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Starting radiation on Monday, looking for advice

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Posted 9/14/2018 1:18 PM (GMT 0)
I am starting my 28 treatments of IMRT on Monday and I am looking for some advice from those who have already completed. I understand they want full bladder and empty colon everyday. I am not so concerned about the full bladder as I can control water intake. I am more concerned on how to insure empty colon everyday. Any tips on what to eat or not eat and maybe a routine used that I can consider. Also how strict are they on the empty colon/gas bubbles? Also, I understand that walking and regular exercise is helpful. Is it better to exercise before or after treatments... or doesn't matter... What about hydration? Other than the drinking needed to meet the full bladder requirement, is it better to drink more or less water during the days of radiation treatments? Also should I stay away from alcohol and caffeine? Any other suggestions to make the process run as smooth as possible? regards MJ
Posted 9/14/2018 1:39 PM (GMT 0)
When I did my RT they didn’t say anything about an empty colon but they would take you off the rack if the pre-scan showed a low bladder. Your bladder doesn’t have to bursting and you will learn by experimention how much to drink. For me, a half-bottle one hour prior to scan and the other half 30 minutes before scan worked every time. Caffeine shouldn’t matter, other than the effect on your urgency to pee. Fatigue was never an issue for me. As you get closer to the end of the treatments you may need to be near a toilet at all times.🙂
Posted 9/14/2018 1:42 PM (GMT 0)
MJ1961... Hi the walking part you have 100% correct walk before and after as much as your able to helps greatly with the radiation SE's. Also although your not doing ADT at this time if you read thru the ADT and SRT thread there are lots of guys with lots of different experiences and se's it should help you see what other guys have done. Wishing you the best in your treatments!!

Larry
Posted 9/14/2018 1:57 PM (GMT 0)
You hit the major points already. My other advice: complain to doc/nurse/techs about every little new ache and pain. They can help you get over those problems and I found the staff to be friendly and more than willing to help you with any minor issue that came by.

I had an early morning appointment and my legs were always cold. I mentioned this once to the tech and everyday after that they brought me a warm blanket (one from the blanket warmer).

It's a marathon,
Andrew
Posted 9/14/2018 2:28 PM (GMT 0)
It also helps to limit or even eliminate caffeine, carbonated and acidic drinks. These are tough on the urinary system. Water and green tea are great. Some limit high fiber food, but I did not change my food as I have a very balanced diet. I did keep Immodium D handy, but never used it. I was also on a daily Flowmax (in the form of Jalyn).

The only short term radiation side effects I had were some increased urgency and frequency of urinary and bowel. Never a problem, just went more often than before. That all went back to normal about two weeks after completing the radiation.
Posted 9/14/2018 3:38 PM (GMT 0)
and - don't trust a fart.

Loose bowels happens to some.

Andrew
Posted 9/14/2018 4:21 PM (GMT 0)
I was required to have a full bladder, but I had no guidance re my colon. about the only thing I'd say is that while the actual treatment (i.e. lying in the machine) is pretty much a non event, the whole process can wear you down over time. So stay active, treat yourself well and celebrate milestones as they occur. (Hey, one week down!)

I remember somewhere here (perhaps one of the mods) that had enough water bottles in his trunk to fill his bladder each day for the duration of his treatment. And that as as the bottle dwindled down it gave him a visual signal of how he was progressing through his treatment...
Posted 9/14/2018 4:40 PM (GMT 0)
With some practice over about 3 weeks I was able to regulate my system to have the empty colon at the right time. I'm kind of a "morning person" for that function anyway, so if urges came too early I'd wait an hour or two. If nothing was happening by the desired time, I'd go "try". After a couple of weeks, my body became quite regular to within about +/- 30 minutes, about 1-2 hours before my treatment time. It stayed consistent through the entire nine weeks of my IGRT series. So no special prep, just some practice to train my system to be on time.

I was told to avoid carbonated beverages and gas-inducing foods so the colon wouldn't be moving during the treatment process. Also, they suggested avoiding caffeine due to irritability of the urinary tract. So, for over two months I couldn't have coffee. Gack! Fortunately, Earl Grey or English Breakfast tea are enjoyable so they became my daily go-to. Oddly enough, to this very day I don't really care for carbonated beverages anymore. Just lost my taste for them, and they make me feel so bloated.

The goal in all of this is so your innards are in a predictable and stable condition at each radiation session.
Posted 9/14/2018 4:58 PM (GMT 0)
KEGEL, KEGEL, KEGEL!!!! I kegel all the time especially at night before bed on my side. Also, I took Citrucel to keep bowel movements regular. I am on the Mediterranean DIET......like was said before....no Caffeine, alcohol especially beer, exercise etc.! I drank Green Tea. Like Andrew (In the Shop) told me about IMRT...."it is a marathon, not a sprint"! yeah
Posted 9/14/2018 6:29 PM (GMT 0)
I took Metamucil twice daily and 2 tablespoon Milk of Magnesia at bedtime. Worked for me. However, I only did 15 fractions of external beam. Near the end, I needed to go on once daily Flomax to help with urine flow. I did my HDR brachy one week ago, so far so good. Still taking the once daily Flomax. Also, I have a little numbness and will try Viagra. Hoping this passes; I've read it often does. In retrospect, I think SBRT boost might be the ideal way to go given its superior side effects profile. It's just so challenging when you are diagnosed to sort it all out. The shock, understanding biopsy, learning treatment technologies and matching the array of options to your risk profile, finding providers. I was exhausted when I finally worked through this and found an HDR boost provider nearby. In retrospect it might have been better to keep looking for sbrt. Hindsight is 20-20. Good luck to you!

edit - just noticed numbness almost gone. Temp. trauma. Off topic but maybe somebody was curious relative to their treatment.

Post Edited (Steve Smith) : 9/14/2018 3:56:48 PM (GMT-6)

Posted 9/14/2018 8:02 PM (GMT 0)
Is this a mono therapy; are you receiving this just to the prostate or pelvis area as there is a little bit of a difference?
You don't mention the amount of Grays you will be receiving.
I just had my 12th treatment, have not changed my diet at all, but will if need be. My treatments are at 7:45am and I drink coffee around 4:30 and yet to have an issue.
But everyone is different.
Its a drag is what it is.
Posted 9/14/2018 8:24 PM (GMT 0)

ldog said...
Its a drag is what it is.

More of a grind than anything for me.....It was a big disruption and inconvenience in life......hopefully that is all it is for everyone here!! yeah
Posted 9/14/2018 9:23 PM (GMT 0)
As you may have noticed from the above, the protocols vary substantially. I would adhere to the one your radiation oncology group prescribed.
Posted 9/14/2018 10:37 PM (GMT 0)
All - thanks for sharing your thoughts and experiences, I am taking notes.... I will clarify the empty colon question during my practice run on Monday.

Dbell and JNF - both of you guys mentioned green tea. Can you give more details... Hot or Cold? Did you make from tea bags? I occasionally buy Arizona Diet Green tea with no caffeine at the grocery store... Do you buy something like that? Any additional details will be helpful

ldog - this will not be mono-therapy. I will be having the 28 treatments of IMRT and 2 treatments of HDR. I did not make any notes but believe the doctor told me 69 Grays total with 50 Grays from IMRT and 19 Grays from HDR. I had originally planned on HDR as a mono-therapy but my second biopsy more positive cores and a higher Gleason score than my original biopsy.

regards MJ
Posted 9/15/2018 12:28 AM (GMT 0)
MJ, I just used green tea from tea bags - HOT instead of coffee! yeah
Posted 9/15/2018 12:32 AM (GMT 0)
I am not sure if this is good or bad although I told my RO and he didn’t reject it
I did coffee enema almost every day or every other day.
Posted 9/15/2018 5:53 PM (GMT 0)
For bladder volume consistency, I used a portable urinal that I put in my gym bag to measure volume after radiation. Over a few days I got a good sense of correlation of bladder fullness to volume - after all my sessions the technicians commented how little my bladder volume changed day to day - and only then did I tell them how I achieved that. Sometimes I had to let a little urine out as I was too full and in discomfort. I recommend this approach.
ALso, regarding bowels, I avoided anything that was mildly constipating -no cheese or pizza the day before my mid morning radiation, for example. This ensured I had a normal bowel movement after breakfast and ahead of radiation. no need for enema.

Consistency is important - same colon status and same bladder status. Also avoid gas producing foods - beans, cabbage etc. Too much gas distends the colon and will cause issues - and possibly delay your treatment. No so easy to pass gas with a very full bladder.

Good luck
Posted 9/15/2018 5:55 PM (GMT 0)
I was not advised to have an empty colon. That makes no sense and would require an enema every day. But in order to avoid gas don’t eat foods that cause gas because it impacts location of the prostate.
Bob
Posted 9/15/2018 10:22 PM (GMT 0)
I didn’t receive the advice about the empty colon either, but the full bladder was a must. I went to work everyday after radiation and the SE were not so bad that I couldn’t get out to ride my bike on the weekend. I did end up taking the last two Fridays of the treatment off from work due to fatigue, but still managed to ride my bike in a 50 mile LIVESTRONG event two days after my last treatment.
Posted 9/15/2018 10:27 PM (GMT 0)
MJ, I start a week from Monday. MSKCC has a protocol that I follow for colon emptying....

They had me start Metamucil 1x a day every day 2 days before my simulation. And told me to continue it daily now through my 40 treatments. Also told me to take 2 Gassman extra strength tablets the night before and morning of my simulation, not sure if they will have me do that during treatment.

My first week I am scheduled for even9ng treatments, th3n the next 7nweeks early morning so I’ll ask if I can take Metamucil 2x a day. Can’t see why not
Posted 9/15/2018 10:27 PM (GMT 0)
MJ, I start a week from Monday. MSKCC has a protocol that I follow for colon emptying....

They had me start Metamucil 1x a day every day 2 days before my simulation. And told me to continue it daily now through my 40 treatments. Also told me to take 2 Gassman extra strength tablets the night before and morning of my simulation, not sure if they will have me do that during treatment.

My first week I am scheduled for even9ng treatments, th3n the next 7nweeks early morning so I’ll ask if I can take Metamucil 2x a day. Can’t see why not

Ask your treatment team about Metamucil, it seems to work well for me.
Posted 9/16/2018 12:14 AM (GMT 0)

Pratoman said...
MJ, I start a week from Monday. MSKCC has a protocol that I follow for colon emptying....

They had me start Metamucil 1x a day every day 2 days before my simulation. And told me to continue it daily now through my 40 treatments. Also told me to take 2 Gassman extra strength tablets the night before and morning of my simulation, not sure if they will have me do that during treatment.

Basically the same protocl for me with two Citrucel and 2 gas X per day for the duration of treatment....also at MSKCC! yeah
Posted 9/16/2018 12:23 AM (GMT 0)
The treatments quickly become a Groundhog Day experience. The monotony, once you have a successful routine, for me was a hassle. I too had 28 treatments, I was happy that I didn’t have 44.
Posted 9/16/2018 3:56 AM (GMT 0)

LifeCointosses said...
The treatments quickly become a Groundhog Day experience. The monotony, once you have a successful routine, for me was a hassle. I too had 28 treatments, I was happy that I didn’t have 44.

Groundhog day - good description.
Posted 9/16/2018 4:04 AM (GMT 0)
Groundhog day - Excellent description and the reality, same thing, day after boring day.
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