Adjuvant RT Experiences

Hello - I finally started my ART sessions this last week at 5 mos post-op, had practice session plus 3 treatments. Was a big decision to make plus a spring vacation, wife's knee replacement surgery, and a few other things that had to be done that occupied my time for 3 weeks in March so April it was and there were a few things to do to get ready for the actual treatments which killed a couple of more weeks.

So my questions are for those who have experienced ART or SRT fairly soon after surgery with the full knowledge that everyone's experience is different but there ought to be some common experiences. Obviously, I don't feel any effects yet and pretty much have my prep figured out now and all my appts will be at 9:00am from now on which will help with that.

1. What is the first side effect that you noticed and how many days/weeks into the 7 week process did it occur? Tiredness, urinary, bowel?
2. If applicable, at what point during the treatments did you feel like you could not plan ahead for things like meeting up with people, appointments, going out for dinner not knowing how you would feel?
3. When did you feel you were over the worst of whatever SE's you had and were on the upswing?

I am just trying to gauge how the next couple of months will play out, looking specifically at Memorial Day weekend as an example which will be around 4-5 weeks in and possibly 4th of July time frame which is a few weeks after treatments for traveling.

ps: I am fully continent and recovered very soon after the catheter was out if that helps at all.

Thanks

Hi Mumbo, Dave finished his seven-week ART three weeks ago. (No HT) The side effect that hit him hardest was the fatigue, which started about the halfway point. It continued throughout, getting a little heavier towards the end. And now it is just starting to subside. It was not enough to make him a couch potato, but he did curtail some more strenuous activities, took occasional naps, and slept a little longer at night. He is retired, so no scheduling problems.

He did notice some urinary urgency about halfway, but it was manageable. (Except a few times when there was a delay for radiation.) He found that coffee and alcohol made the urgency worse, so he cut that out which helped. No issues with bowels. We changed his diet a bit, cutting back on fiber foods, fruits, vegetables, so that may have helped.

Mentally and emotionally it was a drain for him, but he seemed to appreciate having me accompany him, and do the driving/parking. And I kinda gave him a pass regarding his man chores around the house.

Good luck to you! It seemed like the last two weeks were the roughest, but then boom it was over and he was ringing the bell.

My eight weeks of ART finally got underway nearly one full year after RP (a lot happened during that year) and despite being put on a special low fiber low gas diet, I began having bowel issues midway thru the second week... explosive gas, frequent diarrhea, tenesmus and mucous discharge. My RO seemed unconcerned and merely said that "some bowel disruption is to be expected".

Several times I was so dehydrated from diarrhea that the techs told me if I came in that way the next day they would not treat me. Fortunately I made it every day. But half way thru the eight weeks, hurricane Irma knocked out power for much of the state, and the clinic staff brought us in over the weekend to get additional treatments in anticipation of the outage.

I was to drink a quart (32oz) water two hours before Tx and hold it, which was not a problem because I needed an artificial sphincter implant before I could start RT. But drinking that much water in an hour made me nauseous and I found drinking 12 oz fruit punch with 20oz water worked well.

By the third or fourth week I usually needed a nap after treatment. I am retired and the clinic is just around the corner from my home, so I would just drive home and sleep for an hour or two. Weeks 7 and 8 were the worst for fatigue, and by this time I was bleeding rectally. The RO recommended that I remain on the special diet for a month afterwards. Two weeks after completing ART I began anticonvulsant therapy for glossopharyngeal neuralgia. That was Halloween 2017.

A month later our younger son and his family joined us for Thanksgiving and a week at Universal Studios in Orlando. I do remember sitting out some of the rides but for the most part I was able to stay awake and enjoy the parks with the grandkids. Those plans had been made long before my PCa diagnosis and nothing was going to make me miss out on it. But I remember having read other guys say that the fatigue lasted 4-6 weeks after the end of RT and that's pretty much what I experienced too.

Six months after completion I had a colonoscopy and was diagnosed with radiation colitis (pelvic radiation disease). Another six months I had surgery to remove an abdominal mass and Dx'd with sclerosing mesenteritis. During that first year post-RT I had diminished urinary capacity and reduced urine flow (peeing more often but lesser volume), but that seems to have largely returned to normal just recently. My RO retired soon after my Tx and I never saw him or another RO again. And there was no bell to ring at the end of the eight weeks.

2. If applicable, at what point during the treatments did you feel like you could not plan ahead for things like meeting up with people, appointments, going out for dinner not knowing how you would feel?

Fortunately, I never felt that I couldn't do things. I did take it easy with lifting but walked a lot during breaks from work and after work. I did work from home, I'm in finance, two times during the 7 1/2 weeks.

There were a couple of issues with the IMRT machine that caused me to miss two sessions that I had to make up. Plan on having to have a couple of days tacked on just in case.

No HT for me either at this point in time. My RO met with me every Tuesday (was the time to talk about the urinary flow issues). The RO will probably meet with you 4 weeks after last dose. Then they set up something for me in September - seemed like a bit of overkill to me but we'll see how it goes.

Techs were awesome - we did a Harry's & David fruit and chocolate basket for the office when I was done.

I've managed to forget most of my ART experience, but I did a day by day diary that is linked in my signature. It was a running discussion with Purgatory and English Alf.

Have a look. Any questions, let me know, I'll try to help.

Thanks 142, will take a look at it.

Mumbo,
My ART was atypical in that my post RP PSA was 0.2 with a positive margin, so I started ART about 11 weeks post surgery. Soon after surgery I was fully continent. Following RT I recovered to using a “just in case” pad each day to catch a few dribbles, which I continue to do.

A couple of thoughts:
1. I had a little tiredness halfway through the 7 weeks. I was very lucky about lack of significant side effects.
2. I had regained complete urinary continence by the time I started RT about 11 months after surgery. Several months after the RT was over I began dribbling again, especially in the evening or after drinking alcohol. Still dribbling a bit 18 months later.

Mumbo said...

1. What is the first side effect that you noticed and how many days/weeks into the 7 week process did it occur? Tiredness, urinary, bowel?

Three side effects, none that bad. about four weeks in: hemorrhoids (treated successfully by my RO w/ cortisone suppositories) and odd, gooey bowel movements with some slight tendency to spatter while passing wind. Six weeks in, minor fatigue. The fatigue didn't present much difficulty with most activities. As long as I was busy and engaged I was fine but if I stopped for a quiet moment I would fall asleep. The main effect of this was that my wife had to tell me how TV shows ended because, sitting in my comfy chair in a darkened room I would reliably fall asleep before the end of a one-hour whodunit. The fatigue was mostly gone six weeks after treatments ended.
These seem to be the most common problems men report. None are generally insuperable. For the untrustworthy farting problem I can offer some terminology so you can sound erudite while you complain. Battle at Thunderblow : the great crepitation contest of 1946

Mumbo said...

2. If applicable, at what point during the treatments did you feel like you could not plan ahead for things like meeting up with people, appointments, going out for dinner not knowing how you would feel?

I worked throughtout, no problems. The two instances where I needed to plan ahead were: 1) locating places to stop and pee along my route back home after treatment in case there were traffic delays, and 2) observing the buddy system for watching TV so there would be someone awake at the end of the show to tell me who was discovered to be the perpetrator and how (s)he was caught.

Mumbo said...

3. When did you feel you were over the worst of whatever SE's you had and were on the upswing?

I was pretty much back to normal six weeks after treatments ended. The slight fatigue was the most lingering effect.

Mumbo said...

ps: I am fully continent and recovered very soon after the catheter was out if that helps at all.

It helps quite a bit, actually. The main drawback to ART is that it interferes with recovery of continence after surgery. You should do fine.

Mumbo said...
Thanks -
...
I am on my 10th treatment today and the only issue so far is a rash I developed in the general lower abdomen/groin area that my RO says is not radiation related or at least he has never hear of it nor should the skin get enough radiation to cause it. If it is not one thing, it is another in this journey.

I'll disagree. My techs expected, and I had, some mild "sunburn" like rash around the same path the RT equipment followed.

Some lubriderm and it sorted out eventually.

142 - And now the rash is gone... It had a very distinct pattern, starting in pubic area above penis and then slowly spread symmetrically out to both hips, was not typical of a rash. Actually went between the three tattoo dots I have for the Varian machine setup in an approximate triangular shape. I think it must of been an initial reaction like a sunburn and ran its course over a week with some creams helping until it was gone. No idea really but my best guess for now.

Managing your bladder is one of the greatest challenges of RT. I had a couple of small accidents on the table, but another fellow getting treated at the same time as me lost it in a big way on his way to the toilet one day after his treatment. The staff has seen it all and takes everything in stride. All in all it seems that you are doing pretty well in the side effects department. I'm glad you have a sense of humor about it all. I hope it continues that way!

Zero problem. I had 39 treatments for a total of 70.2 grays. I would get up at 4:30 every morning for my 30 to 45 minute drive to work and on the way home I would swing by the radiation center to get nuked. I never changed my diet or daily routine. Never had any urinary or GI track problems.

For me it was a non event. Doing my exit exam with the RO, I honestly asked him if he had the beam turned on.