Experiences with Salvage Radiation, tips and advice

[JLR65]

My husband will be undergoing 39 sessions of salvage radiation in a few weeks and I am looking for any tips or advice on what to expect as far as side effects and how to make it more tolerable for him. He had RALP in November and unfortunately PSA did not drop. PMSA scan found 2 small lymph nodes in the pelvic area. He is currently on Orgovyxx. Thanks very much!

[Tall_Allen]

He should have 3 years of Orgovyx and 2 years of abiraterone along with the salvage radiation because of the lymph nodes.

ncbi.nlm.nih.gov/pmc/articl...

With that many sessions of radiation, fatigue is a possible side effects. Vigorous exercise, starting the day of the first treatment may prevent fatigue and help the radiation work better:

prostatecancer.news/2017/11...

Here are some expected acute side effects of the radiation:

prostatecancer.news/2018/10...

[Alturia]

I finished 32 sessions of radiation to the prostate bed and lymph nodes in early January after a RALP. Despite exercising regularly - walking an hour a day and weight lifting - the fatigue wiped me out. Some nights I would go to bed at 6pm. I think you learn to accept what your body is telling you and if necessary take naps or go to bed early. Another side effect was frequent urination, like 20 to 25 times a day and 6 times at night. I am now on a drug called Myrbetriq which is helping. I wish I had asked for help sooner but initially I didn't want to take another drug. I also had frequent loose stools. Wipes with lanolin helped a lot. I found regular toilet paper is too abrasive.

[mja511]

I had 34 sessions of salvage radiation last July with no issues. I work full time, and didn't have to miss any work. Hardest part for me was drinking just enough water to fill my bladder, but not to much where I couldn't hold it. As for fatigue - just have to power through that.

[TJS-1]

Same experience as mja511 - mostly a non-event except for time commitment and mental fatigue of daily procedures (39 sessions). I imagine everyone will have unique experience, as with all treatments, but the fact that your husband is young, physically active and otherwise in good health should benefit him greatly. Especially if he can keep up the swimming during treatment.

[EaNa]

Hi. I started 34 sessions yesterday, so far so good but it's early. I regularly take naps, hoping that will help. The only thing I can contribute is my plan for the full bladder for each session which worked perfectly my first visit and yesterday. Empty the bladder about 1 1/2 hr before scheduled session and drink 24 oz of water within 15 mins. Try to void the colon prior so he can hold the bladder until his session. Everyone's bladder is different, mine is a bit lazy otherwise 1 hr before might be enough. Experiment with the timing starting a few days before. Hope that helps. My story is similar, RALP 2 yrs ago, PSA undetectable 1st yr, started rising afterwards. I wish you both success.

[Cooolone]

Let's see... I have to reach back in my memory bank for this one.

RP 4/2018 with persistent PSA

6 month ADT late 2018

40x IMRT Jan 2019 with 72gy total (1.8per)

IMRT to Prostate Bed and Surrounding Lymph Nodes

On the Water Protocol, which is when they have you drink water before treatment so to fill your bladder and pull it away from treatment area. This was the hardest part of the game! I needed to arrive approx 1/2 hour before my appt. and for me, drink 24oz+ of water. Then wait... Lol (the hard part)

Then you get called and change, get on the table, they take pics and hopefully everything looks good and then proceeds. Treatment is like 10mins, the wait, set up, pics and approval take the longest.

Also must be aware to avoid gassy foods... This can interfere with the imaging and isn't good, can be taken off the table and reset, same goes for the water, if not enough, etc. Don't eat pizza before going in, hahaha, ask me why. Lol

So, routine once you get it down, is best, same appt times each day, same routine, same diet helps but is hard. I was working at the time and walked quite a bit to treatment and from, and work. The beginning goes quick because you want to get started. Then after week 4 things begin to get slow and you want to just get it over with, so it drag out into you get to the last week or two. But when hitting that home stretch it's easy to get off the routine, and that's when issues happen. We get complacent, etc... Think we got it locked down and slip up.

I hated when there was issues with someone in front of me that caused delay because then o had to figure out how to hold the water without releasing it. Until I was that problem child... Lol. Only happened 2x but was at the end for me, which was even more disturbing because I though I had it all right. Hahaha.

Then when done, you get to ring that BELL and what a feeling it is

As I can remember, routine worked best! Keep it simple! Fatigue definitely creeps in, so try not to let it. Otherwise isn't really anything but time.

Best Regards

[Clouds_69]

I had 33 sessions last year and, as others have said, the key to a good treatment is always getting your bladder right: not too full and not too empty. Before starting your treatments, find what works for you over a 2-3 hr period. Try starting with a bowel movement, and keep track of when and how much you drink, and when and how much you pee, and use that to develop a routine that works for you. You won't always get it right - I had sessions when I was either too full or too empty - but most of those were in the early stages.

One other thing: get to know your attendants by name and, if you can't remember, write their names down. They are responsible for getting you accurately lined up so the radiation goes where it's supposed to go, and for monitoring you throughout the treatment. More so than for any other treatments I've had, they are the human face of what is a lengthy journey that you are all on together.

[j-o-h-n]

Here I go again:

Greetings: Radiation - I've posted this before so to those people who have already seen this please forgive me.

IN 2005 - Long ago

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/08/2023 7:58 PM EST

[Hostage46]

On Monday I’ll be halfway through 37 scheduled sessions. I’m told I’ll have some “bladder urgency” and “soft stool” issues, nothing so far. I did start on Myrebtriq this week in anticipation of bladder issues … we shall see .

General fatigue started after week one. I do light exercise daily varying between 30 min of moderate cardio on the peloton and 1 hr walks which really helps. Without the exercise the day is shot.

I’m getting good at filling the bladder. If it’s not full, he’ll have make it full to complete the session. I’ve figured I need to start drinking 2hrs before the scheduled treatment time to ensure the bladder is full. I’m generally in and out within 30 min. My biggest complaint is the daily drive down. I’m on the machine all of 5 to 7 min. All in all it consumes about 2 hrs of my day…. No biggie really.

[Polaris1]

I was diagnosed with Gleason 8 and had prostatectomy October 2018. A year later, my PSA had reached 0.5 and an Auxumin scan highlighted one pelvic lymph node. I had 38 radiation treatments at University of Chicago. I had virtually no side effects from the radiation treatments. The doctors warned that I would experience fatigue but I continued to exercise vigorously and experienced no fatigue. Good luck with your treatment. (My PSA is still undetectable. See my profile if you want more info.)

[JPnSD]

I experienced Radiation Proctitis 24 months post treatment. Unusual. Had a colonoscopy and Argon Lazer treatment. Bleeding episodes appear to have stopped. Otherwise....I had no side effects during or 2 years after radiation.