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Progress. . . and a question about radiation treatment prep

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Posted 9/28/2016 6:15 PM (GMT 0)
I just got back from a visit with my RO's nurse for initial "education and planning" and to take blood for my official pre-treatment PSA and T levels.

I now have appointments for my fiducial implant procedure (yuk!) on October 7 and for my CT scans on October 14. We expect that actual treatment will be scheduled to begin a couple of weeks after.

They haven't mentioned if they plan a simulation session prior to the first treatment, but if so, I'll just be there too.

My question is about diet before and during radiation treatment. They instructed me to avoid foods that cause intestinal gas, citing the obvious ones like beans, cabbage, cauliflower, etc. Where they surprised me was when they also cautioned the patient not to eat potatoes and bread. Really? I've not noticed these foods to cause gas for me. By the time you exclude all of their list, there really isn't much left to eat!

So, fellow raddies, what foods did you really have to avoid, and which ones are false warnings? What were you actually able to eat? I don't want to lose any more weight than I have to, and enemas 5 days out of 10 for the treatments will be bad enough.
Posted 9/28/2016 6:38 PM (GMT 0)
I didn't really avoid any foods during radiation. I did cut back a bit on high fiber foods, but other than that I stay on my regular diet.

Just one bit of advice: don't trust a fart. During RT that might be more than gas.

Andrew
Posted 9/28/2016 7:16 PM (GMT 0)
I eliminated caffeine, acidic, and carbonated beverages. These are tough on the urinary tract. As to solids, I made no changes. I eat a very balanced diet with low sugar, high fruits and vegetables, and moderate in protiens. Never had any problems. I was advised to keep some Immodium D handy, but never used it. Radiation will generally induce greater frequency and urgency in habits and some find they are more gassy and have looser stools, but not all do.
Posted 9/28/2016 7:26 PM (GMT 0)
Hello Paxton!...no help here , but I`m getting my markers on the 7 th also ......so, Im wondering about the same stuff ....be glad to get this show on the road ....good luck with your start up ....keep us posted bro ....David
Posted 9/28/2016 8:09 PM (GMT 0)
I had no special dietary restrictions either.

BTW, the first 2 fiducial placements were a piece of cake but that third one expanded my vocabulary. The radiation itself was uneventful, SBRT at UCLA almost 2 years ago. No adverse side effects and PSA remains <0.01
Posted 9/28/2016 8:59 PM (GMT 0)

Paxton said...
...and enemas 5 days out of 10 for the treatments will be bad enough.

I hadn't seen anyone mention this before. There is a need for regular enemas with radiation therapy?

- Bill
Posted 9/28/2016 9:00 PM (GMT 0)
Well - the thing I am concerned about is GAS. The nurse told me the standard horror stories about guys who came in for treatment but had gas bubbles in their intestine or rectum, and the machine just stopped because their prostate moved. I want to minimize the chances of that, but how many of us realize just how often we pass gas? Unless they are truly memorable, I just don't notice them.

Nomar - they tell me that I will have only two "placements" as they use threaded fiducials, with two on each thread. I guess that is better for the patient, and they seem to feel it is best for their needs. They also told me the stories about guys who had their uro place the fiducials only to find that the CK folks needed them placed differently, so the poor guys had to do it all over again. I guess the pain is OK, if it only happens once!

Drifter - does this mean that we get to create a "CK class of fall, 2016?" Or, do we just get lost in the "Class of 2016" group?
Posted 9/28/2016 10:02 PM (GMT 0)
I just completed #16 of 38 IMRT for SRT. No mention of any dietary restrictions but RO has me taking gas-X daily. Only one session where rectal material was an issue so far. I've gotten into a cycle of going before prepping the bladder. Only told to do a fleets before CT. Have had two of them, one initially for planning and another along the way to make adjustments in treatment plan. I have more issues with the full bladder than anything.
Posted 9/28/2016 10:18 PM (GMT 0)
I had salvage radiotherapy 9 months (70.2 grays, 39 treatments) and my R.O. told me not to change my habits including dietary. He told me that if there is a problem during treatment we can make minor adjustments.

I never had any GI or urinary problems during or after treatment. I also continue to use Psyllium fiber every morning without any problems.
Posted 9/28/2016 10:29 PM (GMT 0)
I'm on getting 19th of 40 today. I'm pretty sure you will have a rehearsal before they start actual treatment. Last week the nutritionist came out with a bundle of papers stapled together about what to eat and drink. She told me it wasn't that I was being targeted just that everyone was getting the list.

I stopped carbonated beverages and caffeine but haven't changed much els. Lower fiber diet though.

The worst part is timing the bladder thing ' I'm trying to get 24 oz down one hr prior. It seems to change every day and it's not fun when they are running late.

Glad you guys are getting going and good luck!

The Artistic One - Mark
Posted 9/28/2016 10:47 PM (GMT 0)

Paxton said...
They haven't mentioned if they plan a simulation session prior to the first treatment, but if so, I'll just be there too.

The CT you get after the fiducials is for the simulations. After they take your picture, they take a lot of time running computer simulations with lots of different beam placement scenarios to determine the optimum beam placements that meet all their prostate dose delivery targets and dose constraints for organs at risk. You won't be there for that.

I didn't have any diet restrictions or enemas whatever because my machine was very fast. I think they want to avoid any movement caused by gas or large stool passing into the rectum during each treatment. Why not eat filet mignon and chateau margaux? You deserve it.
Posted 9/28/2016 11:10 PM (GMT 0)
Hello Paxton, try to avoid gassy stuff.They will ask you to take beanos or another gas reducer.When you are undergoing the Cyberknife treatment,if there is gas in your system they stop the machine and the tech will come in the room and ask you to put your legs up to your chest to pass gas.It happened to me a few times,no big deal. It delays the process a bit but its OK.Dr.Hirschs team will get you thru it as they did me. Good Luck going forward.
Posted 9/28/2016 11:22 PM (GMT 0)
I scheduled my sessions to be the first one every morning, 6:00am. I wanted to beat the traffic and avoid any work disruptions. The problem with doing it so early was I had to wake at 4:00am just to get my bowels working. I always felt like I hadn't totally vacated my bowels by the time I got on the table. But the techs said it was the gas they were more concerned about. They only had to stop the machine one time to relieve some gas using a long rubber tube. I did feel sorry for the tech and a little disappointed but they're used to it. I blame the greasy sloppy joes I had the night before. So avoid any greasy foods and take a couple of Beano's every day and you should be ok.
Posted 9/29/2016 1:31 AM (GMT 0)
Can anyone explain why different treatments apparently require so much prep? I assume equipment, but why the fiducials rather than tatoo or other markers. Why the diet restriction..etc? I had IMRT and was told to just show up with a full bladder each day. They did have a form that kept me in the same position, but none of this other stuff.
Posted 9/29/2016 2:26 AM (GMT 0)
lifeguyd-

Everyone gets tattoos (I got plastic ones that came off with alcohol). They are used to do the rough positioning of the table at the start of each session.

Most get fiducials or transponders for primary therapy. That's what IGRT is. It allows for finer positioning at the start of each session (for IMRT) and within each session (for SBRT). They light up when the cone beam CT or stereo Xrays shine on them, or when the transponders react to an RF signal. Sort of a GPS for the prostate. Some only use a rectal balloon to stick the prostate in place.

When there is no prostate, as with SRT, the use is more controversial. My RO at UCLA and ROs at UCSF routinely place them in the wall of the prostate bed. They believe a 5 mm error is too much, and may cause excess toxicity. As Mack Roach (of UCSF) pointed out, it gets especially important when the entire pelvis is treated because the various parts all move separately. Some just look for soft tissue landmarks and believe that works just as well.

The diet restrictions are because gas or food moving through the bowels can change the shape and relative position of the pelvic organs dramatically. Then the beam might not hit where it is supposed to go. On a really fast machine with good IGRT it may not matter so much. But on slower machines with just the tattoos it can mean many beams miss their target.
Posted 9/29/2016 2:36 AM (GMT 0)
I don't know why there's so much difference. My guidelines were fairly specific, but not too difficult. The IGRT therapy I had allowed accuracy down to the millimeter level, so that's why I had fiducials. Also, going to 79.2 Gy is about as high as they can safely go, and it needs to be accurately delivered. (Interestingly, that is some kind of average level. I took a photo of my actual treatment plan, a color picture, and it shows the point within the prostate of maximum dose, and it was a good deal higher at 83.2 Gy. A well-cooked prostate.)

The Varian Trilogy with Rapidarc that was used for my treatments was pretty fast. One smooth arc each direction continuously delivered a modulated and shaped beam, taking one minute each direction (I counted). Around 10-12 minutes from walking in to walking out of the suite.

Regarding markers, I did have fiducials (three). During the CT planning session, they also placed the skin "tattoo" marks, which were later used during each session. The skin tattoos allowed rough alignment with lasers in the RT room, then the pre-treatment x-rays pinpointed the fiducials to allow precise alignment. Usually it felt like they only shifted me around a few millimeters at the most from the laser alignment to the x-ray alignment. My skin tattoos were disappointing, just Sharpie markers with a thin breathable plastic film adhered over them. They only replaced that film once in 9 weeks, and I had no restrictions about showering with them or anything.

My diet restrictions were similar to others: no caffeine (no coffee, yikes!), and no carbonated beverages. Otherwise, avoid things I know to be "gassy", but nothing very major. It was torture not to have coffee, but I did it. Tea was ok. Oddly, to this day I have no desire anymore for carbonated beverages. From the time they took the x-ray alignment images until treatment was complete was probably well under five minutes, so the bowels couldn't move much in that short time. I consciously held quite still, and just breathed as shallowly as I could. As a trombonist, I'm very aware of my breathing. I used chest breathing without diaphragm movement. If you know how to do that, it's probably helpful.

Empty bowel about 2 hours before the session, was able to time that pretty well. Stopped water consumption at that time too, then about 14 ozs of water 30-40 minutes before the session. Worked out very well, unless there was a delay. That could become pretty uncomfortable!
Posted 9/29/2016 12:48 PM (GMT 0)
Thanks, everyone!

They haven't said a word about tattoos, so I'm not expecting any. If they do, no big deal. There's a first for everything, isn't there?

As for diet, I'll only have to be concerned for a couple of weeks, and I will have to just be as careful as possible about gas producing foods. The nurse said they used to instruct patients to use Beano, but they found that Beano actually caused gas for some patients, so they don't do that anymore. I think I may use some over-the-counter simethicone (gas reducer) as a precaution, though.

I'm getting more comfortable with the future and the plan. I hope to stay that way for a long time.

Thanks again, my mentors on this journey.
Posted 9/29/2016 1:47 PM (GMT 0)
My RO said don't eat anything with seeds or skins and no popcorn or peanuts. Inserting fiducials is no big deal, much easier than a biopsy.

Good luck

Carl
Posted 9/29/2016 2:08 PM (GMT 0)
I envy you guys that can empty your bowels on cue!!

Mel
Posted 9/29/2016 2:31 PM (GMT 0)

w0hll said...
My RO said don't eat anything with seeds or skins and no popcorn or peanuts. Inserting fiducials is no big deal, much easier than a biopsy.

Good luck

Carl

Really? With a lidocaine nerve block, my biopsy was a complete non-issue. I took my wife out to lunch afterward, and only had very minor discomfort for a few days after.
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