The good news is that my husband sailed thru the Orgovyx with no problems whatsoever, now is in his 6th month and is due to complete that treatment at the end of June. The bad news is that he has had 22 sessions of salvage RT. He is supposed to have a total of 38 however, he has developed severe cramping and diarrhea when he eats anything. He is drinking bone broth and eating white bread and chicken with the solids strained out of chicken soup. He did not feel well enough to go for his regularly scheduled treatment yesterday and we are now going up to see the RO this morning to see what to do next.
They have given him immodium and bentyl so far but he passed a 1 inch clot yestserday and today his watery poop is a bit pink in color. I am frightened that he may not be able to finish the treatments so we will only get the bad and not the possible good from this therapy. Has anyone gone through this difficulty and gotten past it? If so, what helped you?
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shihtzu124
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I had 38 sessions of RT myself but the only things I had experienced during RT treatments was a "sunburn" close to my anus after the 3rd or 4th session, minor diarrhea. some uretra irration that was dealt with using FlowMax and even more fatigue that when I was just on Lupron + Abiraterone.
Very sorry to read that your husband is having such as tough time with his RT sessions. Hopefully someone else here will have something better to suggest to you.
I did 30 sessions of External Beam Radiation treatment on prostate and lymph nodes in February 2022.
I got a lot of bleeding issues after. I peed a lot of blood for a while (ended up in the ER once) which continued for a few months, but then healed by itself. I also did bleed a lot when pooping (also for many months) and had to do Argon treatment in August 2023 which fixed the problem more or less.
I’m sorry I don’t have any suggestions, but I had some horrible problems for a good while following radiation and nowdays I’m not affected by it very much.
Thanks Mike, glad to hear you are finally doing better. I’ll have to read up on Argon treatments. I have never heard of that but this is all new territory for us.
I believe that one of the areas that is not discussed enough is the importance of the skills of the radiotherapists, and the initial setup, tattoos etc.The side effects of radiotherapy are perhaps not considered sufficiently during the treatment, it's what we all have to deal with after the treatment. I'm 6 months now and still getting up 3-4 times a night, oh what I'd give for a full night's sleep....
Were you offered a barrier between the bowel and prostate? In some clinics this is standard practice.
"... 22 sessions of salvage RT. He is supposed to have a total of 38... has developed severe cramping and diarrhea... passed a 1 inch clot yestserday... Has anyone gone through this difficulty and gotten past it?"
Something is not right about the radiation -- could be in the areas of skill or equipment and perhaps the prep. If done well, radiation should not cause such difficulties. I had 20 IMRT for the prostate, with no spacer. And two years later, 30 IMRT for pelvic nodes. All with no discomfort or after effects.
I would agree here. This sounds like the planning resulted in an incorrect map of the OAR “organs at risk”. I would talk to the RO about having a new simulation done to make sure the rectum is out of the field. This looks like radiation proctitis. It’s worth reconfirming the mapping to ensure he’s not getting a damaged rectum.
I'm going to agree with with vintage42, something seems out of whack with the one of three things:
The radiation treatment plan, usually developed using sophisticated 3D software
The planning session, though with my last radiation, SBRT, my radiologist said they no longer needs the tattoos given the sophistication of the delivery systems with real time imaging and subsequent delivery.
The delivery itself.
Given the advances and sophistication in all three areas, experiencing what your husband has should not be.
I've had three rounds of radiation treatment;
SRT in March 2026 39 IMRT 70.2 Gya
WPLN July 17 45 GYa
SBRT April 2024 40 Gya
Zero side effects. That I believe may be testimony to my radiologist and her team, their expertise, training, diligence...and the advances in the planning and delivery systems.
Unfortunately, that doesn't really answer your question, hopefully your radiologist can.
Misoprostal in cocoa butter suppositories 30 minutes before radiation has had mixed results in preventing proctitis. My RO has used steroids.
I have had no personal experience with radiation yet
Edit: Sorry I had to cut my response short.
I did MUCH research to find optimal treatments and to be a good advocate for myself. Yes there are side effects to radiation to be expected. Extreme side effects NEED to be brought up to your provider and addressed. I wish you and your husband well.
My age at the time was: 68 + years old (Fried during Feb. March and April 2005).
Greetings: Radiation - I've posted this before so to those people who have already seen this please forgive me.
I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.
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