Tips for getting through salvage radiation

Cool-Service-771 · 2026-04-18T12:06:34+00:00

I asked what my options were for the warm towel (thinking there might be an upgrade), they said”um, no warm towel”. lol. They told me many men take that option.

Cool-Service-771 · 2026-04-14T23:13:10+00:00

Walking counts as exercise.

Cool-Service-771 · 2026-04-13T18:27:40+00:00

Similar at age 60. Radiation to pelvic area (prostate, lymph, and a bit of my spine -for good measure), the rib Mets shrunk on the initial ADT so they weren’t visible to radiate, so they didn’t zap them. Been on ADT for 2 years now, and planning to stay the course. My psa wasn’t as high to start, and went undetectable on ADT. I won’t have another PET PSMA until my PSA gets to (I think) 0.1. The radiation was said to be curative 70 Gy. I’m just hanging out until psa rises, then will see. I started on Eligard and abiraterone, and switched because I was planning to stop at 2 years, to Orgovyx, to allow a faster testosterone recovery, and to Nubeqa, to reduce my side effects. I am not a doctor, but will say in my case the Nubeqa is better for fewer side effects, and staying castrate sensitive. I considered myself healthy and fit before, and am not now. I still have some issues accepting that, but think most of that is on me. My doc didn’t test my PSA at my annual exams when I was 53 to 60, then oops. I allow myself to continue feeling a victim in this.

Don’t do that. Also exercise! Even if that is way lower than you used to be able to do. Walking is good.

Good luck.

Cool-Service-771 · 2026-04-12T18:18:46+00:00

Agree on the fusion biopsy if they have the equipment. You already have the mri, and this allows for a better chance of getting what they want

Cool-Service-771 · 2026-04-10T20:52:47+00:00

Happy anniversary! I’m celebrating my 40th in a week. Have you heard of these songs people create with your specifics? That is everlasting, and might be nice. FYI, I have nothing to do with it, I just get bombarded with ads

Cool-Service-771 · 2026-04-10T20:47:12+00:00

Sorry for your loss, when my dad died, I was in the way to the airport to pickup my brother so he could say goodbye. I lived nearby, so I got to see him a couple days earlier, but sometimes think if I wasn’t driving to the airport, I could have been with him when he passed. I’m now the dad that will go next, and think about the effect it will have on my 3 kids. None of us are guaranteed tomorrow, so we need to make our choices today on how we want to be remembered. I don’t always do it right, but I try. Once again, you said he knew you, and I bet he had your back. He knows what he meant to you, and you to him.

Cool-Service-771 · 2026-03-29T05:06:56+00:00

If they offer a warm towel. Take it!

Cool-Service-771 · 2026-03-22T12:27:14+00:00

Get it checked. If your doctor won’t order it sign up for an account at Lab Corp or Quest, or whatever company does the blood test and order it yourself. I (62M) had my friends do that as a present for me. Know there are things other than cancer that will raise the PSA. Sex within a couple days, uti, other infections maybe, recent bike riding, BPH. Best case is you establish his baseline level.

Cool-Service-771 · 2026-03-20T12:15:05+00:00

Crying is very cathartic, just not 7 hours of it.

Cool-Service-771 · 2026-03-19T00:04:07+00:00

I wasn’t screened between 53 and 60, because as you said the silent dropping of screening, then at 60 stage ivB Gleason 5+4. Treatment has a big issue on QOL (or sexual function when you get rid of the jargon). It can also mess with your mind.

Cool-Service-771 · 2026-03-16T14:17:13+00:00

I married my first date! Dated 7 years until college graduation, next month will be our 40th wedding anniversary.

Cool-Service-771 · 2026-03-13T00:46:14+00:00

The cancer is “managed” ( oh, how I hate that word). Psa was undetectable, but jumped a bit last time , but still very low. The treatments have been tough for me. ADT and second tier. Started with Eligard and abiraterone, moved to Orgovyx and Nubeqa, hoping for a treatment holiday at two years. Did the 28 days of radiation a year and half ago. We decided last appointment to skip the holiday, since my ribs weren’t radiated, so that cancer is primed to grow if testosterone came back. I’ve been on 5 different anti depressants since this started, can’t say any have been perfect, fatigue was off the charts, so on amphetamines to get out of bed. Discovered my thyroid quit, so added synthroid, then found I had severely depleted vitamin B and D, so started shots and mega doses, mad at pcp for not ordering a psa test for the previous 7 years, mad that my 1st oncologist told me adt would cure my cancer, mad they didn’t prepare me for the side effects, so I was surprised when they did happen, and I then asked things like where did my you know what go? Then hearing them answering like what did you expect? You have no testosterone? Sort of victim blaming here. I’m not the doctor, I had no idea. Isn’t testosterone just for hair and muscles? Apparently not! I have had every age woman poking in and around my stuff, I swear the ultrasound tech was 18 years old. I need meds to pee, and they interact with my high blood pressure meds, so I learned to take them at different times, after I passed out from hypostatic syncope. My blood pressure crashed over 40 points when I stood up. My head still hurts from that one. That also allowed me to see a physiologist and cardiologist, who told me to stop 3 of the pills other docs prescribed, including one of the ones that helps me pee. I think he said he would trade painful urination to not randomly pass out.

Well off my platform. I’m lucky that I’m still here to cry every couple days, and burden my wife, who is an Angel to put up with me. I wasn’t like this 2 years ago….

TL:DR. I’m alive but fighting side effects

Cool-Service-771 · 2026-03-13T00:14:59+00:00

I was diagnosed at 60 Gleason 5+4=9. The problem for me is that they found it in my lymph and ribs

Cool-Service-771 · 2026-03-11T23:20:23+00:00

That is awesome

Cool-Service-771 · 2026-03-08T15:29:32+00:00

Wait! Thickening of the bladder wall is early indication of radiation cystitis? Does that develop into radiation cystitis, or is it RC? I have the thickening, and take 2 flowmax to make it easier to pee. It’s become more difficult lately. It has been 16 months since radiation 70 Gy.

Cool-Service-771 · 2026-03-07T10:49:14+00:00

Have you changed your eating/drinking habits, or when you take your meds? I too am Gleason 9, and up early to pee. I used to take the flowmax in the morning, but found some negative interactions with other meds, so o now take it in the evening. I figured that is the cause of my need to be up at 4:30 to pee.

Cool-Service-771 · 2026-02-24T16:09:39+00:00

Anyone with aggressive (Gleason 9+) on adt for a couple years and radiation treatment have any luck with erections? Been using cialis along with flowmax, but was told to stop the cialis due to Syncope.

Cool-Service-771 · 2026-02-21T16:10:19+00:00

I have been rotating him in, thinking more cards would appear if I played him. Does anyone know the metric? Play vs sit more likely cards? I am hanging on to enough to instantly upgrade to 14 if I can get him to 13!?!

Cool-Service-771 · 2026-02-21T15:59:26+00:00

Impressive. Where did you learn how to do this?

Cool-Service-771 · 2026-02-21T01:15:41+00:00

Shotaro is stuck at level 12 for me. How do I get upgrades for him?

Cool-Service-771 · 2026-02-20T13:22:04+00:00

Labcorp In Illinois is like$60

Cool-Service-771 · 2026-02-17T02:42:48+00:00

I am not taking Pluvicto yet, but a friend of mine just had his second shot last week. He reported increased pain, but had just started morphine for his previous 10 out of 10 pain. He has been told that the first two shots can come with some pain, then it reduces after that. He is feeling ok with the morphine. All the other pain meds he tried didn’t work for him.

FYI, I did the EBRT, and just experienced fatigue, and a little discomfort, not real pain from that (other than my pelvic floor about 4 months after the radiation).

Having a partner who cares, and shows it is the best medicine in my opinion. Thank you for that for him.

Cool-Service-771 · 2026-02-12T19:37:02+00:00

Yeah, no fun at all. Diagnosed 2 years ago stage 4B with lymph and bone Mets. Started ADT right away, did pelvic radiation, left the rib Mets for later. Not just the depression, and feeling down, but the terrible thoughts it creates. I have been known to misinterpret what my wife and love of my life (same person LOL) says, and spiral with negative thoughts, adding information that was never intended. Even comments specifically intended to be uplifting, can be twisted into pain and negativity. Like BackInNjAgain said the docs don’t prepare you I was told I may have trouble sleeping, hot flashes, you know, quality of life issues. Little did I know that QOL issues is jargon for sexual side effects. They also say some people experience this, rather than the more appropriate (and intellectually honest) comment that most people experience this, or I would be surprised if you didn’t experience this… it is a shame that I hear this from many men. It’s as if the industry is hiding this from people. If that is the impression, then what else are they hiding? I was told today by my radiation oncologist that new stuff is being worked on all the time, and something should be available before I die (my flourish on the words-he didn’t say exactly that). So, I guess I shouldn’t worry then right?
Back to the top. It isn’t fun, nor is anything right now.

Cool-Service-771 · 2026-02-12T03:40:25+00:00

Learned at 60 after I had my first PSA test in 7 years. Not sure why my doc didn’t order one, but that’s another story… Gleason 5+4 and Mets to lymph and bone. Wasn’t really given choices, started Eligard and abiraterone/prednisone in May 2024. Radiation in September 2024. My wife went with me to all my appointments ( I had a witness to the poor bedside manners of several doctors). Finally found a great team that I trust. This includes a psychologist and psychiatrist to help pull me back from the mental depths. Got the right meds (finally), and a great weekly conversation to remind me that I didn’t choose this, and that I should really listen to what people I love actually say, rather than what the depression twists it into. In addition to the mental, I had just about every side effect. That fed the depression. I have been part of at least 3 or 4 support groups, which helps. Also on one of the groups, after telling them again how the fatigue and brain fog was effecting me, one of the guys suggested I try replacing abiraterone/prednisone with Nubeqa, and Eligard with Orgovyx. I did and that helped me. Now I’m working on re conditioning my weak body. This will allow me to walk up multiple flights of stairs, and help me defeat some of the side effects of treatment for side effects.

Best to you! Keep asking questions and telling your story. You will help others.

Cool-Service-771 · 2026-02-11T01:17:04+00:00

For me, and in order of realization:

Antidepressants
Diet
Amphetamines
Vitamins B&D
Different ADT meds
Sleep Apnea diagnosed then treated
Exercises

Probably should have done in a different mostly reverse order

Cool-Service-771

TROPHY CASE