HealingWell
Search Close Search
☰

Experiences with salvage radiation

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/6/2023 11:07 PM (GMT 0)
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!
Posted 3/6/2023 11:31 PM (GMT 0)
JLR, that sounds a lot like my path. Robotic surgery in May 2009 and the next Jan. I was undergoing SRT. I was still working at that time, so the problem for me was just trying to schedule the appointments. There was some fatigue towards the finish line, but otherwise it went well. Keep us posted and wishing him a great outcome.
Michael
Posted 3/7/2023 1:56 AM (GMT 0)
JLR, as Michael stated above fatigue near the end was the only real issue i had, and it was not bad, very manageable actually. He will likely, as time goes by, also have more frequent urination, but that will resolve soon after he finishes treatement.

Is he also having Hormone Therapy/ADT?

Whether he is or not, but especially if he is, he should try his best to stay active, work out, go for walks, and not be a couch potato. It will help him in the long run.
Posted 3/7/2023 3:37 AM (GMT 0)
JLR - I had no side effects that one could plan for or do much about. The biggest headache is getting the full bladder, empty colon routine down so the appointments go fast. A steady diet and routine helps with this. I was in and out in less than 30 minutes, most of the time about 20 minutes and lived 15 minutes from the center. I had 9am appointments and would head to Home Depot or whatever afterwards (retired). It was just a long start to the normal day.

I was fully continent when I began and there was some urgency at times to get to the bathroom as time went on. This can be a bigger issue if incontinence is still an issue when going through the treatments from what I hear. ED progress will be delayed or stopped from the treatments also.

The tiredness is there near the end and shortly thereafter. Nothing a quick nap would not take care of but it hit me hard one day when working out and I just went home and napped.

This is not to say that other things can happen but there is no way to plan for them and they tend to be exceptions to what most experience nowadays.
Posted 3/7/2023 4:59 AM (GMT 0)
JLR, I didn’t have the surgery, but did have 28 radiation treatments. He will be instructed on how much water to drink to keep the bladder full before each visit. The sessions become routine and the techs will help him through the experience. I had some urgency after the treatments ended. A prescription for urgency helped out and that ended in two weeks.
I have been on Orgovyx for almost a year and half. He may already be experiencing the side effects from that. His PSA should go down. There will be a tendency to gain weight, certainly in the belly region. There will be a loss of libido as his testosterone goes way down. Hot flashes can be stopped with a hand held fan and keeping cool. A good diet and exercise does help with the weight gain. Nothing I can find helps with the libido loss. I experienced some tiredness in the afternoon. Sometimes it is like hitting a wall. A short nap restores the energy. I believe that with salvage radiation that the ADT is for only 4 to 6 months. I do know that regaining testosterone levels comes back quicker when Orgovyx is stopped than other forms of ADT. With all that said and all of the above mentioned, life goes on. All work can continue. Vacation trips are still fun and staying alive is the main goal.
My best wishes to you and your husband.
Jack
Posted 3/7/2023 6:26 PM (GMT 0)
I had salvage radiation after years of slowly rising PSA after RP. I had 40 treatments ( 8 weeks every day). It just became part of the routine for awhile. The 2 side effects I had were fatigue and severe constipation. I am retired, so I just took a nap when I got home. The constipation was treated with some doctor-recommended over the counter medicine. Both these effects went away gradually over about 3 weeks after completion of treatment. Continence and erectile function were lousy before radiation, and lousy after. So no change there. I did not have ADT, radio-oncologist recommended against it.
The treatment was effective, undetectable PSA since treatment.
Posted 3/7/2023 8:31 PM (GMT 0)
Thank you all so much! He is relieved to know it will be manageable.
Posted 3/7/2023 8:47 PM (GMT 0)
The strangest part of radiation therapy for me was that I would lie on the table and it seemed that nothing was happening, since radiation is invisible. I asked the techs if they were sure it was actually working, and they assured me it was. I had no immediate side effects. I got a little tired in the middle, but the tiredness went away before it was all over. Over time I did have a side effect. After surgery, over a period of about ten months, I had become completely continent. After radiation, I began leaking again and had to go back to wearing pads some of the time. I realized that alcohol consumption led to leaking so I cut way back on alcohol -- not a bad thing in itself. Slowly I have regained much of my continence, but I still leak sometimes. I don't think that this is a rare side effect, but many do not experience it.
Posted 3/7/2023 9:13 PM (GMT 0)
JLR65, I had 8 weeks of radiation following my RALP. I also went on ADT prior to starting, although mine was Lupron rather than Orgovyxx. I had some minor urinary issues after a couple of weeks. My RO prescribed Flomax, which took care of it. He will be asked to drink a lot of water prior to treatments and he will have to hold his urine for about 30 minutes total. That was about the hardest thing for me. but I got better at it as time went on. Overall, the entire experience was not nearly as hard as I thought it would be. The actual time for each treatment was about 10 minutes and I could not really tell that anything was happening. I was blessed with a wonderful team. It helps when you like the people involved with your treatment. I continue to have occasional urinary issues, but nothing to hard to deal with. I don't know if it is from radiation or the prostatectomy or what. All in all, I have no regrets about any of my treatment. You do what you have to do. I hope that all goes well for your husband and for you. BTW, exercise helps with fatigue. God bless.
Posted 3/7/2023 10:17 PM (GMT 0)
I had salvage radiation (39 treatments for a total of 70.2 grays) a little over 7 years ago. I worried about GI and urinary side effects, but the R.O. told me not to worry, and that if any side effects would occur then he would take care of them.

Well, I had ZERO GI and urinary side effects during and after the radiotherapy. I never had to change my diet or lifestyle. I continued to drink 10 to 12 cups of coffee a day and a nice glass of red wine in the evening. My daily routine was to get up at 4:30 am, have a quick bite and coffee then drive the 30 miles to my office. I would leave my office around 3 pm to drive home. The only difference is that I would stop off at the hospital's radiotherapy center for my quick daily treatment. I was usually in and out within 15 minutes.

During my exit exam with the RO, I honestly asked him if the machine was really on since I never had any sensation or side effects during this time. Honestly, for me, it was a "nonevent" and didn't interfere with my life one bit.
Posted 3/8/2023 1:15 AM (GMT 0)
Hi JLR65,

I had 39 salvage radiation treatments in the Fall of 2021 accompanied by a 6-month course of Lupron. My side effects were the following: 1) some relapse w/r/t incontinence but not too bad, 2) fatigue that would hit me in the evening, which resulted in going to bed earlier, and 3) hot flashes. All of these were manageable.

As far as the treatments themselves, very smooth. I got into a routine of drinking the water when I arrived at the office, which was about 30 minutes ahead of my appointment. Most of the time, I was receiving treatment +/- 5 minutes from the time on my appointment time and as other have mentioned, you're in and out of there in no time.

Good luck to both of you.

Rick
Posted 3/8/2023 1:10 PM (GMT 0)
I hesitated to respond, but figured I should add my bit as my experience was different from the above.

In 2013 I got 40 radiotherapy sessions (a total of 72 Grey) to the prostate bed and surround 3 months after RARP. I got radiation proctitis, explosive diarrhea + intestinal cramps, an increase in urinary incontinence and a major increase of bleeding from my hemorrhoids. Fatigue was pretty serious for quite some time (my wife and son could not wake me up when I fell asleep for several months after the last treatment). The other side effects steadily increased for 3 years and 8 months after the end of treatment, then they began to subside.

The intensity of the radiation, the precision of the treatment and the tightness of the beam focus have all improved quite a lot since then (10 years now), and the side effects from my most recent radiation treatments (2 years ago) are much less. Contrary to others' experience I had to empty both my colon and my bladder before any and all radiation treatments. Do as your therapist says and it will go well. smile
Posted 3/8/2023 8:37 PM (GMT 0)
Late fall of 2018, received RT of 40 sessions to the prostate bed and 2 small hot lymph nodes in the pre sacral area. Had RP April 24/2013. Sessions were short, 20 minutes including getting on the gown, Drive of 2 hours round trip was the biggest pain.

Like trail guy, developed radiation proctitis, which eventually calmed down after 3 years. lucky I spend a lot of recreational time outdoors winter and summer where there is 99% wilderness or bush areas so when i get the call, and it tells me right now, it is easy to just duck in behind some trees or bushes. Sumer, spring, fall it is moss, winter snow. Ahhh, natures TP. But being active every day, constipation was never an issue unless travelling long distances by vehicle or plane.

Other than desperate urgencies to void, being tired was not an issue or incontinence or ED. Have been undetectable since after the last of the treatments(2018).

Dave
✚ New Topic ✚ Reply