Joint pain from Erleada and Orgovyx

[Jamesjohn63]

I asked Dr Goodman about pain I get in my arm and back (upper back, shoulder blades mostly) and he said about 20% get this from the meds. Where does he get the 20% figure? Does anyone else get this pain? Also it was my research that yielded the idea of LU-617, not him. I am in Utah but willing to drive to get the answers and care I need. Does anyone out there have thoughts? Thank you all and God Bless. PS. I am 64 and have had stage four going on now for about 3 years maybe longer. Had radiation and brace in 2017 but evidently it escaped to my pelvis and L-2

[Tall_Allen]

Neeraj Agarwal is the famous MO at Huntsman.

[JamesAtlanta]

I’m interested in hearing responses to your question, too. I’m on both (working well - undetectable since Last October). I have some really odd pain in my upper back that comes and goes. So painful it’s almost hard to breathe. Thankfully it only lasts a few minutes at a time. And occasionally I get a weird burning sensation in one or both arms. Never had either before.

Best wishes with your journey!

James

[MateoBeach]

Sounds like, if you were put on Orgovyx plus Erleada then they are assuming you have no reasonable local, regional or metastasis directed therapy option and are treating it as incurable. Maybe reasonable these days but not final. Yes Orgovyx can cause joint and back pain even though it is considered not common. The only way to know would be switch to something else such as Firmagon and see what happens.

In the meantime you should request a PSMA PET scan and consult a good radiation oncologist about regional plus L2 targeted IMRT as possibly a better avenue to pursue now.

[Jamesjohn63 in reply to MateoBeach]

I appreciate the thoughts you share. I use topical ointments to manage the joint pain. I also rise at sunrise and walk for an hour out here in the country north of Saint George. Now that my PSA is rising Dr Goodman endorsed the new therapy LU 617. The problem I feel, is that it was my idea. Dr Goddman is a very nice man and has great bed side manner. But he is too busy for me. I think I am going to be handed of to Huntsman in SLC. They are supposed to have this product but they told me there is a nationwide shortage of it per Nina at the hospital up there. I had bone scans etc in March and it shows no change in the three visible mets. Pelvis both sides and L2 in my lower back. Very grateful for this site

[MateoBeach in reply to Jamesjohn63]

That is good. However you also must have a PSMA PET scan such as Pylarify in order to determine if you are a suitable candidate for Lu treatments with Pluvicto.