Hi @ucla2025 ,
Yes, the current plan is to stop the Orgovyx in April, then my next PSA test would be about June 5, 2026 (16 months from the end of radiation.) I plan to see Dr. Rossi for a follow-up before then; it's possible the plan could change. I am really looking forward to seeing him again. I will fly to San Diego for a bit of vacation and to see some friends of mine there and escape some of the Minnesota winter.
Please remember that I am just a layman so I don't know that Dr. Rossi would be able to treat your husband. But if you make an appointment, and I would I highly recommend that you ask for Dr. Rossi specifically, then they will gather your husband's records and scans and Dr. Rossi will review them and will consult with you, go over the records and scans with you and give you an honest and direct opinion about what he thinks would be best and why.
Do you have a count of the number of the actual number of currently known metastases? Oligometatastatic prostate cancer is usually considered considered 5 metastases or fewer, and this count could impact whether radiation is deemed appropriate. Also, if some metastatic nodes are very close to or abutting organs, such as the intestines, rectum, and bladder, that could make it very difficult to radiate those nodes without causing severe damage to those organs . For my treatment Dr. Rossi was able to safely radiate all of my pelvic nodes and one questionable aortocaval node, as well as my prostate of course. My PET scan showed no definitive evidence of metastases but he treated all of these nodes as a precaution.
Also, I just wanted to point out that the hormone therapy your husband is receiving now, Orgovyx and Nubeqa, are not hormones themselves. Orgovyx is a drug that acts on the pituitary gland to decrease your husband's production of the hormone testosterone. Nubeqa is a drug that inhibits the androgen receptors on prostate cancer cells from absorbing testosterone. (From your posts I got the impression you may have misunderstood this. Apologies if I am mistaken... 🙂 )
Be sure to check with your husband's insurance company to see if they will cover treatment proton beam therapy for prostate cancer from Dr. Rossi. If he has original Medicare there will not be an issue. If he has Medicare Advantage or insurance through an employer you may have some issues. I ran into problems in that respect but, thanks to the dedicated staff at California Protons, got everything approved eventually.
@carter777 Thanks again for your response. Yes I am aware the drugs are not actually hormones. My understanding of how the two drugs work was explained to us by our oncologist exactly the same way you just explained it!
There are four “index lesions” two in pelvic area and two in the abdominal area. Those are the ones with significant SUV uptake. There are others that they described as “numerous” but not as significant.
My husband will go on Medicare in April. Blue Cross has been fairly good to us since this started but if the ACA isn’t extended his premium will go from $700 to $1700. We got that notice from them last month. At least we will only have to pay that for four months until Medicare kicks in.
Thanks to you and others I will have a very interesting talk with the MO at our next appointment in January. We are with UCLA now and I’m sure they would assist us in getting an opinion from Dr. Rossi if we request one.
In the meanwhile we are packing up the drugs and heading to Florida for a few weeks for the holidays. Thanks again for sharing your story. It has been super helpful.