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Medical Forum / Diseases and Disorders / Prostate Cancer / October 2006Your side effects?
The 2 Steve's comments on Cryo problems surprised me. I did not know about Cryo side effects. Anyone. I wonder about your side effects from your treatment. I don't believe the stats or the statements in the books and articles. It's not that they are spinning the story. Surveys that homogenize 1st hand reports into tables of numbers, then abstract from the tables, tends to lose value. What does 10-50% impotent mean? What was the population base? When were the stats taken? What's the definition of impotent? How were you before diagnosis? What was your diagnosis and treatment? How are you doing now? Me? I had perfect health for a 57 year old, brisk walking a couple miles several times a week, built like a power-lifter, easy, long lasting erections, good for 10-20 minutes of slow thrusting, seconds too; could write my name in wet concrete from 3 feet. PSA 10, T1C, Gleason 7 (4+3) in 5% of one needle. 8 months on Lupron, 25 IMRT, Pd-103 seeds. 10 months to a year after the last Lupron shot, the bald-headed mouse began stirring. 2 years post treatment, ejaculation is a dribbly quarter teaspoon. Erections are soft but adequate for penetration, 3 minutes of thrusting is about it. This is very frustrating for both. Vitamin-V helps a little. It's good to be inside a woman but not as good as before. There's an "edge" missing. Lost the ability to "concentrate" during treatment; that's returned and have resumed contract work. It might be the Lupron directly or the irregular blood sugar. Libido is off. Testosterone is tracking at the low end of normal; could the Lupron still be responsible? Without a healthy, fluid filled prostate, this is a perpetual refractory period. Orgasms are OK, more like seconds or thirds as there's no thrill from squirting semen. Sure miss that. I can drink 20 ounces of water and sleep for 8 hours but in the morning when I get up, I really have to go. Urgency isn't the only issue. There's stinging and burning. I take an Aleve a day. Still trying to work off the Lupron-belly; blood sugar is back on track; manage 2 erections w/ orgasms/week but not capable of more. -kh > Anyone. I wonder about your side effects from your treatment. I don't > believe the stats or the statements in the books and articles. The paint peeled off my car and my dog died, but that means even less to YOUR likely results than statistical tables because it's ANECDOTAL. Recreational sailors have a saying for those who want to predict every little wind shift from every little cloud that drifts by: "Clouds Don't Mean sh.t", or CDMS. What it means is that, although individual passing clouds often DO produce small wind transients, they have little if any effect on the afternoon's sailing, i.e., the big picture. Similarly, "ADMS" (to another person's SE likelihood). > It's not that they are spinning the story. Surveys that homogenize 1st > hand reports into tables of numbers, then abstract from the tables, > tends to lose value. What does 10-50% impotent mean? What was the > population base? When were the stats taken? What's the definition of > impotent? Thus the 10-50% range. > How were you before diagnosis? Great except for mild ED, increasing bladder urgency, and decreasing stream. > What was your diagnosis and treatment? G8, SVI, PSA 8.something, PSAV>2.0, probably doomed to die OF PC some day. > How are you doing now? GREAT . . . because I don't consider pads and very modest erections a big deal. PSA 0.014 and falling @ two years post-op, can remove loose rust with my urine stream, and still very athletic compared to most 30-year-olds -- and I'm 63. But that means absolutely nothing to you unless you collect and tabulate stories from thousands of others, i.e., build statistical tables from w.nkers like me. Hint: save yourself the effort; that's already been done. ;-) > manage 2 erections w/ orgasms/week but not capable of more. I haven't had a noticeable (to anyone else) erection in exactly two years, but I've had a few hundred orgasms, most of them great, and my firmess is still increasing verrrrrrry slowly. Glassman reports up to two a day. Our most IMPORTANT nerves don't care how hard we are. I.P. > > Anyone. I wonder about your side effects from your treatment. I don't > > believe the stats or the statements in the books and articles. > > The paint peeled off my car and my dog died, but that means even less to > YOUR likely results than statistical tables because it's ANECDOTAL. Here're the official side effects stats for Lupron from http://www.rxlist.com/cgi/generic4/lupron-d75_ad.htm It's formatted better at the site. ================ Start == In a clinical trial of LUPRON DEPOT 7.5 mg, the following adverse reactions were reported in 5% or more of the patients during the initial 24-week treatment period regardless of causality. LUPRON DEPOT 7.5 mg (N=56) N (%) Body as a Whole General pain 13 -23.2 Infection 3 -5.4 Cardiovascular System Hot flashes/sweats* 32 -57.1 Digestive System GI disorders 8 -14.3 Metabolic and Nutritional Disorders Edema 8 -14.3 Nervous System Libido decreased* 3 -5.4 Respiratory System Respiratory disorder 6 -10.7 Urogenital System Urinary disorder 7 -12.5 Impotence* 3 -5.4 Testicular atrophy* 3 -5.4 *Due to the expected physiologic effect of decreased testosterone levels. =============== End == Hey, it doesn't mention sugar or triglycerides. I spiked a 300 fasting blood sugar and 800 triglycerides on Lupron. They go on to say: ================= Start == In this same study, the following adverse reactions were reported in less than 5% of the patients on LUPRON DEPOT 7.5 mg. Body as a Whole - Asthenia, Cellulitis, Fever, Headache, Injection site reaction, Neoplasm; Cardiovascular System - Angina, Congestive heart failure; Digestive System - Anorexia, Dysphagia, Eructation, Peptic ulcer; Hemic and Lymphatic System - Ecchymosis; Musculoskeletal System - Myalgia; Nervous System - Agitation, Insomnia/sleep disorders, Neuromuscular disorders; Respiratory System - Emphysema, Hemoptysis, Lung edema, Sputum increased; Skin and Appendages - Hair disorder, Skin reaction; Urogenital System - Balanitis, Breast enlargement, Urinary tract infection. Laboratory: Abnormalities of certain parameters were observed, but their relationship to drug treatment are difficult to assess in this population. The following were recorded in 5% of patients at final visit: Decreased albumin, decreased hemoglobin/hematocrit, decreased prostatic acid phosphatase, decreased total protein, decreased urine specific gravity, hyperglycemia, hyperuricemia, increased BUN, increased creatinine, increased liver function tests (AST, LDH), increased phosphorus, increased platelets, increased prostatic acid phosphatase, increased total cholesterol, increased urine specific gravity, leukopenia. ================= End == I can pick out the word hyperglycemia but nothing about increased triglycerides. While I had the 300 fasting blood sugar, I had a sugar buzz like you can't imagine. That's not to say that Lupron doesn't help some but you should monitor your blood sugar while on it. I'd prefer to read direct 1st hand reports, dozens of them, than someone else's interpretation of homogenized data tables. The books mention Cryo but don't give the impression like I got from the two Steves. It means a lot to ME when someone here says, "I had XXXX treatment and my weiner has been YYYY and ZZZZ ever since." or "I had AAAAA treatment and here's how things are going." Neither scientific stats presented by experts nor 1st person anecdotes is a guarentee of anything but the stats are too bland and neutral. In a scientific survey, I'd have to report both ED, which Vitamin-V doesn't help all that much, and urinary issues, urgency incontinence. The difference is, I used to be good for several times a week and a couple times a night, essentially every opportunity. After Rad, twice a week is all I'm good for. The other day, I drank 5 cups of coffee, got in my car and drove to work. What a mistake. I knew that from the beginning. By 20 minutes I was in trouble. At 30 minutes, my eyes were crossing. When I saw the building, the urgency kicked in and I had to pull over. I made it to a public mensroom, barely, I was starting to sprinkle as I jerked the zipper down. That would never have been a problem before treatment. How do you express that in stats? 10-50% have ED? Yes, that's me but from what I can tell, I was darn lucky. -kh -kh > Hey, it doesn't mention sugar or triglycerides. I spiked a 300 > fasting blood sugar and 800 triglycerides on Lupron. Strum lists both in his ADT treatise at http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html and I've seen it elsewhere in ADT discussions, studies, etc. I.P. > Strum lists both in his ADT treatise at > http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html > and I've seen it elsewhere in ADT discussions, studies, etc. Thanks, I sure could have used that list a year and a half ago. My three docs, Uro, Rad, and Internal Medicine, all said there was no connection between the Lupron and my 300 fasting sugar, they didn't even look at the Triglycerides. I had all these listed at the site: Loss of blood sugar control in patients with diabetes mellitus (sugar diabetes) Alzheimer's-like symptoms (severe short-term memory difficulties, inability to concentrate, etc.) Increase in urinary symptoms (? urination or difficulty starting the urinary stream) Increased serum cholesterol (LDL, or "bad" cholesterol) and/or & triglyceride levels The inability to concentrate made working a real struggle. I do low-level (as in the fundamentals, the hard stuff, not low level in the sense of easy-to-do or entry-level) computer programming. About the time that erections returned, I was able to handle long logic chains again and my sugars fell back to normal. I clock 105-115 typically now. I figure most of the urinary symptoms was the radiation but who knows? I sure had it while on Lupron. -kh kh, just goes to show that everyone is different. I have been on Eligard (Lupron) for 29 months. I have maintained a 134 triglycerides and 170 cholesteral testing each quarter. Had 113 Pd seeds and a short course of IMRT on a Peacock. Urination burning quit after one year. Never have lost the ability for erections, although I admit its not as stout as it was. Testosterone has been below 2 for past two years where it once was 200. Libido is not like it was, but memories and imagination break though... lol Orgasms are very intense, more so than before. The only different is that 2 years after seeding, I was completely dry. (Which is where the docs want you.) Weight gain (+80 lbs) was attributed to 30 mg of steroids a day for six months during chemo. Guess it isn't all bad to gain weight during chemo... I have only trimmed 22 lbs and hover around 250 right now. No problem with blood sugar. All other blood work is normal and it has been monitored every quarter since November 2001. Good luck as you continue fighting the bastard. Gourd Dancer >> Strum lists both in his ADT treatise at >> http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html [quoted text clipped - 29 lines] > > -kh > kh, just goes to show that everyone is different. I have been on Eligard > (Lupron) for 29 months. I have maintained a 134 triglycerides and 170 > cholesteral testing each quarter. Had 113 Pd seeds and a short course of > IMRT on a Peacock. Urination burning quit after one year. Never have lost > the ability for erections, although I admit its not as stout as it was. Any erection is a good erection, that's my feeling. I'm not going to crack walnuts by whacking them with this rubbery stick. Best analogy I have is a standard American hotdog. If I have to dredge up memories of that small breasted doctoral candidate 30 years ago, well, I do what it takes. That gal sure loved sex. My urethral burning peaked in the 1st month, faded and came back about the 18th month. I'm just at 2 years now and pee'ing is a slight jolt. It's easy to tolerate but is a difference from before. > Testosterone has been below 2 for past two years where it once was 200. > Libido is not like it was, but memories and imagination break though... lol Yes! Keep that mind working! My libido has dropped off. How do you express how much. The old commercial, "I'd walk a mile for a camel." The urges to pull dumb-guy-stunts to impress the babes aren't there. One odd thing, and someone else mentioned they noticed it a while back; I have the distinct impression that women are checking me out more. It's nothing overt and maybe it's my imagination. I've theorized that it's several factors. I'm several years older and the ratio of men to women continues to change. I know several guys who have died recently or taken seriously ill. The lower Testosterone and libido makes me less interested in women and more interesting to them. It's the "they want what they can't get easily" syndrome. Most of this is below the radar, the lack of eye contact, not checking them out, "I need to do more to get his attention." As the treatment recedes into the past, I'm at 2 years, my health and general attitude toward life has improved. You've lost weight so you might notice that too. I do contract work and my income dropped off during the illness. As my health and cognitive powers have returned, my income has increased. Ditto my attire and externals. I've started fixing up my cottage. I waxed my car for the first time in 3 years. Although I'm not prone to "depression", during the diagnosis and treatment, I was preoccupied. This is changing and life and living is the order of the day. > Orgasms are very intense, more so than before. The only different is that 2 > years after seeding, I was completely dry. (Which is where the docs want > you.) Not for me. I wish it were so but my orgasms are half what they used to be. I'm hopeful that they will improve though. > Weight gain (+80 lbs) was attributed to 30 mg of steroids a day for six > months during chemo. Guess it isn't all bad to gain weight during chemo... If that kept the other side effects at bay then it was worth it. > I have only trimmed 22 lbs and hover around 250 right now. I've been pretty steady on weight. During the worse of it, I went up to 197 pounds. I'm at 190 and should weigh in at 180, well 175. > No problem with blood sugar. All other blood work is normal and it has been > monitored every quarter since November 2001. > > Good luck as you continue fighting the bastard. You too but my focus now is to get back my life. Sugars are normal. So is everything else. My total Cholesterol is slightly elevated at 205 but I had a high-tech heart scan and everything was perfect. -kh > Here're the official side effects stats for Lupron from > http://www.rxlist.com/cgi/generic4/lupron-d75_ad.htm I don't think that information is up to date and it's definitely not official. Here's a more comprehensive and official document available from the FDA website: http://www.fda.gov/cder/foi/label/2001/20517S10lbl.pdf TAP Pharmaceuticals also publishes the package inserts for their products on their website. See: http://www.prostate.com/lupron/productinfo/ then click the the particular dosage to see the product insert. This information is what the doctors see when they open the package with the hypodermic needle. Alan > Me? I had perfect health for a 57 year old, brisk walking a couple > miles several times a week, built like a power-lifter, easy, long > lasting erections, good for 10-20 minutes of slow thrusting, seconds > too; could write my name in wet concrete from 3 feet. I'm very similar to your desciption. > PSA 10, T1C, Gleason 7 (4+3) in 5% of one needle. 8 months on Lupron, > 25 IMRT, Pd-103 seeds. I'm PSA 13.8, GS 3+4 60% in one, 40% in another. Just curious, did you go to Dattoli in Florida? I'm having my iodine seeds implanted on Monday, 10/23. Then seven weeks of IMRT. John > I'm very similar to your desciption. > [quoted text clipped - 7 lines] > I'm having my iodine seeds implanted on Monday, 10/23. Then seven weeks > of IMRT. No, the INOVA cancer center, which really has their act together on radiation oncology. I'm guessing that your team is doing both IMRT and seeds because you're above 10 and have some 4 in that Gleason. Either gets the docs ansy, that's what they told me. Couple things to double-check with them. INOVA gave us a pharmacology schedule that started with Decadron to reduce the swelling and pills (Pyridium) to ease the stinging (it dyes the pee orange), Flomax, Aleve, Colace, and 3 or 4 others. I believe it helped me. Decadron is a big bang so they gave us only enough for a couple weeks; then transitioned to Flomax and Aleve. At 6 months, I dropped the Flomax and continued with just Aleve. INOVA also gave us a low-bulk diet. It would be constipation city but for the Colace and instructions to drink lots of water. The reason for the low-bulk is to keep your colon from expanding toward the seeds in your prostate. The geometry doesn't make sense to me but I followed their instructions. You don't want the radiation to affect your colon. As for the seeding itself. It was extremely easy. I wanted to go spinal block so I could watch the procedure but since I could still feel and wiggle my toes, they knocked me out. They woke me up, gave me something to drink. I watched the Nurse pull the catheter. I spoke to the Urologist and after an hour, I walked out of there. That's walked out. No courtesy wheelchair. I had arranged a ride but I was steady enough to drive home. That afternoon, I passed a little blood in my pee, a couple small clots and that was it. Easy. Nothing to it. At about 3, 4 weeks, the cumulative effects of the radiation peaked and I was pee'ing several times a night. During the day, I had to pee every hour or so. Not a big deal with a desk a few steps from the men's room. I expect that you will do better than I did. I think the Lupron slammed my Testosterone. My last blood panel was under 300. That's not much. Expect some dimminishment of erections and almost no semen to speak of. At two years, I still have some stinging and burning when I pee. I take 1 aleve a day for that. I have many complaints but most are related to the Lupron. -kh > I'm guessing that your team is doing both IMRT and seeds because you're > above 10 and have some 4 in that Gleason. Either gets the docs ansy, > that's what they told me. Actually, my doc, Hamilton Williams, does SI (iodine) then IMRT on all his patients, regardless of PSA or Gleason. He was at RCOG for 10 years (that's the way they did it) but is on his own now. So, I'm getting the best of both worlds. He has done over 2300 seedings (maybe more than anyone in the world) but, since he's just starting his new practice, he's not very busy and I'm getting lots of personal attention. > Couple things to double-check with them. > > INOVA gave us a pharmacology schedule that started with Decadron to > reduce the swelling and pills (Pyridium) to ease the stinging (it dyes > the pee orange), Flomax, Aleve, Colace, and 3 or 4 others. I believe > it helped me. My uro gave me prescriptions for Hydrocodone/Apap for pain, Levaquin antibiotic, and Flomax. I've spoken to several of Dr. Williams patients and they all said they suffered vitually no side effects. A little urinary urgency and that's it. > They woke me up, gave me something to drink. I watched the Nurse pull > the catheter. I spoke to the Urologist and after an hour, I walked out > of there. > > That's walked out. No courtesy wheelchair. I had arranged a ride but > I was steady enough to drive home. That's so cool. I get the seeds tomorrow, Monday, then go back Tuesday for a CT scan to make sure the seeds are where they are supposed to be. They will take the catheter out then. > Expect some dimminishment of erections and almost no semen to speak of. Does the semen stop right away. I was told it would gradually drop in volume. Also, I expect what semen there is will be bloody, just like after the biopsy. Is that correct? Thanks, John > That's so cool. I get the seeds tomorrow, Monday, then go back Tuesday > for a CT scan to make sure the seeds are where they are supposed to be. > They will take the catheter out then. They yanked mine right away but I suppose the next day makes sense. > Does the semen stop right away. I was told it would gradually drop in > volume. Also, I expect what semen there is will be bloody, just like > after the biopsy. Is that correct? I didn't think it was as bad as the biopsy but then, I was 5 months into the Lupron and wasn't emitting much fluid for recreation. The other thing that surprised me is that they shaved me where the sun don't shine. I expected to wake up with a bandaid down there. Nothing. I asked the rad doc about it and he said there wasn't any need. I checked out the site with a mirror. Hardly a mark. Drink a lot of water. Even though this treatment might sound easy, you're getting what-fer, beamed up the wazoo. Drink and pee, the more you drink, the better the plumbing will be. Someone told me that you want your pee to be dilute and not concentrated. That way, it'll sting and burn less. Like I said, I had it easy. Some guys have trouble pee'ing afterward. I was always a firehose before so I figure I must have a big tube and big bladder. As long as I stuck to the pharmacology and kept drinking, I was OK. About the end of the 1st month, I was getting up 3, 4, 5 times a night to pee and going every hour or so during the day. Each month after that, I went a little longer. By the 6th month, I was sleeping through the night. Because of the Lupron, I don't have a good sense for how the semen flow abated. At 2 years, I still produce "some", maybe a quarter teaspoon that dribbles out after the fact. All in all, except for the Lupron, it wasn't horrible. About the level of discomfort of dental work. I figure I gave it my best shot and we'll see what the future will bring. -kh > The other thing that surprised me is that they shaved me where the sun > don't shine. I expected to wake up with a bandaid down there. > Nothing. I asked the rad doc about it and he said there wasn't any > need. I checked out the site with a mirror. Hardly a mark. Yeah, I asked my girlfriend to draw a smiley face on my perineum, but she didn't think that was a good idea. > Like I said, I had it easy. Some guys have trouble pee'ing afterward. > I was always a firehose before so I figure I must have a big tube and > big bladder. As long as I stuck to the pharmacology and kept drinking, > I was OK. Me too. I can whiz like a race horse so my doc thinks I should be okay. Thanks for the tips. I appreciate it. John |
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