I had an appointment with the NP at my oncologist's office a couple weeks ago. We discussed the fact that my PSA has been creeping upwards this year and I wondered whether it's just the inevitable failure of Nubeqa, or if my switch from Lupron to Orgovyx last November might be a factor. I started Nubeqa in Feb 2020 and aside from the side effects, I have been pretty happy with how well it has worked. After starting it my PSA dropped to 0.04 at one point and yes it crawled up, but this year the momentum has increased. My PSA test last month was 0.58, in May it was 0.45, in Feb it was 0.29, and the one prior to that, the day before I started Orgovyx, it was 0.28. I know we need to watch the acceleration rate, not just the numbers, but does the hivemind here think it's time to jump to Pluvicto when I'm at 0.58?
I've never had huge numbers. My PSA at diagnosis in 2010 was 4.7 and the highest it has ever reached, in 2018 right before I started docetaxel, it was about 16.7.
As for the Orgovyx, I was the first patient my oncologist has ever prescribed that medication and according the the NP, I'm still the only one in his practice. It was done at my request at the time. Lately though, I've already been thinking perhaps I should switch back. I don't mind taking the pills, but the injections every six months aren't such a hassle either. One thing I wanted to get away from with Orgovyx is the hormone swings at the start and finish of each cycle with the injections, but I've seen enough even with Orgovyx, mainly emotional swings, that I think that factor is pretty much a wash. I'm also nervous about the number of drug interactions with Orgovyx. The oncologist wants me to switch back to Lupron and I'm OK with that.
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I have asked and never really gotten a clear answer. I don't really think he knows. When his NP messaged me through the patient portal after the appointment to tell me the oncologist wants me to be evaluated for Pluvicto, and to switch back to Lupron she passed along a message that said, "He would prefer if you were on the Lupron injections vs the oral medication - not that there is any data to support inferiority of the medication but just purely how the medication works in your system regarding the sustained levels over a period of time. " I'm not quite sure how to interpret that.
I had one earlier this year and frankly, it really didn't show all that much. IIRC there were 4 or 5 areas around pelvic lymph nodes that barely lit up and were suspected as cancer, but it was less than I've seen on scans several years ago. The second round of radiation I had a few years ago to target a few hotspots (my first radiation treatments were in 2010) knocked most of them down.
I understand that, my main suspect is that Nubeqa is becoming less effective. The list of negative interactions is my main concern with Orgovyx. I have wondered if, at some level, it makes a difference whether I'm using a drug that's an agonist vs an antagonist, but that's way above my pay grade. One thing on my mind is that ten years ago I used FECO at a gram per day and it did a great job of lowering my PSA. I'd like to do that again and Orgovyx has an interaction with CBD.
"Cannabidiol may significantly increase the blood levels of relugolix. This may increase the risk and/or severity of side effects… If you do have to take both medications, you should take relugolix first, then take cannabidiol after at least 6 hours to minimize the effects of the interaction."
Yes, and at some point in the not-too-distant future I intend use FECO (full extract cannabis oil) just as I did 10 years ago. The protocol is a gram per day for 60 days. When I did it in 2014 it did a great job of lowering my PSA, even when I was overdue for a Lupron injection at the time. As soon as I can get everything in place I plan to do it again, probably next year. That would be a conflict with Orgovyx.
I had low PSA, never above 3.4, prior to my diagnosis in 2019…after initial treatment of Lupron and radiation it dropped to undetectable. Two years later, in June 2021, PSA went to .06, then three months later to .12, then three months later to .41. I asked for a PSMA-PET scan but the cancer center said to wait until the PSA went higher, to 2.0. In the meantime, I had an MRI due to some hip and leg pain and it revealed a tumor in my L3 vertebrae. Soon after I had a PSMA-PET scan and it revealed widespread metastasis. My PSA at the time had risen to .93. My advice is to get another PSMA Pet scan as soon as possible. Since then I’ve been through chemo (very little response) and Pluvicto (complete remission, as of 12/23). I remain on Lupron and Nubeqa and my PSA is undetectable. I’m on my way to Mayo now for my quarterly scan. Fingers crossed. Good luck to you.
Regarding the timing for a PSMA scan, you mentioned that your “cancer center said to wait until the PSA went higher to 2.0” - did you mean .20? My MO wants to do the scan at .20 and suggested that waiting until PSA is something like 2.0 might give better scan results but may also be somewhat risky as cancer may spread by then depending on doubling times, etc. - I’m currently at .03 PSA after RALP and was 4 years undetectable until now. Just wanting clarification. Best regards.
I appreciate your advice. I had my most recent PSMA scan in May 2024 (ordered by my medical oncologist) and in a couple of weeks I see my radiation oncologist for my annual visit. My MO has referred me to the nuclear medicine dept for evaluation, I don't know exactly what criteria they will use.
I noticed you’re apparently a “Skifanatic”. I missed that earlier but I’m also a ski fanatic and have been all of my life. I worked my way through college as a ski instructor and again when I retired after a 30 year career with a major insurance company. I hope we both can spend many more days on the ski slopes of many resorts. Regards!
Update, there has been a change of plans. I had my annual checkup with my RO and he is going to zap the few lymph nodes that are lighting up. My last PSMA scan was about four months ago and the lymph nodes he went after 2 years ago are still dark, but there are a few new ones that only light up a bit, much less than what I saw previously. For me, I believe a few more turns in the radiation chamber will be a better option than Pluvicto.
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