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Medical Forum / Diseases and Disorders / Prostate Cancer / April 2007Re: Provenge
Does it mean that I won't die as soon as I think I will, or is it just another "Might-be" load of crap? I'm living day to day here and I am trying to be positive, like most of my other PCa brothers. A scared wee laddie trying not to shout too hard at God. My head just about totally f.cked now. Sorry. Mixed messages - one minute I'm happy, the next seems We're ALL f.cked again. Can someone just say what is going on? - From a little cat, wondering why her daddy is sitting on the sofa crying again? IGNORE THIS TOO. RUBBISH On Mar 30, 8:00 pm, "Hugh Kearnley" <hughkearn...@btinternet.com> wrote: ... > Can someone just say what is going on? > - From a little cat, wondering why her daddy is sitting on the sofa crying > again? My man, we've all been delt a poor hand. Now it's up to play it as best we can. Of a small circle of close-ish pals and co-workers. Of about 50, 10 or more are taking blood pressure meds and 4 have had heart attacks. The youngest was a strapping lad of 39. He woke up in an emergency room, they were yelling "get the paddles!" Two others have had bypass surgery. What are their odds of making 10 more years? Better than mine? Maybe. Maybe not. One guy just had some skin cancer cut out. I clocked a BP of 117/74 last visit. My cholesterol was 201. A1c 6.4. I'm 60. My guess is that the prostate cancer will get me only because I have my BP, cholesterol, and sugars under control. The treatment, seeds and IMRT, have taken away the easy, firm erections and intense, wet orgasms. If everything is right I can manage a little better than stuffable without chemical assists but 5 mg of levitra or 20 mg of Vitamin-V helps. Even then, the stiffening is barely adequate and lasts only 4 or 5 minutes. I don't leak pee but man, when I have to go, I HAVE to go. What's weird is that it's gotta be psychological. I can drink 20 ounces of water and sleep through the night. But if I'm working in the garage and get the feeling that I need to pee, the couple minutes to the bathroom seems like forever. The last 10 feet, the pee is busting loose. Sometimes I'm sprinkling as I jerk my zip down. Anyone else have that? A lady pal told me that she does that too. She's elderly, like most of us. She can pee OK but a half hour or hour later, if the thought comes up, "it's time to go again", she has to run for the room and sometimes is sprinkling tinkle as she turns to sit. Maybe the radiation damaged my nerves or pressure sensors. The times that I think that I HAVE to go, it's like, is that all? -kh Hughie, hope you find some levity and perspective. > On Mar 30, 8:00 pm, "Hugh Kearnley" <hughkearn...@btinternet.com> > But if I'm working in the garage and get the feeling that I need to > pee, the couple minutes to the bathroom seems like forever. The last > 10 feet, the pee is busting loose. Sometimes I'm sprinkling as I jerk > my zip down. Anyone else have that? Yep. I think you're right. *Some* of that is psychological. Why else does the old camp trick of putting someone's hand in warm water work? Several years ago, on the BPH forum, someone wrote that even pumping gas into his car when he has to go increases the urge. I find that when I have to go, the more I think about it, the stronger the urge. If I get mentally involved in something else, I can go longer stretches. I've never heard this satisfactorily explained. Didn't your radiation oncologist explain this to you?? Ours did. Ron has the same problem.......when he has to go.....HE HAS TO GO!!! Think of the bladder as a balloon, able to expand bigtime. Radiation takes the elasticity out of it and when it is full, you have to make a dash for the loo. A rather simplistic explanation, but don't know where the booklet is from the radiologist. I can really sympathize.....I am one of those *stress incontinence* women, due to childbirth. Been wearing pads and pantyliners since I was 40. But somehow, the thought of undergoing yet another *minor* surgery is not appealing to me. Still healing from the so-called *simple one* on Jan. 29th. Cheers....Heather > I don't leak pee but man, when I have to go, I HAVE to go. What's > weird is that it's gotta be psychological. I can drink 20 ounces of [quoted text clipped - 14 lines] > > -kh Hughie, hope you find some levity and perspective. > Didn't your radiation oncologist explain this to you?? Ours did. Ron > has the same problem.......when he has to go.....HE HAS TO GO!!! [quoted text clipped - 11 lines] > is not appealing to me. Still healing from the so-called *simple one* > on Jan. 29th. That makes sense except in my case, I can drink 20 ounces of water at 10:00PM, then sleep through the night. At 6:00 AM, when I go, I''ll pee out a full load. I've never measured it but it could be a quart or more. I haven't found any pattern to it during the day. Sometimes it's hours before I feel the urge. I'll pee out what seems like a quart. Sometimes I really feel the urge but it's only a few ounces. I'm sure I'm emptying out each time. Claude might have hit it, that it's psychological. It might be that the radiation affected the sensors and wiring. While my "equipment" works, it doesn't work as gracefully as it used to. I don't get all the signals and maybe, as Claude said, my head, my imagination, fills things in. It's like that with erections and orgasms. If I think REALLY hard about a certain blonde, recall and engage in certain activities, I get a useable erection and 4 or 5 minutes later, an almost good orgasm. Mostly though, things are floppy and require chemical assists. I hoping that it's a matter of relearning and that things will improve. To that end, I keep drinking lots of water and tea and keep working on the other activities. -kh Not doing all that badly. >> Didn't your radiation oncologist explain this to you?? Ours did. >> Ron [quoted text clipped - 12 lines] > pee out a full load. I've never measured it but it could be a quart or > more. I do fine at night, but I know if I have a full bladder, once I get up and try to make it 10 feet to the bathroom, gravity hits and I am mopping up after 5 feet. (G) Reminds me of when I was 8 months pregnant....and that is one hell of a long time ago!! > I haven't found any pattern to it during the day. Sometimes it's > hours before I feel the urge. I'll pee out what seems like a quart. > Sometimes I really feel the urge but it's only a few ounces. I'm > sure I'm emptying out each time. If you are sitting down to go, try leaning forward as far as you can.....that should get rid of the remaining ounces. Think of it as *wringing out your bladder* (G). > Claude might have hit it, that it's psychological. Could be.....I queried Ron and he says it doesn't happen like that all the time.....just when he is out in the garage working on his sports car, for instance, and puts off coming inside to hit the washroom. I guess there is sort of an *expansion limit* that you guys hit. > It's like that with erections and orgasms. What are those? ROFL.....sorry, couldn't resist. > -kh Not doing all that badly. Glad to hear that.......Heather and Ron > If you are sitting down to go, try leaning forward as far as you > can.....that should get rid of the remaining ounces. Think of it as > *wringing out your bladder* (G). I'll try it but I'm pretty sure that I'm empty after I go. > Could be.....I queried Ron and he says it doesn't happen like that all > the time.....just when he is out in the garage working on his sports > car, for instance, and puts off coming inside to hit the washroom. I > guess there is sort of an *expansion limit* that you guys hit. It's the GARAGE!!!!! > > It's like that with erections and orgasms. > > What are those? ROFL.....sorry, couldn't resist. That's just the other function of the plumbing. Both functions are OK but act screwy at time. Erections, like controlling the pee-flow, used to be, er, well regulated. I could go for 20 minutes in a smooth rhythm. Now, it's out of control. If it's not going soft, it's orgasming after a few minutes. But it's not a roaring orgasm, its more like, wha, wha, did something just happen? Every now and then, it's maybe once a month, it's "not bad", almost like old times. -kh well, maybe it's once every two months. >> Could be.....I queried Ron and he says it doesn't happen like that >> all [quoted text clipped - 3 lines] > > It's the GARAGE!!!!! Dammit!! Never thought of that!! You two should install a toilet in the garage and your problems are solved!! (VBG) Heather > >> Could be.....I queried Ron and he says it doesn't happen like that > >> all [quoted text clipped - 6 lines] > Dammit!! Never thought of that!! You two should install a toilet in > the garage and your problems are solved!! (VBG) Like I told I.P. I have pee'd out the garage door, hoping, hoping that no neighbors were looking out their windows. I also used the laundry basin once because, it felt like I would not make up the 2 flights of stairs to the bathroom. The laundry basin is too high for me except on tippy-toes and flippin- the-tip over the lip, so to speak. I think what happens is that guys LOVE their garages, it's all the tools, the scrap metal, the sagging boxes of junk, the jars of nuts and bolts. When we're down there, we lose track of time. Especially if a power tool is involved. The "time-to-pee" signal is below the threshold until it's way too late. And, this is considered a "good outcome". -kh >That makes sense except in my case, I can drink 20 ounces of water at >10:00PM, then sleep through the night. At 6:00 AM, when I go, I''ll >pee out a full load. I've never measured it but it could be a quart or >more. Nearly a litre! - that's very impressive. Even as a stripling I needed to void more frequently than your average but as the prostate squeezed ever more tightly I was having to go on no more than 100mls just prior to surgery. Now (I do measure this when I feel I've got a biggy coming up) I can get to 400mls but I'm VERY needy at that point. My uro told me that most would choose to void (no urgency) around 200-250 and that 500-600 was possible but usually only pain-free under anesthesia, so you're way up there with the record-breakers.. >> That makes sense except in my case, I can drink 20 ounces of water at >> 10:00PM, then sleep through the night. At 6:00 AM, when I go, I''ll [quoted text clipped - 9 lines] > 200-250 and that 500-600 was possible but usually only pain-free under > anesthesia, so you're way up there with the record-breakers.. I've told recovery ward and ER nurses on several occasions that I had to pee really, really, really badly NOW, as I was in pain, but their only answer was always, "Bull. You're catheterized. Your bladder is empty." If it didn't hurt so much, it would have been fun to watch their expressions when I managed to manipulate the catheter internally and flood my bag with 600-800 cc. These people need to learn to listen to their patients. I.P. > Didn't your radiation oncologist explain this to you?? Ours did. Ron > has the same problem.......when he has to go.....HE HAS TO GO!!! [quoted text clipped - 5 lines] > A rather simplistic explanation, but don't know where the booklet is > from the radiologist. I think there's a psychological aspect to it, too. I had surgery, but have the same problem; when I have to go, it's must be now. --charlie > if I'm working in the garage and get the feeling that I need to > pee, the couple minutes to the bathroom seems like forever. Laundry soap jug. Convenient, quick, wide-mouthed, can't miss, seals tightly, brightly colored so it's easy to find . . . far simpler and cleaner and closer than using those stupid archaic fixtures in most bathrooms, especially in our situation. I.P. > Laundry soap jug. > > Convenient, quick, wide-mouthed, can't miss, seals tightly, brightly > colored so it's easy to find . . . far simpler and cleaner and closer > than using those stupid archaic fixtures in most bathrooms, especially > in our situation. OK, I'll admit that once I did use the laundry basin. I'm short so I had to tiptoe. Another time, and this was during the day on a weekend, I did pee in my yard, no way I was going to make it up two flights of stairs and through the house. I'm pretty sure that no one saw me. "Look at what he's doing NOW!" -kh just telling it like it is. I'm considered perfectly continent post-treatment but, man, have I had some accidents and close calls. |
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