Tip for pain during salvage IMRT - Advanced Prostate...

Advanced Prostate Cancer

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Tip for pain during salvage IMRT

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After a month of radiation I was getting extreme pain during defecation, particularly bad was uncontrollable spasms in my butt during defecation and even during urination. No one told me about changing diet till now.

Anyway, problem fixed, almost instantly, by taking Imodium (with simethicone) which killed the spasms and changing diet to eliminate fats, fried foods, and fiber. I can share recipes if anyone likes. It’s an odd adaptation but it works, the horrible pain is gone and I can keep exercising, which has been key for me getting through RT both physically and psychologically.

Any other tips i’m missing?

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14 Replies
pjoshea13 profile image
pjoshea13

Imodium at twice the maximum dose had no effect on me. Nor did a steroid suppository.

We were invited out to dinner one day & I was a little nervous, since our friends were preparing a Mexican meal & grew their own hot peppers which they ate almost every day. The meal turned out to bland & heavy on beans & cheese (fat & fiber), but my bowels were happy the next day. Still, I had no intention of switching to bad Mexican food, so I put up with radiation side effects for over a year.

I'm glad that you have found relief, & perhaps others will too. It's a subject that is often not discussed.

-Patrick

Shhh, now everybody will want the same and there isn't enough to go around.

in reply to

Paddle up the ass. Mild compared to what APC can do to us.

Sculler profile image
Sculler

My husband starts his salvage radiation next Wednesday, if you have any tips to share we welcome them. I made a note of the Imodium.

They did tell us no fat or fiber.

Thanks Nalakrats for reminding me of the paddle, we will ask about that.

We exercise regularly and it seems to help with the side effects of the Lupron, so far. One question we had was , Is it better to get monthly Lupron shots vs 3 month shots?

Thank you

j-o-h-n profile image
j-o-h-n in reply toSculler

Well I"ll give you my experience with salvage radiation. But remember we are NOT all the same. I had 8 weeks (39 sessions) of radiation, 5 days a week (minus 1 day) excluding weekends. For me it was like getting an ex-ray at the dentist. No issues, no problems, no pain, no symptoms no nutttin no side effects. However a couple of years later it was discovered (via MRI) that my left urinary tract was "crimped" and doctors guessed it was due to either passing kidney stones or from radiation. So in went a stent, out went a stent etc. for many years. So now no more stent... note: the in and out is really nuttin to worry about it's a breeze.

That's it (my bill is on the way).

BTW Where are you located (not for billing purposes just general knowledge), where is your boss (oops meant horse, since you're the boss) being treated and doctor(s) name(s)?

This info helps us help you two.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/14/2019 7:23 PM EST

Sculler profile image
Sculler in reply toj-o-h-n

Lol, the horses barn is in northern Ca Kaiser , Dr Hsu did surgery in Santa Clara Dec 2017 , but treatment for salvage radiation is in Kaiser Sacramento, Dr lee. Thank you for sharing your experience and keeping good humor , we should all have a little ice cream with that plant based diet!

j-o-h-n profile image
j-o-h-n in reply toSculler

Thanks for the info and the humor... so I wish you:

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/16/2019 10:11 AM EST

in reply toj-o-h-n

You did your stint with stints... the best day is the last day they remove all stints. That is the goal. ...you ve been thru the ringer ..and then easy bake session like I.. easy speasy until the fatigue bat sets in. . Fuerte Hombre. Y Cubano tambien .. ? Eres mucho .. !

in reply toj-o-h-n

When they change the stents out every three months ,a good drug Dr can give you propathal , the stuff that Michael Jackson told his Dr to put him to sleep with for 3 days.. Didn’t really work out for MJ .. or maybe it did. any way MJ new a good drug when he saw it.. It’s awesome stuff. When they pulled my final stent out the guy said this will relax ya. Then I told my wife and the nurse “ I’m ready to go” They laughed together and said you’re already done ! mofo ... no pain no memory after or sick feeling . Go propathal ..

j-o-h-n profile image
j-o-h-n in reply to

Well we've both been through the ringer.🤜🤛 I never had to take anything for inserting and removing a stent. It was absolutely nothing. In fact one time is was pleasurable. I guess I was/am lucky. If propathal is anything like nitrous oxide (laughing gas) bring it on.... Used to get it from my dentist... but no more.

"no pain no memory after or sick feeling . Go nitrous oxide". However I was able to do the Moon Walk for a couple of days... Here's me in a demo:

youtube.com/watch?v=E_FzgtL...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/16/2019 9:53 PM EST

in reply toj-o-h-n

always wanted to know how to do that. If Only i didn’t have two left feet it might work out. The wedding dancers got down too. Thanks

Practice wiping after defecation using a wad of toilet paper moistened in the middle with warm water. The real key for me was the imodium with simethicone (for gas). I was in agony for two days prior, as no one had warned me. The s/e started happening at the end of the first 4 weeks. Anyway, relief was immediate and I am fine since. Low fat, nothing fried, and low fibre. Oh, and drink extra water. The imodium I used two pills on the first day, then one a day for two days and then I stopped and it's fine ever since. I find exercise helps a lot. Can't always exercise so strike when the iron is hot and make it a high priority.

Sculler profile image
Sculler in reply to

Thank you , glad to hear that you are doing well with the treatment now and hope your new username can be PSA0point 00 when this treatment is over.

we have made exercise a high priority as it’s helping with the Lupron. We’ll try and keep the diet low fiber, with plenty of water.

The guidance is very helpful,

Have a good weekend.

Mama Mia ! So good you escaped that torture .

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