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Medical Forum / Diseases and Disorders / Prostate Cancer / April 2007PSA rising faster than my PP
One year and 10 months after prostrate removal I decided to bite the bullet and see my uro. about my lack of erections. In the process, I found out my PSA jumped from 0 a month ago to .4 then today 0.7 Now he's rushing me into setting up for radiation. One of the selling points to me for having a RP over the radiation was that radiation was there to fall back on, but on the other hand, you couldn't have surgery following radiation. Sounded good at the time, but I never thought I'd be there! I would appreciate hearing from anyone who has "been there done that". thanks Mike > One year and 10 months after prostrate removal I decided to bite the bullet > and see my uro. about my lack of erections. In the process, I found out my [quoted text clipped - 5 lines] > from anyone who has "been there done that". thanks > Mike Sorry to hear that Mike. I am really, really sorry. I'm there with you. I went rad 28 months ago and I'm got a rapidly rising PSA too. For me, each month, the PSA gets worse. Going rad, I ducked most of the side effects. I have decent erections on 10 mg of chemicals, Levitra works a little better than Vitamin-V. Orgasms are OK, libido is off but age may be part of it. I don't get up at night to pee but during the day, when I gotta go, I REALLY gotta go. I've been knocking around salvage treatment with the docs but I think I'll pass. He's suggested cryo, surgery-after-rad (it can be done), hormone-chemo. Any of those will effectively end sex in my life. Pre-treatment, sex wasn't that important but it was like something I could do anytime, as long as I wanted, whenever. Now it's barely an option. The treatment has lowered my libido to the point that the physical urges are gone. Psychologically, the desires are still there but I don't get the feeling of needing physical sex. I might go intermittent hormone-chemo but wonder how others have done on it. -kh Too many options but no good ones. Thanks for the comeback. My wife and I were both low on libido going into this, but after 2 years of abstinance she kids around that she wants to be there with me when they show me how to do the injections. She said if it works, she's gonna hop up on the table. For me, the lack of libido makes me reluctant to inject or pump. Especially if it costs 17 dollars per injection or 200 for the epuipment. I could go to ACE and build my own erector set. (get it)?? I still masterbate a lot with and without viagra because I read that using it increases the chance of usage. Like exercising a muscle. Dry ejac. is a drag but thank God the orgastic feeling is still around. Otherwise I wouldn't even bother excercising. I'm wondering my odds now that cancer has returned without a prostate. Seems like if my PSA is .7 that is still hecka lower than it was preop. and not much there for radiation to blow away. But I don't know the mechanics of it all. Going to have to study up again with my text books. Walsh and "for Dummies" I don't know your age, but at 56 if I were you I would gladly forgo sex and opt for surgery. Then I would watch the PSA and hit it with chemo if needed. Seems to me that every thing you can do to slap that bad boy down and prolong your life. I keep thinking of my 79 year old cantankerous f.ck of a father in law whose been moping around and bitching about his prostate cancer for 18 years now and refused to ever to a thing about it. When I give up, then the count-down begins. But maybe we can even make it in time for a breakthrough cancer cure. Who knows? Mike ----- Original Message ----- From: "kh" <tchtic@yahoo.com> Newsgroups: alt.support.cancer.prostate Sent: Tuesday, March 13, 2007 4:45 AM Subject: Re: PSA rising faster than my PP > I'm wondering my odds now that cancer has returned without a prostate. > Seems like if my PSA is .7 that is still hecka lower than it was preop. and > not much there for radiation to blow away. But I don't know the mechanics > of it all. Going to have to study up again with my text books. Walsh and > "for Dummies" According to my Rad-doc, in "failures", the horse already left the barn. They don't really know but that's the theory. Small colonies already started up in the usual places, some fail but others keep going, first the PSA rises, later the activity shows up on the bone scan and finally as bone pain and other symptoms. Then it kills you. When they say, "we got it all", they're really saying, "in most cases, we got it all but we never really know until the PSA starts to rise or the cancer manifests itself in other ways." The reason they're proposing rad is that they're "hoping" that the PSA is from an extension or tendril in the prostate bed. > I don't know your age, but at 56 if I were you I would gladly forgo sex and > opt for surgery. Then I would watch the PSA and hit it with chemo if needed. > Seems to me that every thing you can do to slap that bad boy down and > prolong your life. I'm 60 and 28 months post radiation. I've pretty much decided to opt out of surgery or cryo. Here's the problem. In the last year, my stuff has been working better. I have erections (better with a little chemical assist), Orgasms are OK, not quite as intense and too soon (3-5 minutes instead of 10-20 minutes) but OK. I even produce some semen which I "think" I can feel. It doesn't squirt though, it drips. The "stinging" while pee'ing has faded. There's still a touch of pink about once a week. I can drink 20 ounces of water and sleep through the night. Not a bad outcome except for the rising PSA. I was on Lupon for 8 months and unable to have erections for a year. I'm not looking forward to that experience again. I'll be seeing a medical oncologist shortly. I understand there's a fellow who specializes in Prostate Cancer in the area. Maybe intermittent hormone-chemo will help. I expect it will put an end to my libido and penetrative sex though. -kh > One year and 10 months after prostrate removal I decided to bite the > bullet and see my uro. about my lack of erections. In the process, I [quoted text clipped - 6 lines] > thanks > Mike Sorry Mike. Give us all the details and stats, and answers will follow. I know plenty in your situation, that have had wonderful results when all was said and done.  SignatureJK Sinrod www.SinrodStudios.com www.MyConeyIslandMemories.com > > One year and 10 months after prostrate removal I decided to bite the > > bullet and see my uro. about my lack of erections. In the process, I [quoted text clipped - 10 lines] > know plenty in your situation, that have had wonderful results when all was > said and done. Hi, Have you tried with transfer factor? I?ve heard it boost the inmune system and this reduce psa. My uncle has reduced it from 4 to 0.03 in 5 months without radium On 12 Mar 2007, you wrote in alt.support.cancer.prostate: > One year and 10 months after prostrate removal I decided to bite the > bullet and see my uro. about my lack of erections. In the process, I [quoted text clipped - 5 lines] > thought I'd be there! I would appreciate hearing from anyone who has > "been there done that". thanks Mike I've been there and done that! I had an RP in Dec. 2005. GS 7 (3+4) with a PSA of 7.12 and 1 core of 10 showing 5% cancer. Pathology came back T3 with positive margins, still GS 3+4, bilateral tumors 20% of organ involved. Post-op first PSA Mar/06) was 0.87 and the second taken 5 weeks later was 1.1 . Uro sent me to a radiation oncologist in May/06. I had 36 treatments of EBRT (65 Gy) thru June/july 06. First PSA post rad was Sept/06 at <0.1 and again in Feb/07 PSA <0.1 . This was the lowest scores possible for this particular assay). Because of the fast rising PSA post-op, Lupron was also recommended and I started with two weeks of Casodex to prevent the flair and then Lupron monthly beginning June/06. The Lupron was administered to bring the testosterone levels down to castrate levels. This it has done ... 2 readings same months as PSA have me having T<0.4 - lowest reading possible with the assay test. I am not having 'fun' with the side effects of the radiation nor the Lupron but the results of the rad and drug seem to be holding the PCa at bay right now - remission is good! I wish you well in your treatment - let us know how things are going Russ I am not having 'fun' with the side effects > of the radiation nor the Lupron but the results of the rad and drug seem > to > be holding the PCa at bay right now - remission is good! Russ, what side effects of the radiation are you having? I think this is good for us considering salvage radiation to know. Claude > One year and 10 months after prostrate removal I decided to bite the > bullet and see my uro. about my lack of erections. In the process, I [quoted text clipped - 5 lines] > I would appreciate hearing from anyone who has "been there done that". > thanks Glad to see you are "Michael" now and not just "Me". Been there done that. It's another kick in the crotch. You think you beat it and then you get the phone call. Radiation is a breeze. I went every morning and the people who work for me didn't even know I was going through radiation. The side effects can be a pain, but you can reduce them by exercising, hydrating and sleeping. Even before the treatments, I started walking 3-5 miles a day, 3-5 times a week. That keeps your body healthy and your "good cells" reproducing. I drank gallons of water. That keeps you hydrated and cleans away the dead and dying cells. I slept one extra hour every night. The side effects can be urinary irritations, bowel irritation, and fatigue. I had very minimal effects because of my regimen. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum Thanks Steve, I exercised a lot for my RP and feel it really helped me through but I wasn't sure about the rad. I have a indoct. Mon. morning and since the treatments are probably in the AM I was thinking about taking off with workers comp and getting a knee surgery at the same time because its hard for me to take off work to recoup. I have them both scheduled about the same time but I'm afraid one of the Docs. will find out and shoot the idea down. Kind of kills the exercise but I'll sure be able to sleep!! yippee. When was your radiation or is that what Lupron is, and how are you doing now? >> One year and 10 months after prostrate removal I decided to bite the >> bullet and see my uro. about my lack of erections. In the process, I [quoted text clipped - 23 lines] > The side effects can be urinary irritations, bowel irritation, and > fatigue. I had very minimal effects because of my regimen. > I exercised a lot for my RP and feel it really helped me through but I > wasn't sure about the rad. Exercise is good for all that ails you. I had a fairly active job (in and out of a car and walking) and active hobby (softball) most of my adult life. But, I did not really exercise until I was diagnosed. I started on a treadmill and continued through a cruise walking two miles in 34 minutes almost every day. I feel it helped me a lot through my recouperation. And I continued walking. By the time I realized I needed radiation, I was walking further, but less often. I decided to make a regimen of 3-5 times a week and 3-5 miles each time; 17-minute miles. I also walked (and still walk) in several local walk/runs for charity. My best time was something like 15:20 miles in a 5-mile walk (in other words, not fast). I maintain my walking, though I do much better in the summer than in the winter. I firmly believe it helped me through radiation and is now helping me through the side effects of hormone treatment. > I have a indoct. Mon. morning and since the treatments are probably in the > AM I was thinking about [quoted text clipped - 3 lines] > out and shoot the idea down. Kind of kills the exercise but I'll sure be > able to sleep!! yippee. You really do need to tell your surgeon about the radiation. I suspect he will not operate. Radiation kills cells. It does so indiscriminantly; burns right through your body wherever it is pointed. The only discriminatory function of your treatment is that it will constantly be pointed at your prostate bed. But, that will not save the cells along the six paths during each of the treatments. Your body is used to reproducing cells. It has about 100 Trillion of them and Millions are dying off every day and being replaced by Millions more. However, your body is not used to replacing the numbers of cells that will be killed during radiation. That is why you sleep. That is why you work your circulatory system (exercise). That is why you drink water (sloughed cells). You and your body are concentrating on daily healing the damage caused by the treatment. You do not want to have to try to focus on another area for damage repair. If you do this during radiation, your prognosis will be reduced for both in my unprofessional medical opinion. > When was your radiation or is that what Lupron is, and how are you doing > now? My RRP was 12/15/2000. By the end of 2001, my PSA began to elevate. By Spring 2002, we knew it was biological failure. My radiation treatments occurred every work day for seven weeks between May and July 3, 2002. Within a year, it became clear that the radiation didn't work either. So, I went on Lupron (hormone treatment) during July 2003. This should not discourage you. My dx PSA was 16 and yours was 4.1. My biopsy Stage was T3c and yours T1c. My Gleason was 7 and yours was 6. I don't know what type of surgery you had, when you had it, or what your post operative numbers were. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum >One year and 10 months after prostrate removal I decided to bite the bullet >and see my uro. about my lack of erections. In the process, I found out my [quoted text clipped - 5 lines] >from anyone who has "been there done that". thanks >Mike One more "been there, done that", for what it's worth.... I was diagnosed with PCA in 1995, at age 52. Elected RP, for same reasons you mentioned. PSA was undetectable after RP, until 2000, when it started rising. I tried HT (Casodex, and didn't care for the side effects) while I was considering options, then decided to go for radiation in mid-2000. After radiation, PSA was undetectable until 2005, when it started rising. Although levels were low, the rate of increase was rapid. (Plotted on a graph, the trend line was going to about 1:00 o'clock, over 6 quarterly tests.) Now, I've been back on Casodex since late 2006. I still don't care for the side effects; but, options were few. I just retired, early, to enjoy my life - and I'm doing that, gratefully, with a wife who has stuck with me through all this. After RP, sexual function was significantly impaired, but still acceptable. After radiation, sexual function was further reduced to extremely marginal. Now, with HT, memories of sex are still good. Like a friend (who is also in about the same situation) says, the last thing I'm going to do when this is all over is ask my doctor to perform a sex change operation on me - to turn me back into a man again! I appreciate his sense of humor and have come to the point where I can accept the situation without worring about it and enjoy life. My best wishes to you. BH [snip] >Like a friend (who is also in about the same situation) says, the last thing > I'm going to do when this is all over is ask my doctor to perform a > sex change operation on me - to turn me back into a man again! Hello, BH: It's a funny joke, of course ... but in all seriousness, I think that fighting this disease, enduring all the crap that we must, and still finding joy to share, is very manly indeed. --charlie > ... but in all seriousness, I think that > fighting this disease, enduring all the crap that we must, and still > finding joy to share, is very manly indeed. Very well said Charlie. Alan >>One year and 10 months after prostrate removal I decided to bite the >>bullet [quoted text clipped - 35 lines] > appreciate his sense of humor and have come to the point where I can > accept the situation without worring about it and enjoy life. Welcome to the newsgroup, Burney! What is your PSA now? SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum Hi, Steve. My PSA in February was down to 0.17. The previous trend line headed to about 1:00 o'clock reversed and is going in about the 4:00 o'clock direction, thanks to Casodex. Thanks for the welcome. Actually, I was quite active in this group in 1995 and 1996. It was very helpful to me to share with others. Tthen just got out of it. Now that I'm retired, I have more time and I'm interested to learn about how others are responding to hormone therapy. If I think there's a chance others might benefit from sharing my experiences with surgery and radiation, I'll be happy to do that, too. What's your status? A good St. Patrick's Day to you and to all other members of the club! Burney >>>One year and 10 months after prostrate removal I decided to bite the >>>bullet [quoted text clipped - 39 lines] > >What is your PSA now? > Hi, Steve. My PSA in February was down to 0.17. The previous trend > line headed to about 1:00 o'clock reversed and is going in about the > 4:00 o'clock direction, thanks to Casodex. 4:00 o'clock is good. We take what we can past 2:30... :-) > Thanks for the welcome. Actually, I was quite active in this group in > 1995 and 1996. I see. December 14, 1994. You were discussing a charter. This topic has come up a few times since. :-) > If I think there's a chance others might benefit from > sharing my experiences with surgery and radiation, I'll be happy to do > that, too. There are many of us on ADT adn IADT right now. It's not fun for any of us and horrible for some. > What's your status? My signature says it all (I think). Dx and RRP in 2000. Failure noted and RT in 2002. Failure noted and ADT1 in 2003. Failure noted and ADT2 in 2006. Current PSA is 0.05. If a cure isn't found soon, it's gowna kill me, but I aint going down without a fight! SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 PSA <0.04, <0.05 Non Illegitimi Carborundum > My signature says it all (I think). Dx and RRP in 2000. Failure noted and > RT in 2002. Failure noted and ADT1 in 2003. Failure noted and ADT2 in > 2006. Current PSA is 0.05. If a cure isn't found soon, it's gowna kill me, > but I aint going down without a fight! Looks to me like you're whupping up on it big time. -kh Now that you mention it, I gotta hand it to the wife. She makes all this crap a whole lot more comfortable than going it alone. I used bitch at her when she wouldn't put out for me on occasion. Now after 2 years she hasn't said a word except to coach me on possible injections. A thought to ponder on: Wouldn't it be better if the life process were reversed, wherein we are somehow born with wrinkles, diseases, aches and wisdom. As we progress through life, all of this improves until we die babys. Well BH, surely you don't expect medicine to taste good? Weight gain and lack of energy were my big side effects. My first PSA (at one month) after RRP was 0.35. Started ADT2 at one year out. I stayed on for 24 months. Before I took over management of my case, my uro wanted to leave me on ADT for the rest of my life. I've been off 4 years. My doubling rate was 2.82 months from Aug 04 to Jan 06. Projected restart of hormones in June 2006. Started exercise and pomegranate juice. It's now 16. 36 months -- not great, but lots better than 2.82 months. Projected restart 2008? I'll be more prepared for the side effects when I initiate hormones again. >>One year and 10 months after prostrate removal I decided to bite the bullet >>and see my uro. about my lack of erections. In the process, I found out my [quoted text clipped - 28 lines] >My best wishes to you. >BH |
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