Seeking your thoughts on PSA of .1 on Orgovyx and Nubeqa

@ucla2025
That was an hereditary genetic test, followed by a somatic genetic test. If either one shows a genetic anomaly, then maybe something different can be done in treatment. Good to hear you had both done. I didn’t have my hereditary test done until 11 years after I got prostate cancer. My treatment may have been different if they knew I had BRCA2.

The somatic test which is done on tissue or blood can be repeated if others tumors appear. Changes can occur in genetic issues with tissues. The hereditary test never changes.

I’ve heard many times that they cannot do SBRT radiation on certain metastasis that are in areas that could damage other tissue that is important. You might look into having proton radiation done on those spots, It is much more targeted. It might be able to zap them.

Dr. Carl Rossi at UCSD has been doing Proton radiation treatments since 1994 when they built a building for the machine in San Diego. The first patient was the person that invented it, He lived to over 100. Rossi has done Proton radiation on over 13,000 prostate cancer patients. You probably can find somebody closer, and San Diego is a long drive, But I figured I’d tell you about it.

@jeffmarc Thank you Jeff your information and experience are very helpful. That sounds like a good place for another opinion.

@jeffmarc Thank you Jeff your information and experience are very helpful. That sounds like a good place for another opinion.

Hi @ucla2025 ,

I can second the recommendation of @jeffmarc of Dr. Carl Rossi at California Protons in San Diego for a second opinion of your husband's situation. Dr. Rossi treated my Gleason 8 (pre-treatment PSA = 7.9) localized prostate cancer with proton beam radiation (Dec 2024 - Feb 2025), and Orgovyx which I started in Oct 2024 and will continue until April 2026. My first PSA test result 4 months after radiation was "< 0.04", and my second PSA test result six months after that was also "< 0.04". I cannot tell you how happy I am about the treatment I received from Dr. Rossi and the team at California Protons. Besides being a great doctor, Dr. Rossi is a wonderful human being and you would enjoy consulting with him. He emphasizes patient quality of life in his treatments. There are quite a few videos on youtube where he discusses proton beam therapy so you can get a bit of background on proton beam there. The more you know before your consultation the better the questions you can ask of him.

You may have to wait a bit for an appointment with him as he does not do that many. You can probably do an initial consult with him via telehealth, as I did (I live in Minnesota.)

Also, if your husband needs to stay in San Diego during treatment and is a veteran, he and you may be able to stay at Fisher House at Naval Medical Center San Diego (at no cost) and then commute to California Protons as needed. This is what I did, and I cannot say enough positive things about Fisher House and their staff.

I just wanted to make a couple of small corrections about what Jeff said about Dr. Rossi's experience. Dr. Rossi did his medical residency at Loma Linda University and then practiced there for many years. Loma Linda was the first commercial proton beam facility in the US. In 2013, Dr. Rossi moved to the California Protons clinic in San Diego (formerly Scripps) as medical director. To date, Dr. Rossi has treated over 13,000 patients, and over 9,000 of those were treated with proton beam therapy.

Best of fortunes to your husband and you! Feel free to reach out to me if I may provide more information.

Hi @ucla2025 ,

I can second the recommendation of @jeffmarc of Dr. Carl Rossi at California Protons in San Diego for a second opinion of your husband's situation. Dr. Rossi treated my Gleason 8 (pre-treatment PSA = 7.9) localized prostate cancer with proton beam radiation (Dec 2024 - Feb 2025), and Orgovyx which I started in Oct 2024 and will continue until April 2026. My first PSA test result 4 months after radiation was "< 0.04", and my second PSA test result six months after that was also "< 0.04". I cannot tell you how happy I am about the treatment I received from Dr. Rossi and the team at California Protons. Besides being a great doctor, Dr. Rossi is a wonderful human being and you would enjoy consulting with him. He emphasizes patient quality of life in his treatments. There are quite a few videos on youtube where he discusses proton beam therapy so you can get a bit of background on proton beam there. The more you know before your consultation the better the questions you can ask of him.

You may have to wait a bit for an appointment with him as he does not do that many. You can probably do an initial consult with him via telehealth, as I did (I live in Minnesota.)

Also, if your husband needs to stay in San Diego during treatment and is a veteran, he and you may be able to stay at Fisher House at Naval Medical Center San Diego (at no cost) and then commute to California Protons as needed. This is what I did, and I cannot say enough positive things about Fisher House and their staff.

I just wanted to make a couple of small corrections about what Jeff said about Dr. Rossi's experience. Dr. Rossi did his medical residency at Loma Linda University and then practiced there for many years. Loma Linda was the first commercial proton beam facility in the US. In 2013, Dr. Rossi moved to the California Protons clinic in San Diego (formerly Scripps) as medical director. To date, Dr. Rossi has treated over 13,000 patients, and over 9,000 of those were treated with proton beam therapy.

Best of fortunes to your husband and you! Feel free to reach out to me if I may provide more information.

@carter777 Thank you very much for sharing this valuable information. Based on what you and Jeff have said, it seems like our situation lines up well for proton therapy. I am going to look into it. I understand it is used in more delicate situations like ours. Our MO says we should use systemic therapy because of the risks involved with radiation, but maybe he didn’t consider proton beam? I will watch Dr. Rossis YouTube videos. I can think of worse places to travel to than San Diego! So you will stop the Orgovyx in April and then recheck the PSA? Thanks again and I’m glad to hear of your great outcome.

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.