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Compiler's SRT Adventure

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Posted 3/29/2011 12:29 PM (GMT -5)
I expect to see the doctor today. Symptoms have once again resolved about 90%, but I was miserable from 4:10 PM (10 minutes after the session completed) until I fell asleep at 1:00 AM (although better after 10:00 PM).

I don't have a good feeling about what is going on!

Mel

Posted 3/29/2011 1:23 PM (GMT -5)
Will be looking for your report
Posted 3/29/2011 9:56 PM (GMT -5)

OK, its been a busy day but I finally have some time to post this update. It was an interesting day.

First of all, I tried something different. Previously, I drank quite a bit of water beforehand, but they are so efficient that when I get to the hospital I am finishing my water and then I am on the table within 10 minutes. This time I finished the water earlier. I know David had mentioned the fact that he was radiated but never was told to drink water. At my place, they generally ask me if I drank my water. So, my thinking is that maybe all that water I was drinking was not yet in my bladder. Now, their instructions are to drink to the point where if I was driving I might be looking for a bathroom. Generally, I did feel that way, but still maybe there wasn’t yet enough water in my bladder. Okay, back to that later.

So, I drank the water a bit earlier but when I got there the doctor was ready to see me (I had told them yesterday that I absolutely need to see the doctor today). We chatted for maybe 25-30 minutes. The bottom line: he said this situation is very unusual and he doesn’t know why this is happening or what to do about it. He said my tissues obviously are having difficulty with the radiation. He pulled out my file and showed me some interesting computer printouts from his plan. It shows that my prostate bed is getting the vast majority of the radiation and other tissues are getting much less. Basically it went from 90% to 10%. It was fascinating. For example, my rectum is getting 10% but the 90% misses the rectum by 1 mm. Anyway, where my pain is includes the prostate bed, so it is certainly getting plenty of radiation. He again reiterated that this is very unusual. The only thing I can do is stop the SRT. I asked him if he can change the plan to miss where it hurts. But he said to miss that area would result in missing part of the prostate bed. That would be totally counterproductive to the purpose of the SRT. He said I should decide very quickly what I want to do because to continue and then stop would not be smart as I would be subject to all the SE of the SRT (immediate and/or delayed) but none of the benefits. I asked him if he would consult with his partner (another well-regarded very experienced radiologist). He said he would ASAP. I did mention I might be willing to continue the torture with the hope of a cure but am I going to destroy my bladder or whatever in the process or will the problems resolve after the SRT. He flat out said he didn’t know because this is so unusual. He did say the very nature of radiation destroys cells. Again, the ball is in my court to decide what I want to do. My thinking is that if I stop now I am giving up any chance of a cure and it’s on to HT with it’s own set of side effects. So, we agreed I would continue for today and probably this week.

So, I then had the tx. today. The doctor saw me immediately after the tx. and said he just had a meeting with his partner. His partner also agreed that the plan was correct and didn't have anything else to add.

Well, since I was changing the water time (and it really got changed because I met with him for 20-25 minutes) I would also go right to the gym afterwards to take my mind off the inevitable pain that seems to now follow my treatment. Well, at least this time I didn't’notice any pain right away. I went to the gym and worked out. No pain, but that often happens due to the endorphins produced. So, it might take an hour. Incidentally, I also had a bm an hour before the tx. so at least I also had an empty rectum. I might add that they don’t mention that at all here. The mantra is to drink water.

Surprisingly, today was no problem. The pain did not recur. Tomorrow, I will try and drink the water more in advance of the tx. and see if that helps. Other than that, I cannot explain what’s going on. I really want to stick with the SRT. But it’s one thing saying it now when I feel fine, compared to being in significant pain.

So, #6 down; 32 to go. I hope future posts are "uneventful."

If any of you have further thoughts/suggestion please feel free to comment.

Mel
Posted 3/29/2011 10:10 PM (GMT -5)
Mel,

Good report. At least the doctor had the sense to say he didn't know, and that it was unusual, and it is. Another simpler possibility, is that your body is reacting in a short term negative way to the radiation, and it will take x amount of treatments for it to settle down. I assure you, if it does get worse or increases over time, you will be the first to know. Also, its good that this meeting is in the record book and document in case something comes up.

I wasn't told not to drink water, my doctor simply said that with the indwelling catheter, it wasn't needed and to quote her, "I got that covered".

Sounds like you are drinking plenty of water, the exact timing of how long it takes to filter from the kidneys to the bladder is not an exact science, but it generally happens pretty fast for most people.

I think you did the right step with the talk. And, even though my personal experience was a total disaster for different reasons and circumstances, I don't feel that you should stop treatment at this point. As you well know, the SRT is your last curative card, and if you were to abort the treatment now, you couldn't do it later if you changed your mind, and even with the few treatments that you have received, you still may have to live with side effects from it anyhow.

Now, if the pains return on a regular and/or increasing basis, I would definitely re-evaluate the situation.

Good luck, still concerned deeply, hope it is just an adjustment phase as I suggested.

David
Posted 3/29/2011 10:20 PM (GMT -5)
David:

I wish more doctors would admit they don't know.

I sure hope things stay calm with the treatments. It is nerve-wracking. I remember you agonizing over whether to even go to your treatments. I can see myself in that spot very easily.

Mel

Posted 3/29/2011 10:45 PM (GMT -5)
Understood

When I went through the neck/throat radiation in 2000, it was very brutal and the ongoing side effects were horrific at best. My wife, even as a nurse, begged me several times to quit the treatments at the time, as she saw with her own eyes what was happening to me physically. But with the ultra rare cancer I was fighting at the time, the radiation was the only possible hope in stopping it, so I soldiered on. I was also 11 years younger and healthier when I started that, but still, you have to do what you know you need to do.

David
Posted 3/30/2011 8:04 AM (GMT -5)
Mel,

If you look back at my "journey" posts, you'll see that I had to work on the timing.

The standard RULE (in writing, verified daily by the techs) for my place is 500ml completely consumed at least 45 minutes before treatment. But as you'll see, I had brutal floods - a couple of trips to the detail shop to shampoo the car seats. Good thing they aren't heated.

The objective was to be running, not walking, to the toilet after I got off the table. It took a couple of days to time it down to 35, not 45 minutes, and I had to change my trip so that I was waiting in the clinic for a few minutes, not trying to be walking in the door at the last minute.

By the end of the second week, we had it down.

Posted 3/30/2011 9:52 AM (GMT -5)
I42:

Very interesting. My bottled water is 16.9 fl. oz. I just checked and that is exactly 500 ml.

Yesterday, due to my meeting with the doctor, it probably was 30 minutes before I got on the table (after finishing the water).

They always emphasized drinking the water, but never specified to finish the water at any one time. So, maybe finishing the water just before getting on the table was not good enough.

My fingers are crossed that this was the problem. I guess I'll know soon enough.

Mel

Posted 3/30/2011 10:20 AM (GMT -5)
Mel, don't forget, there were 2 components of the routine that changed. That bowel movement should be considered also. There's a possibility, even probability, that having an empty bowel, along with a full bladder presented an entirely new field for the radiation. I would consider the water about 45 minutes before and try, even if by suppositories or fiber or prunes or something to lie down on the table with an empty bowel. I'm just sayin'........... :-)
Posted 3/30/2011 10:59 AM (GMT -5)
James:

My bowels just don't work that way, sadly. But I definitely do consider that as another factor.

Mel

Posted 3/30/2011 1:31 PM (GMT -5)
Mel,

I agree with what Purg and the others have said.  I had experienced a few "zaps" or pain when the gantry was down to my far left.  With a little pain for the next hour or two.  I have been trying to have my water finished 45 minutes before treatment.  Usually I do not have to run to the br., but I don't want to stop and talk either.  If your issue has improved with the water consumption time table then it is worth continuing to see what happens.  I am finally down to single digit treatments, only nine left.  Hang in there, the further a long you are, the faster it goes.

Mr. Bill

Posted 3/30/2011 2:19 PM (GMT -5)
Mel,

It isn't really related originally to PCa, but due to colon issues in the past, I have been on a "less aggressive" stool softener for years. Taken late every night, it has me so regulated you can bet money on the number of minutes after I get up in the morning. Mine is Docusate Calcium 240mg - 1 cap nightly (sold as "Rugby" and under Walgreens and CVS house brands). It was strongly suggested "for life" by my colo-rectal guy to help with post-surgical problems.

That kept me "regular" until the side effects set in after a couple of weeks, which guaranteed I was empty every day.

Almost overflowing bladder and empty bowel was the objective for each day, so the water has to have time to work its way through the system. They had me do some "trials" - take a few hours in the afternoon. Pee as needed, drink nothing. Get "dry". Then drink the 500ml in a 5-10 minute period. See how long it takes you to be desperate to pee. For most folks it is about an hour according to them (therefore the 45 minutes - allows time to flow through + session time). My bladder is about the size of my ex-prostate, so time was shorter.

 

Posted 3/30/2011 7:42 PM (GMT -5)
OK -- Treatment # 7 today.

(Unfortunately, nothing close to a bm today. I admire you guys that are so regular. I am not constipated right now, but let's just say my rectum can get full for awhile! ).

Anyway, I did drink the water earlier than usual. When I arrived, the doctor wanted to see me first. I think he was VERY surprised when I told him that I had no problems after yesterday's treatment. He again reminded me that if I wanted to quit SRT I should do it no later than this week. Frankly, I have thought about it, but quitting SRT is akin to going to that incurable stage. I want to stick with it. Of course, that's easier to say when you are not miserable. I also asked him about my theory that the timing of my water intake made the difference. He honestly doesn't think so.

It was nice of him to check with me. He is a nice guy but I also think he is trying to cover his behind. There is no reason for that in my case, but it's just a feeling I'm getting. I suspect these guys are very gun shy.

So, about today's treatment. It went okay. There was some pain/discomfort but nothing approaching the previous misery. In fact, when it started (about 5 minutes after the tx.) my heart really sank. It was that "oh, no" feeling. But it never got worse. Incidentally, the timing, thanks to my meeting with the doctor, was very similar to yesterday's timing. I also went right to the gym immediately after the tx., just as I did yesterday. Fear is a wonderful motivator; I might be spending 5 days a week in the gym (I just did the treadmill this time; no weights)!

Hopefully, no more surprises.

Incidentally, I think I've spotted another aggravating factor. Part of the instructions is not to take hot showers and not to use a heating pad on the area. But I've been on my computer (laptop) a LOT of late. I sit up in bed with the computer on my lap. It gets hot and I think makes things worse. I've taken steps to rectify that situation!

Mel

Mel

Posted 3/30/2011 9:14 PM (GMT -5)
I was told not to take hot baths or use the hot tub, but couldnt anyway with a suprapubic cath in place.
Posted 3/31/2011 12:21 PM (GMT -5)
Since the water intake is WORKING, concentrate on making it work better..More water earlier can not hurt a thing..

And you CAN train yourself to have a BM at the desired time and I think it's worth the effort..

Once, during my treatment, after the CAT scan pass, the techs came back in and asked if I had to pass some gas..I got off the table, into the John, had a big fart and a small BM then we started over..No problem on the second pass..So they CAN see what is going on, that CAT scan pass does serve a purpose..After that, I made a point of having an empty bowel before I got on the table..Having a full bladder is probably just as important...It can be difficult attaining both conditions!
Posted 3/31/2011 1:54 PM (GMT -5)
Unfortunately, I CANNOT train my bowels to go like clockwork. But so far All-Bran and stool softeners are working for now. (For me nothing works consistently. Also, I may get a streak where I am reasonably regular for months. Wish that would happen now.).

Had a decent bm an hour ago and am drinking water as I write this. Keeping my fingers crossed.

Next hour it will be radiation and then to the gym!

Mel

Posted 3/31/2011 2:07 PM (GMT -5)
I have mentioned this before -regarding constipation - 1/2 glass of milk mixed with 1/2 glass of prune juice - microwave 30-60 seconds (warm but not too hot) and drink it all down ... in 20 minutes you have a good emptying b.m.

Wishing you all the best on this part of your journey,Mel.

gentle hugs,
BRONSON
Posted 3/31/2011 2:58 PM (GMT -5)
Fairwind, train your ass for BM's? Lol. You must not know my ass very well, it has a mind of its own, and when its say go, I jump and go.

David
Posted 3/31/2011 3:20 PM (GMT -5)
Bronson, after you drink that milk/prune juice concoction, who cleans up the barf?  Yuk!

No hugs today :)

Bill

Posted 3/31/2011 3:43 PM (GMT -5)
Bill -
- actually it tastes very nice - and (back then in 1998 in hospital rehab - post leg surgery and no b.m. for 7 days) when you have a very tall and large Jamaican nurse, named Periwinkle, tell you it works - you do what you are told and it does work ....
smilewinkgrin

hugs brought to you by the Prunes Marketing Board,
BRONSON
Posted 3/31/2011 3:45 PM (GMT -5)
Got Milk??..............and TP??
Posted 3/31/2011 6:34 PM (GMT -5)
DAY 8

UNEVENTFUL!!!

I have to admit that things are so bad that UNEVENTFUL is great news.

Did the water early and more of it (about 700 ml this time). Had a bm (that's a matter of luck in my case -- Bronson, I have tried all of the nostrums and I do like prunes, but none of them work for me consistently) too.

As I said, my RO could not explain the pains I was having and he did NOT think it had anything to do with the water (or timing thereof). I submit he was wrong (I assume he would not think that a full or empty rectum matters with these specific symptoms). Anyway, I guess I'll see him Monday or Tuesday for my weekly meeting and we will see where things are at that time. At least this gives me some hope of getting through the SRT, although the SE are not supposed to hit until later (in 1-2 weeks).

Mel

Posted 3/31/2011 7:44 PM (GMT -5)
Mel,

Glad to see you are making it through the obstacle course.

Continued health and minimal side effects.

Goodlife
Posted 3/31/2011 7:53 PM (GMT -5)
Your lack of bad news is good news. Good going.

David
Posted 3/31/2011 8:20 PM (GMT -5)
My instructions were very clear...full bladder and empty bowel.

I am very regular BM each morning. During the radiation I started going two or three times a day with greater urgency that I could not ignore. I did not change my diet and ate at least two leafy salads a day.

On one radiation ocassion I knew I needed to have a bowel movement, but did not. It definately felt different during and after the radiation....but not pain. From that point on I made certain to have the empty bowel.

Another way to improve bowel movements is to drink a lot more water throughout the day and eliminate dairy. Also drink greeen tea....3-5 mugs a day. It does wonders.
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