looking for other experiences with radiation. My dad just went through -4.5 weeks of radiation. I believe it was standard radiation EBRT or IMRT not sure which.
It was fine at first, no side effects. By week 4 the side effects started - diarrhea, constipation, abdominal discomfort, gas. He is so uncomfortable, he can’t leave the house and is not himself at all. His treatment ended Jan 3 and still happening 2 weeks later. Doctors (both RO and MO) say this is fairly normal and has to get through it with Imodium , plenty of fluid etc. they said sometimes it gets worse before better following treatment. background: PSA 21, Gleason 9 with spread to lymph nodes and small spot on hip bone. They are being aggressive (curative) given more limited spread and so the treatment is aggressive/ radiation to the prostate and the bone. Lupron to take care of LNs (at least that’s the plan) He is also on Lupron, started that right before radiation.
I am wrecked with anxiety and it’s hard to see him like this. I want to scream at the doctor, what else could be wrong? Could it be post radiation colitis,, proctitis, infection ? doc doesn’t seem to check! I have definitely read this is a side effect but want to check with others - did it get worse for you before better following treatment? What should he be asking the doc about other radiation associated conditions? And could there be other treatment? (Other than diet changes and Imodium?!!)
Thank you so much.
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alysona828
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I had moderate diarrhea during RT. It was recommended that I take Citrucel which did help. After about two weeks after the RT ended the diarrhea began to subside.
hi, it does start to subside. My husband experienced the same issue. Eating a bland diet helped including white rice, apple sauce, no spices, no coffee, no dairy until it subsides. If it is really bad, A good strong probiotic like visbiome helped with the gut inflammation from the radiation, and restored the gut flora affected by the radiation. Speak to your doctor about it. You can get visbiome over the counter or with a prescription and will be covered by some insurance.
It is very normal. He should have been warned that it is likely to occur and it will usually go away. He just got a bad "sunburn" on those tissues, so irritation is expected.
thank you all, this is reassuring. He was definitely made aware of the side effects , I just don’t think we expected this intensity and how long it has gone on.
I had 32 radiation treatments and for the last 10 or so I was badly beaten up inside to the point of being hospitalized for 10 days. It was not pleasant as my diarrhea was to the point that I lost 25 lbs and I was only 170 to begin with. As Tall Allen pointed out it was a bad internal sunburn that eventually healed. The interesting thing is that two docs thought that I was to blame. Yup. They thought that the radiation brought forth a latent Crohn’s disease or IBS. Two other docs thought it was just a bad internal ‘sunburn’. The latter two were correct. The other issue I had to face was that a year later I had to have a bladder fulguration because the radiation damaged a few spots in my bladder. After that, all has been well for the past seven years except for the fact that I still have PC and have to be on ADT forever. But hey, I keep waking up each morning. Bonus.
He is definitely losing weight. We were close to taking him to hospital for dehydration. Is that what you were treated for at the hospital? The doctor warned him he’d be in the hospital if he didn’t drink plenty of fluids. I
To answer your question, I was treated for dehydration as I had an IV drip for many days. Bottom line with me is the docs couldn’t really agree as to what was really wrong. I even had a colonoscopy which discovered a blockage in the lower intestine. I was an interesting diet too - red jello for breakfast, yellow jello for lunch and you guessed it, green jello for supper. Not my idea of fun. However, I did recover.
alysona828 said: " ... PSA 21, Gleason 9 with spread to lymph nodes and small spot on hip bone... the treatment is aggressive/ radiation to the prostate and the bone.... -4.5 weeks of radiation. I believe it was standard radiation EBRT or IMRT not sure which... week 4 the side effects started - diarrhea, constipation, abdominal discomfort, gas..."
EBRT is external beam radiation, such as IMRT (intensity modulated) or SBRT (stereotactic body). As opposed to internal radiation which is called brachytherapy (BT) and uses seeds in the prostate. So it appears he got IMRT, at least for the prostate.
SBRT is usually used for spots on the bones; I wonder if he also got that. It is so focal that I don't think it can cause GI issues.
I had 4 weeks IMRT for the prostate, and two years later, 6 weeks IMRT for a pelvic node and the whole pelvis. I was warned of GI issues both times, but actually had none at all. Your husband's symptoms sound like the intestinal tissues were just irritated and should get better in a month or two. They do not sound like proctitis which is rectal damage and bleeds and hurts. (I am no doctor.)
When I went through the 35 treatment RT two other guys began the same treatment on the same day, We were told to stick to a bland diet, low fat, avoid vegetables. Low fiber. Eat cream of rice or cream of wheat cereal. Two of us complied, one did not. Plus he smoked cigarettes, which impairs DNA repair. That guy got so sick with diarrhea he missed several treatments and was miserable. We other two did well. I had one bad day because I decided to eat a cheeseburger. So I think diet matters and avoid tobacco.
I am also G-9 with mets to the lymph nodes. I had 44 treatments IMRT. My reaction was not not as bad as your fathers but I did experience some very unpleasant ones. As to "Not being himself". There are a lot of side effects while we are on ADT, a quick search is an eyeopener of what many of us go through. the best advise is to get into the gym and do as much as possible. Is he also on Zytiga and Prednisone?
This is such a good point. It is hard to tell what is caused by the lupron vs what’s caused by the radiation. I think the issue right now is that he is dealing with the acute side effects of the radiation- extreme GI discomfort and having to go to the bathroom all the time, that he is not really complaining about anything else. He missed the Eagles game for the first time in many years the other night (haha there wasn’t much to miss) because he was just so uncomfortable he went to sleep. He sits on the couch and has to put his legs up so that he is not uncomfortable. Normally he’s up and about. We know the Lupron is powerful and I know for sure it is causing some tiredness and moodiness but the GI issues is the big thing right now
there is a FODMAP app that lets you know what foods cause gas and how much. His long is tender so gas will cause discomfort. This diet really helped me. I have become a golden kiwi fan.
Hi Alyson, I had the same issue during radiation and finally got through it mainly by not eating much at all. It was a constant battle just to get through the treatments. I lost 20+ pounds in those 2 months. Once the treatments were over, I stopped all the over-the-counter meds and went with a high fiber diet (as I would prefer diarrhea over constipation) and lots of fresh probiotics like kiefer, yogurt, and naturally fermented sauerkraut. I mixed brands to get the widest variety of gut bacteria built up. For sauerkraut, I settled on Saverne and/or Silver Floss and added tofurky sausage to make it a bit more palatable and ate it every day along with the various yogurts. After a few weeks my gut returned to a new normal of semi-constipation and I deal with that by taking a stool softener daily and staying away from white flour, cheese, and other types of foods that don't have a lot of fiber. Beans, other legumes, and high fiber grains are helpful to keep me "regular".
My dad suffered that as well. What he did was took ginger teas, used medical marijuana gummies for nausea ( we live in Michigan so legal, and who cares if it's not if it helps with Cancer!), and he ate a bland diet, lots of fluids and drank smoothies with organic Kefir to build up his gut health.
Everybody is different, I know. I am 81 and had 20 IMRT in 2021 and 30 IMRT in 2023, with no discomfort or after effects. And I have been on the ADT Orgovyx for 5 weeks, also with no discomfort or side effects.
Wow, Vintage. I want your genes! My battle is scheduled to start in February, but reading about the side effects of ADT/RT is making me hesitate, again. But I’m reassured by the positive posts I read.
I don't think my good experiences are because of genes. For ADT, it would be because at 81 years, I have already lost most of my testosterone, and because the new Orgovyx is so mild for anyone. For the IMRT, it would be due to the skill of the RO in programming the beam, and in my daily bowel and bladder prep to conform to the program.
My RO has also given me the option of using Orgovyx tablets versus Lupron injections. Not certain if Medicare covers Orgovyx, but that won’t deter my decision. She also wants me to get a spacer installed before starting IMRT/GMRT on the prostate. Not sure what will happen at my lymph nodes. I suppose everything will get blasted in their vicinity. Sitting on the Northshore of Oahu at the moment, pondering the idea having my insides toasted and my testosterone eradicated at a time when I feel so healthy.
Orgovyx is a Tier 4 specialty drug, retails for $3,000/month, but is costing me $75/month. It is not clear if Medicare is paying the difference or if my Medigap is. If you have the option, Orgovyx will be much better.
I did not have SpaceOAR (Spacer for Organs at Risk) with my prostate IMRT. It is proprietary and costs about $2,500 before insurance. My OR's hospital had dropped it in 2021, probably because it carried some risk of complications back then, maybe not now. RO's might like it because their targeting of the prostate has less risk of hurting the rectum. Maybe they can dose the prostate better if they don't have to be so concerned about hurting the rectum that would otherwise be touching it. I had no rectal issues without the gel.
IMRT for the prostate is precise,and, and nothing is blasted unless by design. Two years after prostate IMRT, I had pelvic IMRT specifically designed to hit one cancerous lymph node strongly, and the whole pelvis lightly to knock down undetectable cells in other lymph nodes. That pelvic "blasting" was carefully designed.
Your bio indicated cancer in prostate and some nodes. I would think the nodes should be radiated as well as the prostate. I don't know if IMRT can do all that at once, or if SBRT would do the nodes better.
Radiation is targeted, not "toasting", and your healthy testosterone is what's feeding your prostate cancer.
"... pondering the idea having my insides toasted..."
So HIFU (high intensity focussed ultrasound) is an ablative (destructive) therapy that does use heat. However, radiation works not by heat, but by damaging DNA. This prevents the targeted cells from repairing themselves and they slowly die. The effects of prostate radiation therefore play out slowly.
In the best case, the cancer cells in the prostate die off. In some cases the radiation is not delivered as planned and collaterally irritates the bladder or rectum, causing problems. In other cases, errant radiation damages the DNA of the lining of the bladder, appearing years later as cystitis. With modern radiation I don't think that happens any more.
And in some rare people, the DNA of cells of their prostate cancer is resistant to radiation, and can repair themselves and persist.
I was exactly the same. It was real bad for like 3 months. Then slacked off from there. Hate to tell you but I had issues,not bad, but was not normal for quite a few years. I always had issues with ADT.He's not alone and it's normal. He'll cope in time. This crap isn't a walk in the park.
Hate to ask but.... would you be kind enough to update his HU bio? Age, Location, Medical center(s) Doctor's names and any other info you wish to add. All info is voluntary but helps us help your Dad (and you). Thank you and God Bless. (This is a great site).
If he has chronic diarrhea, make sure his urine pH does not go down. Acidic urine can cause kidney/bladder stones. They are any fun either. Potassium citrate daily can keep the pH normal.
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(haha there wasn’t much to miss) because he was just so uncomfortable he went to sleep. He sits on the couch and has to put his legs up so that he is not uncomfortable. Normally he’s up and about. We know the Lupron is powerful and I know for sure it is causing some tiredness and moodiness but the GI issues is the big thing right now 
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