capatov, @jeffmarc
Thanks!

My friend has been complaining about morning pains and hobbling about the house for an hour for some years now. I suppose adding ADT on top of that was bound to be trouble. Not to mention a few more years of age!

I'll encourage him to join this group himself, though he's not really done this kind of public Internet stuff before, afaik.

I thought he'd been telling me all year that his oncologist had him on ADT through January, but all of a sudden the story has slipped to June, and looking around on the topic I see various duration recommendations listed according to various decision criteria, and then there's always the out, "... unless side effects are too severe." I can see that's a hard question to answer, and thank everyone for their inputs.

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.

@joeck I definitely have morning neuropathy...and various aches and pains that ebb and flow mostly early in the day which I now attribute to 6 mos. of ADT ( Orgovyx and Nubeqa)..I have 19 more months to go.

I started with orgovyx and erleada which was a nightmare and luckily Jeff Marchi suggested Nubeqa which I tolerate much better...2 x 300 mg twice daily...( the afternoon/early eve are a bit hard to remember but getting used to the routine)

as I said in earlier post, ADT prob saves most of us but with a price.

I was on ADT for a year. It took being off of ADT for 18 months before my severe joint pain faded. My pain in my knees, elbow, and back were also the places where arthritis had been identified before I started ADT. ADT does not kill cancer, radiation does. However, cancer stem cells can escape and remain dormant in local or distant locations. Turkey Tail mushroom tea does kill cancer stem cells. I take a cup of the tea daily. For the last four years my PSA has hovered around 0.08.

@joeck
Have you considered getting gabapentin for the pain in the joints? I take 600 mg three times a day and it really does make a difference in the joint pain. I’ve tapered off of it a couple of times over the last four years and each time the pain in my joints increases So I go back to 600. I do have osteoarthritis so that doesn’t help, Had both knees and one hip replaced, and the other ones real flaky. Gabapentin seems to keep that from getting worse, though Acetaminophen helps as well.