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Orgovyx and severe hip/leg pain
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.
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Aching legs from Orgovyx…. Oh yes!!! If I’m going to walk any distance I need a cane. (Just turned 80) but was in pretty good shape. We know the Orgovyx is doing its job by keeping my PSA and Testosterone level at “undetectable”. Was on Orgovyx for 6 months when I had to stop because of coronary issues. Orgovyx can exacerbate coronary artery disease. So after being off Orgovyx for just 9 weeks my PSA and Testosterone levels took a jump that was hard for me to believe. Testosterone returned to a normal level and PSA was climbing (forget the number). Back on Orgovyx and Oncologist thinks for maybe another year. Doing blood work every 3 months to monitor PSA & Testosterone, and the numbers are good so far. The leg pain is a problem and I’ll discuss at my next visit in a few weeks. Should it get any worse then that would be a major problem. Oh, I had 44 radiation treatments as well. Gleason score was a 7 (4+3) with seminal vesicle invasion. Cribriform, PI-RADS 5/5. Wishing everyone here much success with treatments. MERRY CHRISTMAS, HAPPY HOLIDAYS and a VERY HAPPY, HEALTHY NEW YEAR…. GOD BLESS. Ken
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4 Reactions@jeffmarc
Funny you should mention - I just started a very low dose gaba 5 days (100mg/d). Saw my PCP this afternoon and she is 90% sure my ankle pain is an injury I didn't know I sustained. Waiting on results from xray, so maybe I won't be blaming Orgovyx for this. The neuorpathy could be my body or the ADT - we will see. We doubled the gaba dose and will keep titrating upwards to see if I can lose the PeriNeuro as I call it. Pending the results of the xray, I may need to be looking into bone deficiency remedies (as you, Jeff, and others have discussed at times).
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1 Reaction@kenporter thanks for the response.
I did check with my friend, he says his last two PSA's were zero, at least that sounds good.
And yes, it's that time - Happy Holidays to all!
@joeck
I would be interested if the x-ray found something.
They do ankle replacements when they can’t fix what’s going on, there’s so many bones involved. I’ve got a neighbor who has a problem with his ankle and it just isn’t resolvable. He gets cortisone shots every few months.
@jeffmarc
X-ray revealed no fractures but normal bone density. I will be reviewing the "Bone Health" discussion and wish my Uro team talked about anything along those lines (or exercise).
So we won't blame Orgovyx for this one, but in general maybe ADT is contributing to my PeriNeuro. Sorry to take us off the initial topic, but I guess it's all tied together by PC!
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1 Reaction@joeck
I suppose the pain in your ankle will still continue however. Hopefully increasing your dosage of gabapentin will help. I also take acetaminophen of every six hours.