Proton treatment question.

Hi @tinytoes ,
I received 28 fractions of proton beam therapy at California Protons Cancer Therapy Center in January and February 2025. I am 69, and have Gleason 8 prostate cancer with a tumor in the left lobe from mid-gland to apex. My PSMA PET scan also showed one posterior aortocaval node with a tiny bit of radiotracer (F18) uptake; the uptake level (SUV) in this node was < 2, therefore not considered a malignancy, but this node was still treated, along with all of the pelvic lymph nodes. My radiation oncologist is Dr. Carl Rossi, who has treated many thousands of prostate cancer patients with proton beam radiation.

I started taking Orgovyx (ADT) about 10 weeks prior to the radiation therapy. I will continue on the Orgovyx for a total treatment period of 18 months.

The radiation treatment went very smoothly. My only noticeable radiation side effects were an increase in nighttime urination from my normal of 2x to 4x, some fatigue, and a hyperpigmentation spot on the skin of each hip. Since the end of radiation the urination frequency is improving. Excercise and rest took care of the fatigue. The skin hyperpigmentation has almost disappeared as of April 2025. Side effects vary with each individual. I consider my self very lucky.

I should also mention that prior to the radiation treatments I had a procedure to inject SpaceOAR hydrogel to create more space between the prostate and the anterior wall of the rectum. This procedure was done by Dr. Steven Davis and went very smoothly.

The Orgovyx caused the following side effects: ED, no libido, occasional mild hot flashes, some joint stiffness, some mind fog, fatigue. I started taking a daily dose of Cialis (5 mg) soon after the ED set in. My ED and libido have improved greatly in the last month. Exercise really helps with the joint stiffness and fatigue. I still notice the mind fog with temporary memory lapses at times.

In March 2024 my PSA was 7.9. In December 2024, just prior to my radiation, I had my PSA tested again and due to the Orgovyx, the PSA was only 0.42. My first post-radiation PSA test will be in June 2025.

Let me know if you have questions. 🙂

Hi. I just want to know if your Oncologist told you to take in the Orgovyx for 18 months, or it is your own decision. Same thing with taking Cialis when you feel you had ED, was it the doctors advise, or just your own decision? I have been taking Orgovyx for 6 months now and it’s true, has ED, no libido, feeling weak, has joint pain, etc., now and really I think of taking Viagra or Cialis (like what you are now doing) or Nugenix (Free Boost Testosterone). Just want to find out if doctors are ok with it.

Hi @boniyabes ,

My radiation oncologist recommended the 18 months of Orgovyx, in line with the NCCN treatment guidelines for high risk localized prostate cancer (12 - 36 months of ADT as of Dec. 1, 2024 guidelines revision). He did say I could stop the Orgovyx at any time if I could not tolerate it. So far, despite side effects, I am tolerating the Orgovyx quite well and plan to continue it for my remaining 12 months of the 18 months total advised.

My doctor offered the low dose (5 mg daily) of Cialis (aka Tadalafil) when I told him about the total ED and zero libido which began only a couple of weeks into the Orgovyx treatment. I wanted to try to keep the blood flowing to my penis to help prevent atrophy and shrinkage and using the Cialis made a noticeable difference. I didn't have any spontaneous erections until about 5 months into the Orgovyx, but now notice occasional nighttime erections and often wake in the morning with an erection, as was the case for me before I started the Orgovyx. My libido has improved as well. Using Cialis in conjunction with ADT is quite common for my particular situation according to my research, but it should definitely be discussed with your doctor first to see if it is appropriate for your individual situation.

Hope this info helps you!

Hi @carter777

I'm in a similar situation, Gleason 3+4, but Artera test indicated I would benefit from ADT so I've been on Orgovyx for the last 10 weeks. I start proton treatments this Wednesday. My RO has me on Orgovyx for a total of 6 months, and told me I could stop at ay time if side effects were too bad. So far, almost no side effects. Only noticeable one is no libido, but I don't have a partner so it doesn't matter that much right now. I guess ED too, but haven't even tried in a few weeks. Will be interesting to see how things proceed after the proton therapy and after getting off Orgovyx a couple months after that.

Thank you. Will talk to my Oncologist on this and hopefully he will agree. Get well soon. This, too, pass.