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ADT and SRT Journey Part 5

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Posted 10/26/2018 7:18 AM (GMT -5)
I know it's been mentioned before but exercise is one of the hardest things to do when you feel exhausted all the time. I finished RT about 3 weeks ago and I'm a little past half way in the Lupron shot and this week I feel like I've hit a wall. I'm really hoping it is the Lupron and not the new normal. I try to walk as much as I can everyday and I have some dumbbells,(weights not people) I try to work out with every morning but it is hard.Getting up 2-3 times a night doesn't help either. Old age and PCa is not for wimps. I miss the RT, at least I could get a 15 minute nap every afternoon.
This looks like a good article. I'll read it when I wake up.
Posted 10/26/2018 7:42 AM (GMT -5)
P34, the fatigue you're experiencing seems about right on time for Lupron's effects. Around 3 months after the shot is when I recall the fatigue becoming a real problem. Exercise does help, even though it's the hardest thing to do. Naps helped too. However, with all of that, relentless fatigue was the worst side effect of ADT as far as daily living goes. You're on a fairly short course of it, if I understand correctly, and it should get much better for you after the ADT "releases" and your testosterone recovers.

My heart goes out to the PCa brothers that are on permanent ADT. If mine recurs, that's going to be my future too and I'm not excited about it!
Posted 10/26/2018 8:08 AM (GMT -5)
Thnx Redwing I couldn't get it to highlight must be doing something not right. And thnx to Prato for finding the link! I have been researching and looking at different exercises that support this article Would be fantastic to come up with a exercise routine that would be mainly geared for prostate cancer. I was thinking if we were all over in Saipan's area right now we could be getting lots of different exercises helping to clean up from that terrible storm! Wishing him the best in his recovery!!

Larry
Posted 10/26/2018 8:16 AM (GMT -5)
Well, 5 weeks down, 3 to go.

No big issues so far. Not even fatigue other than what one gets from getting up super early each morning. But I’ve adjusted to that ok, by dozing off to sleep around 9:30.

One problem I have...I do a good bowel movement every day at 5:30 am, before I leave the house. The last two days, I’ve felt cleaned out, I get to the hospital, fill my bladder, and just before they call me in I feel like I have gas, or something. I manage to have another small BM, without letting out much water from my bladder.

Then immediately after my treatment I go to the bathroom, and have another BM. Not like the first one of the day, but still significant.
This is just the last two days. I have to do something with my diet but not sure what. The technician said. Eat only cooked vegetables, not raw, and no wheat or rye bread only white, or plain bagels

Anybody deal with this? I’m afraid if it continues I’ll end up with damage. They only do a ct Scan once a week, the other days they can’t see it
Posted 10/26/2018 9:01 AM (GMT -5)
Hey Pratoman, I actually became more regular during my RT. Before I started I was pretty constipated and I didn't know how I was going to clear things up everyday. My appointments were around 2 pm so I was able to go home from work and take care of business before going in. After about the first week or two things became pretty regular.The center was only a 10 minute drive from home so it all worked out ok. Now that I've finished the RT I'm back to being constipated. The constipation seemed to correlate to the RRP. I never had this problem prior to surgery. I did change up my diet to more high fiber foods the first couple weeks but then I had to back off that. One thing I've noticed for abut the past 10 days is my urine stream is really weak. I get the impression some of the folks at work think I have a relationship with the urinal now. I always heard anything more than a couple minutes in front of the urinal was suspect smile
Posted 10/26/2018 9:06 AM (GMT -5)

Pratoman said...
... Then immediately after my treatment I go to the bathroom, and have another BM... I have to do something with my diet but not sure what. The technician said. Eat only cooked vegetables, not raw, and no wheat or rye bread only white... Anybody deal with this? I’m afraid if it continues I’ll end up with damage.


I know the dietary restrictions seem counter intuitive. What you're experiencing sounds typical for dealing with pelvic radiation syndrome. I had to cut out most fruits and veggies, onions, even mushrooms. A year later and still having some problems, especially with the onions and so have to limit how much and how often.

Starting the second week and continuing thereafter, I never can be sure what the day will be like... Lots of gas, frequent "lose bowel" or even diarrhea. Bananas okay but fresh berries will still lead to a 4 BM day. Same for beans and corn. Whole wheat is a no-no. No fatty meats (bye bye ribs). The occasional steak is okay fortunately. I eat lots of rice and chicken breast now. Dairy is okay (somehow), and I try to remember to have yogurt several times a week.

My gastro told me last spring that this will go away eventually, but I guess eventually can be a very long time.
Posted 10/26/2018 11:57 AM (GMT -5)
Prato still dealing with it 10 months later. The only good thing is I'm pretty regular now 3 to 4 times a day where as before radiation I would be constipated sometimes for 3 to 4 days so I guess that's a good thing!

Larry
Posted 10/26/2018 12:40 PM (GMT -5)
I’m more regular, because I’m taking Metamucil 2x a day and colace 2 x a day. But that’s not the point. The point is, each of the last two mornings, I do my business, feel like it’s complete, but then do ore business immediately after treatment is done. So my system is not clear, like it’s supposed to be, and I’m concerned that could result in permanent damage if it continues.
Posted 10/26/2018 7:09 PM (GMT -5)
Went to my six month check up today. PSA still zero. Next appointment is in December with another doc at Emory to discuss an artificial urinary sphincter. I think the surgery and RT really did a number on me and it just doesn't seem to get better. I was getting depressed about that. Up to 7 pads a day and some leak thru.
Bowels have been fine the whole time. Sure hope you guys with that issue get better soon. I do take a good probiotic every morning.
Posted 10/26/2018 7:13 PM (GMT -5)
Noggin... Good news on your psa! wishing you the best on your upcoming appt.

Larry
Posted 10/26/2018 7:14 PM (GMT -5)
Good news on the PSA.

Sorry that you have to go for the AUS. Few guys here have it.

Andrew
Posted 10/27/2018 8:15 AM (GMT -5)
Noggin - Sorry you have to join the AUS club. I hope it works out well for you. It looks like it's been nearly two years since your RT so I think you hit the nail on the head... if it isn't healed by now it likely won't be anytime soon.

No doubt you had an aggressive tumor at the base of your prostate, as indicated by your B-neck involvement. Unfortunately that also put you in the "false negative biopsy" club too. My current Uro tells me that it is nearly impossible to find such tumors on a standard biopsy. Rotten luck for us both. Hopefully you won't be joining the depression club too.

I've established an AUS support group on FB, but so far the membership is still just one. New members get the privilege of learning my real last name. BTW very few acquaintances know my real first name. ;)

I had hoped FB might be a platform to share all the research I had done before my implant procedure, and maybe learn of a few other guys' experiences. The low turnout is probably indicative of the fact that most guys are pleased with their device and their implant procedure. It's not easy to get men to come out of the woodwork. Most of the closed groups to which I belong are 90% women, and I may eventually drop out.

Good luck with the implant... it is indeed a life changer.
Posted 10/27/2018 8:36 AM (GMT -5)

Pratoman said...
I’m more regular, because I’m taking Metamucil 2x a day and colace 2 x a day. But that’s not the point. The point is, each of the last two mornings, I do my business, feel like it’s complete, but then do ore business immediately after treatment is done. So my system is not clear, like it’s supposed to be, and I’m concerned that could result in permanent damage if it continues.


Prato, you did mention that in your previous post, and is a valid concern. But unfortunately it happens. I don't always want to point out the downside, but it is a cost that a few have incurred as a result of treatment. By the end of RT I was even bleeding anally, and myself and a few other guys I've read here and elsewhere have also had similar (or even worse) experiences from radiation. Even my gastroenterologist told me that his father had experienced that in the last few weeks of his treatment.

Unfortunately for some there are indeed possible side effects from radiation. It is not often mentioned on this message board in particular. Other groups to which I belong have members who are still on tube feed a year after RT for their H&N cancer, because the radiation damaged their esophagus. Their doctors seem unconcerned, as it is so common for that type of cancer. And so it is with colitis and proctitis resulting from RT for PCa. The after effects are grouped in with similar damage resulting from treatment for other pelvic cancers and is known as pelvic radiation disease.

Many of those who experienced PRD say it gradually cleared up, but others have just had to adapt to it. Hopefully yours does not progress. You have identified it early on and have taken measures to counteract what may in fact be inevitable. Let's hope it eventually works out well for you. Need I say that it is in your nature to be concerned. Some may even call it worry.
Posted 10/27/2018 9:22 AM (GMT -5)
Rob... I personally believe as I tell all the new people looking at PCA, ADT, SRT, make sure you get a good a very good team in place and the best medical facility that you possibly can cause you kinda only get one chance at this game and you want the best outcome! Sometimes there are little hiccups that you can't avoid but it's like taking your airplane to a good mechanic versus just the guy in the back forty!! Reading through some of the threads lately just reinforces my opinion. I think money comes into play a lot of times versus patient well being it's sad to say that but saw proof of that this week when my wife went to her doctor appt. Wishing everyone a great weekend Hope that things are going as good as possible for Saipan!!!

Larry
Posted 10/27/2018 11:26 AM (GMT -5)
Rob, thanks for the comments. So far it’s only happened twice, so I don’t think it’s enough to cause a problem , or at least that’s what I’m told.
I’m not really sure what to think about it. But I’m going to try eating less at night (I’ve already cut down), and upping the Metamucil and colace to 3 x a day.

I’ve only got 3 weeks left so hopefully it won’t happen many more times.
So far I have no SE’s from the radiation.
Posted 10/27/2018 11:42 AM (GMT -5)

RobLee said...


Unfortunately for some there are indeed possible side effects from radiation. It is not often mentioned on this message board in particular......And so it is with colitis and proctitis resulting from RT for PCa. The after effects are grouped in with similar damage resulting from treatment for other pelvic cancers and is known as pelvic radiation disease.

Many of those who experienced PRD say it gradually cleared up, but others have just had to adapt to it.

+1

Since I'm feeling the effects of radiation proctitis, which didn't start until 3+ months after RT, I've done some research which indicates this delayed onset is quite common. Good luck finding an RO, URO or even GI physician who really knows (or cares) much about it. Hoping for it to gradually improve, while adapting to it, is about all that can be done.
Posted 10/27/2018 3:01 PM (GMT -5)
For me radiation proctitis didn't really start until about a year later. My GI did a colonoscopy and a little laser treatment, but most both he and PCP just said that I'd have to learn to manage the problem as there wasn't anything else they could do.
Posted 10/28/2018 3:36 AM (GMT -5)
mmmmmm The joys of radiation hey? Welcome to the new normal. Hey at least I'm not constipated anymore! LOL


Larry
Posted 10/28/2018 7:36 AM (GMT -5)
Guess I’m not gonna be in the clear for a looong time
Posted 10/28/2018 8:12 AM (GMT -5)
This has been said before, but no treatment for prostate cancer will improve your quality of life. It's all varying levels of degradation, sorry to say. You select treatments to mitigate risk of the primary problem, PCa itself, but they all come with a constellation of side effect risks. Unfortunately, radiation does have some significant risks too. It's more or less a matter of what you can better cope with.

This thread is about SRT, and mine was primary. But this concern obviously applies to both. While on radiation I avoided many things, caffeine, carbonation, raw vegetables, any kind of beans, salads in general. Friday afternoon was the best - we'd hit a Mexican restaurant and I'd go nuts with most of the Bad Things, bean dip, salads, beer. But by Saturday night, it was back on the wagon. My system ran fairly predictably on a 24 hour cycle, so it was reasonably easy to manage that way.

For what it's worth, here's a 2015 article talking about all sorts of radiation "proctopathy", an interesting word. It talks about some of the things that can be done to help, too. It's very in-depth, very detailed, the most info about this that I've ever seen in one place.

Radiation Proctopathy

The article's abstract:
Radiation therapy is a widely utilized treatment modality for pelvic malignancies, including prostate cancer, rectal cancer, and cervical cancer. Given its fixed position in the pelvis, the rectum is at a high risk for injury secondary to ionizing radiation. Despite advances made in radiation science, up to 75% of the patients will suffer from acute radiation proctitis and up to 20% may experience chronic symptoms. Symptoms can be variable and include diarrhea, bleeding, incontinence, and fistulization. A multitude of treatment options exist. This article summarizes the latest knowledge relating to radiation proctopathy focusing on the vast array of treatment options.
Posted 10/28/2018 9:49 AM (GMT -5)
Radiation treatment: The gift that keeps on giving.
Posted 10/30/2018 9:32 AM (GMT -5)
Good Morning Everyone! Just wanted to let you know I got another <0.10ng/ml yesterday and another 6 month Lupron shot. So it was a good day talked about my joint pain and hot flashes and of course they always ask about urinary and bowel issues recommend a supplement to try for hot flashes seems to be helping some guys.

Larry
Posted 10/30/2018 11:05 AM (GMT -5)
YAY!!! good news on the PSA.
Posted 10/30/2018 11:42 AM (GMT -5)
Good news...that Lupron is doing it's job!
Posted 10/30/2018 2:09 PM (GMT -5)
Good on ya Larry. Any undetectable PSA is a good PSA .
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