Prostate Cancer

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Yes, i just started looking for info bcs I am so frustrated with this and was trying to find some info from anyone who was going through the same thing. I did find out that there is some medication that could help,which I was hoping there might be. I did lose a lot of weight, gained most of it back and will start exercising later this week to try to get back down.I'm getting used to wearing pull-ups, but with this stress incontinence I have to change often.Continue to get better and I hope I get there soon

 

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It was difficult exercising for about 3 months. I can now exercise without incontinence. I exercise about 5-7 hours a week, including stretching, floor exercises, some yoga, recumbent bike and walking. I also lift some weights. I think it is important to stay active. I took 3 months off of work to recover and am back working a couple of days. I do wear pull-ups then, but it is mainly a precaution. They are generally dry at the end of the day.Keep doing the Kegel exercises and stay positive. Did you say you had asked your physician for Imapramine?

 

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No, I haven't asked my doctor about any medication yet. I've learned about several different medicines on here.

 

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I'm sure there are numerous treatments. I just found the combination of Imipramine and the Kegel exercises were effective for me. Maybe for someone else, other meds might be more appropriate.I would do the Kegel exercises numerous times a day. I am taking less medicine now. I hope you post what works for you. It might help another guy.

 

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Well, it has been almost 9 months since my surgery and my PSAs have been rising. Nadir was 0.08 and at 9 months it is 0.3, so I am planning to get salvage radiation, with Lupron. 40 treatments-5 days a week for 8 weeks. Have any of you been in this situation after the robotic prostatectomy? I thought my cancer was gone-surprise! It's not. I was a T3b-positive margin, seminal vesicle invasion and Gleason grade 5. I am hoping the SRT is effective and that the side effects are minimal.

 

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James,
Good luck with your follow-up treatments. I hope they will reduce your PSA to a safe level.

 

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Thanks, Patrick. I am very anxious and apprehensive, especially about the accompanying Lupron hormone injections that accompany the IMRT. Has anyone out there
been down this path? I will, however, stay optimistic.

 

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I have been reading many horror stories about people's reactions to Lupron injections and am hoping to hear somebody say that it wasn't too bad. I have agreed to get an initial 30-day injection to see how I react, but am still getting nervous about it.

 

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The Lupron injection was not bad. I am getting them monthly and have 40 sessions of IMRT scheduled because my PSA more than doubled in the first 9 months post-op. I am a little tired and somewhat depressed. I just had my 8th treatment today. I anticipate there being a cumulative effect as I get more radiation under my belt-no pun intended.

 

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I had my 13th radiation treatment today and am experiencing more urgency and frequency. In addition, I now have sciatica, which I am wondering if it is somehow related to the treatments-maybe not. I continue to hope that the cumulative effect will not be much worse. Having gone through this after the Da Vinci surgery, I am pretty frustrated in having to deal with these issues, which I thought were behind me, again. I am also wondering how long I will be on the Lupron injections once the 40 radiation sessions are completed. I would appreciate any feedback, if you have been down this road. Thanks.

 

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Just found this site. I had robotic surgery 1/2013. The surgeon said the cancer had broken through the capsule but that the carterization might have gotten it (not true). The robot also clipped my bladder which required opening me up. We moved half way across the country and 18 months my PSA also went to .9. My doctor prescribed 38 radiation treatments (10/14).He also prescribed 2 years of Lupron (6 treatments) I have now completed 5. My incontinene was really bad and the doctor suggested microlastique ( injections of colagon in the uterus) Incontinence worsened and a second try was attempted 12 days later with no improvement. About a month later I started having blockage problems which l led to 2 trips to the ER. I ended up with bladder infection. I am now in my 2nd of 3 weeks with a catheter. It has been suggested that I consider an artificial urinary sphnichter which seems very scary to me. Sorry for the long post but a lot has happened in the last 3 1/2 years. Jim

 

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I had the original surgery at the Seattle Cancer Center. I returned to my room at 5 p.m.. The doctor was leaving on a trip the next day and said his associate would check on me. At 7 a.m. The next morning he came in and announced that I had been released and could go home. At 9a.m. I literally walked out of the hospital across the parking lot, catheter and all!!! PSA is now negligible!!!!!

 

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I had completed my 40 adjuvant radiation treatments last year and my PSA had dropped to 0.01. I only had 2 months of Lupron and now am wondering if I should have had more because my PSA is rising again, now 0.33 and I suppose hormone therapy is next. It is very depressing, having had the surgery and radiation, but still I am not out of the woods. Has anyone been down this path and have any suggestions? I want to remain positive, but sometimes it is difficult.

 

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Well, nobody responded to my post 2 months ago. I get another PSA and alkaline phosphatase test tomorrow. I am pretty anxious about getting the results. I do take benedryl to sleep and was reading that it could affect the results of the Alka phos test. Does anyone know anything about that?

 

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@James

It's entirely possible no one here has had similar experiences enough to respond. I know I have not, even tho my prostate is monitored for other reasons.

The PSA readings you present seem well out of range, by my experiences -- way low. Are they on the Gleason scale? Mine have centered around 1.7 to 2.6 (Gleason) for over 10 years.

What interpretations have the medical professionals given you on these scores? What do they mean in relation to your situation?

 

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Andy 1050, Thanks for your response. You are probably correct that nobody has had similar experiences, but I don't think I am the first one to go down this path of frustration.
Indeed, my PSA readings are low, but not compared to the 0.01 nadir. I believe the urologist is concerned about the PSADT (doubling time) and also that my PSA never did reach 0.00 after the robotic surgery and now continues to rise even after the adjuvant radiation therapy. My Gleason score following my second biopsy, prior to surgery, was 4+3 (7). The surgery path report stated that I was a stage T-3b because there were positive surgical margins and they found microscopic cancer cells in the left seminal vesicle. Because of the PSA velocity in the 9 months following surgery, salvage radiation was recommended. There seems to be a lot of controversy concerning recommendations, following biochemical failure at this point and exactly how it is defined. I am hoping the PSA increase is only what is called a PSA bounce, which is sometimes found after EBRT. From my research,there are 2 different definitions concerning 3 consecutive PSA increases after salvage radiation. The older one is the ASTRO and is defines a PSA rise to 0.1 to 0.5 ng/ml as possibly a PSA bounce. The newer definition is the Phoexix (2005) and it defines treatment failure as a PSA that has risen 2 ng/ml higher than the nadir, i.e, nadir (in my case 0.01)+2. However, it stipulates that it should not be used to guage treatment success with less than two years of tests.I will get my 3rd post radiation PSA results this afternoon. Maybe I am over anxious, but really do not want to go on androgen deprivation therapy. There was also confusion concerning the ALKA PHOS test. Evidently, there is a more thorough one that measures Isoenzymes in 3 different organs and a basic one that only measures liver function. The lab only did the basic one, but I think I should have the Isoenzyme one in order to see if any cancer has spread to my bones.

This is a lot of information and I am still trying to get a firm grasp of it. Dr. Patrick Walsh's book A Guide to Surviving Prostate Cancer has been a great reference for me.

I do appreciate your response to my post and hope I clarified your questions. To be continued.

 

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I consulted with the Urologist and have an appointment to discuss details with my oncologist. Tha basic Alka Phos (liver) was still within normal range, but my PSA has skyrocketed from 0.33 to 4.2, so the next step is ADT and basically deciding between Eligard and Lupron, which, I think, are basically the same chemical, but made by different companies. I would prefer the low dose, 30 day version, but the Urologist wants me to get the 3 or 4 month shot. Has anyone out there gone through ADT with these?

 

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My PSA has remained negligible since 38 radiation treatments and 2 years of quarterly Lupron injections ending last September. I am still 100% incontinent. After trying collagen injections this time last year with no improvement, I am now scheduled for an AUS the 3rd of August. Excited and very nervous!

 

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That is a bummer with the incontinence. Did you ever try Imipramine? I hope the ADT does not elicit a recurrence of the incontinence I experienced after my surgery. I am basically dry now, with occasional stress incontinence. Before my robotic surgery, I tried Avodart and broke into a rash, so switched to Proscar. For this reason, since I have never been injected with Eligard, I am thinking maybe the lower dose for 30 days might be better in case I react to it. I did okay with Lupron for 2 months during my radiation, so maybe I should stay with it. From what I have read, Eligard and Lupron are both leuprolide. I am just apprehensive about a 3 or 4 month injection, if I were to get a reaction.

 

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I had a CT and bone scan and both bad news. I might have peritoneal and liver cancer. My last PSA was 4.3. I have to get a PET scan to confirm. I feel lousy that the surgery, and salvage radiation were not successful and now I am scrambling to either go on ADT or chemtherapy. I am looking at innovative technology called Bemer. I decided to go on a couple of trips and face the PET scan music when I get back mid September. Is anyone familiar with Bemer?