Doing Radiation? Here's what helped me. Routine, Rice, Bidet and Probiotics.

[JPnSD]

With only 7 more sessions of my 38 salvage radiation treatments to go (RP 8/2019, ADT 10/2020, Salvage Radiation 2/2021).... I thought I'd share a few of my hard-learned lessons. 1) get a routine down and stay hydrated. I have alarms set on my phone to remind me to void my bladder and then drink a full 16 oz of water 1 hour before... to ensure that I show up with "bladder full, rectum empty".... staying hydrated will help you with both issues. 2) Diarrhea started about a week and a half in - two important elements helped here. RICE, lots of RICE! I tried many things...Imodium, etc.....but this was my lifesaver. Gentle and effective. Anything on a bed of rice just seemed to go easier. 3) The next thing that saved me....installing a bidet. The constant irritation from the toilet tissue in that area was almost as bad as the diarrhea. It took me 10 minutes to install one of those under-seat bidets (attaches to water connection under the tank),,, and it was immediate relief! No wonder Europeans have always had these. Keep it simple...all you need is a basic water jet type (note: they also have them with LED lights, blowers, music, heated water...etc. etc. LOL) ...cost was about $40 for a basic but effective self-installed unit from Amazon. It really helped...and was actually refreshing. 4) And the last thing I did that seemed to help was using Probiotics daily (capsules, chewables, etc.) to keep the biome active in my gut. They kept me functioning...and regular.

I hope this helps someone. Each one of these new phases in the APC journey is ...excuse the pun...scary crap.

Now they tell me that the lethargy will peak a week AFTER I stop treatments. I have been doing regular exercising to help....anyone have any additional suggestions? B12 injections?

Thanks. Safe journeys to all.

[Tall_Allen]

Good tips! Exercise is the only remedy I know of for fatigue:

prostatecancer.news/2017/11...

[middlejoel]

3JPnSD,

Thanks for the detailed info, much appreciated. I will be doing SBRT in the coming couple of weeks. I know nothing about bidets, is it a given that everyone having radiation will be hit with diarrhea? Is its purpose to clean oneself before getting up from the toilet? How do you keep the flushing water inside the toilet? My treatment protocol is for 5 days, how long was it before you started to feel the diarrhea irritation.

No problem with rice, I love rice and make a pretty good Spanish rice plate.

jal

[JPnSD in reply to middlejoel]

The design of the bidet is such that it contains the water within the bowl when you are seated and it is being used (very directed stream to the target). It allows you to use water and your finger to gently clean the area instead of wiping with toilet tissue...avoiding repeated rubbing of the area and it becomes very tender and irritated because of the frequent use of the toilet. It leaves one much cleaner than using tissue...and also helps avoid possible infection of the irritated skin because of repeated use. One just uses tissue at the end to dab the area and dry yourself. Your finger is rinsed clean along with your bottom, but one washes their hands well with soap after use...and you are good to go (again :). The onset of the effect varies among people. For my salvage radiation, I had 38 treatments (Mon-Fri for 7.5 weeks). Diarrhea started for me following treatment #8. My RO said it could start as early as the 5th treatment...or as late as the 15th. Some may even avoid this effect. We are all different. Wishing you all the best.

Joel

[middlejoel in reply to JPnSD]

Joel, I can see how the use of bidets would be helpful long term.... 38 treatments. Hopefully with only 5 treatments, I won't run into that problem, Thanks for the info,,

[JPnSD in reply to middlejoel]

Ah...when you said 5 treatments...I thought you meant like what we go through for SRT...5 sessions per week But a total of many more sessions. Best of luck.

[fluffyfur in reply to middlejoel]

My husband had no diarrhea at all. Everyone is different. His bladder was scanned prior to EVERY radiation treatment to make sure it was full to the appropriate level. If it wasn't, he had to get off the table. By having your bladder full it pushes your bowel out of the way during radiation. I have read many accounts on these forums of guys who never have their bladder level measured before each treatment. I do think it makes a difference.

[middlejoel in reply to fluffyfur]

Well Fluffy, I am with you, as to the scanning the bladder for fluid levels. First I've heard of it. Will bring it up when I meet with my onco next week, thank you for your comments.Cute dog,

[JPnSD in reply to fluffyfur]

Scanning for a full bladder and empty rectum is standard operating procedure as far as I can tell for SRT....no idea the protocol for SBRT.

[fluffyfur in reply to JPnSD]

No idea but on the Facebook forums there are men who just drink the fluid in their car and then hop on the table. They mention they are not scanned. My BIL wasn't scanned either and he also had PC. Seems strange for sure.

[treedown in reply to fluffyfur]

I was given a low level CT scan prior to each treatment. I only had one issue in my last week and a quick trip to the bathroom cleared that up.

[Hidden in reply to treedown]

Your experience was my experience.I was fatigued but still managed to workout, bike ride and play ice hockey the entire time.

I did go part time at work..because I could and I had some weeks left on the short term disability claim.

Wife nagged about me not resting the whole time but I'm more of a balls to wall kind of person to begin with. .can't sit still

[treedown in reply to Hidden]

It never occurred to me to take it easy. I was asymptomatic from day 1 and still am though I did "go" more at night during RT. I did 3 hrs of nonstop research after hearing my PSA was 156 and knew that I would be on ADT, so decided to drop weight and I did. Riding my bike helped that and still does keeping my weight down. To this day I have never felt fatigue, in fact I was more likely to take a day nap before my dx. So I am lucky that way. I never stopped working my version of full time but I did lighten my load, luckily I am self employed and sit at a computer to do it. This week I rode 38 miles with a 1200 foot climb Mon and 50 miles Wed. If it turns out like last week I will do a 50 mile ride this weekend but I am getting my 2nd covid vaccine shot tomorrow and not sure if I am going to feel this one more than the first. I wish my fitness was some indication of the future success of my treatments but I know its not. I would be OK like this the rest of my life but thats not an option because ADT will fail eventually. I am on the young side and my Gleason score is low compared to many in this group so no doubt thats a factor as well. When I ride hard it feels like the physical aspect of the battle with my disease. So I push myself hard and until I feel my fitness moving backwards I plan and keeping it up. I will note that the riders I am aware of on this forum that are still very active all were doing it long before they were dx. They just refused to stop because of it. So my plans for this summer are much bigger than last and I will live one day at a time and enjoy this life as best I am able and hope I am able to do it when it arrives. I wish you the best and encourage you to not sit still unless your Dr tells you too. Mine has only encouraged me to keep it up. Best to you in your journey.

[Hidden in reply to treedown]

Are you still on schedule to stop ADT in July? I am.

[treedown in reply to Hidden]

October should all things remain the same.

[Hidden in reply to treedown]

My last eligard is July...I have Zytiga refills to October but I think I can stop the Zytiga in July. I want to stop the prednisone.My T is < 3 ng/dl. I doubt it'll rise before March 2022.

2nd Vaccine shot today...so far so good. Apparently the SEs can be worse with the 2nd shot. Pfizer.

[treedown in reply to Hidden]

My last Lupron is June 24. I will take Zytiga until Oct. My last testerone test was <1. So yeah I don't expect it to return soon.

[jjpeabody]

Great post JP, thanks for the valuable lessons learned, makes since and relatively easy adjustments. Plus glad to hear your optimism. Best of luck going forward and for a speedy recovery. Would be interested on how SRT affected incontinence side effects. I met with urologists yesterday and he wants to either do a sling or AUS every time I talk to him, I'm basically only using 1 pad and don't mind it. He, and the RO, just say incontinence will get worse after SRT and he wants to do these surgeries beforehand. If I do SRT, I prefer to see how it comes out before considering an AUS. Take care, Jim

[keepinon in reply to jjpeabody]

I was hoping my incontinence would not get worse after SRT. It did get a little worse during, which upset me because my RO said it would stay the same. About 3 weeks after finishing SRT I got back to my pre SRT levels, about 1 pad a day. 4 months later it had improved enough where I do not need a pad at all. Some days I do squirt here and there, but again, not enough to wear a pad. Maybe you might have the same luck.

[jjpeabody in reply to keepinon]

Just the kind of reply I could hope for Keepinon. I looked at your profile and and it was very helpful info. If I do the SRT I will want to do the lupron and Zytiga for at least 12 months also. Thank you again.

[JPnSD in reply to jjpeabody]

I was basically able to get over incontinence (no pads) by 4 months post-op from RP using Kegels. Salvage radiation at 33 sessions has not brought any incontinence back. Fingers crossed the next 5 sessions do not change that situation.

[ocman]

What probiotics were you using?

[JPnSD in reply to ocman]

Digestive Advantage (both capsules and chewables). Not sure the brand makes much difference.

[ragnar2020]

Hello JPnSD,

I’d like to endorse the recommendation for using the under the toilet seat bidet from Amazon. I don’t recall now where I heard about this device, but I obtained one a year and a half ago immediately following my RARP, and it has been terrific for the elimination of the rectal anus area irritation. With the shortage of TP during thé pandemic lockdown, just using a single sheet to pat dry after a clean water washing has been a bonus. This is a wise piece of information to help deal with a nasty SE of PCa recovery.

Jeff

[fluffyfur]

Hubs completed salvage in September of 2020. He was very fatigued. He enrolled in a clinical trial for radiation fatigue at MD Anderson where he had to walk two miles a day, as well as do some light weight training. He said it helped his fatigue.

[j-o-h-n]

I had 39 rads to my bed..... with no issues...... except a couple of years later they found that one of my urinary tracts was fried and required in and out stents for a while. Stents up the down the willy was not an issue....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/09/2021 11:30 PM DST

[Hidden in reply to j-o-h-n]

😳

[Hidden]

Great advice . Hydration and probiotics .