Welcome new friend- Romeo

Welcome to Hw. Thanks for sharing your Journey with us.

In another thread, Romeo said:
This is my first time on the blog and just completed the survey so will be anxious to see the results and where I am at. I discovered I had cancer by complete accident as I was fishing off the coast of Florida and drinking beer. I fell and hurt my wrist which swelled up tremendously. I was concerned that I broke it and stopped by my doctor to see if it was. He said it was not but said while you are here let me have some blood. I had to catch a plane and did not want to argue with him so do so. A week later he called and said my PSA was 4.7 (I had never had a test before and did not know what a PSA was). He said because of my age (52) he wanted me to have a biopsy which I did and they found out that I had cancer in 6 of the 12 samples taken and was a gleason 8. I had robotic laposcopic surgery on 11/3/08 and took a couple of months off from work. The cancer was contained in the capule and after the pathology report I was down graded to a gleason 7. He spared the nerve on one side completely and said he had to shave some off of the other one. I was incontient not to bad for about 4 months or so and now normal. I had trouble with erections for the first few months but recently and I mean in the last few months I have been having erections when sleeping and with the help of levitra within the last month or so have been having pretty good erections. about 6 weeks ago I received .3 ml injection of trimex by doctor and had an erection for 5 hours and had to go back into hospital because it would not go down and they had to drain the blood out and give me some meds. I know this sounds delightful to everyone but I can tell you it was not to much fun and hurt. The doctor told me that I might have reacted this way because I was close to a normal erection anyway and might have been hypersensitive to the shot. Does any of this make sense to any of you and what do you think I can expect going forward?

Thanks for you time.

And another welcome, Romeo.

The long lasting erections (priapism) are a known hazard with injections. Some of the trimix guys may chip in here, but to me, 0.3ml of trimix seems like a fairly large first dose. If you use it again, try a substantially reduced dose (quarter) and keep some Sudafed on hand.

I find with bimix it takes me about 8 hours to return to my usual puny state, and by 2 hours without further stimulation, the erection is clearly on the decline. By four hours it is still a semi-erection, but with no pain and still declining, I don't see it as a problem.

As your natural erections seem to be progressing nicely, you probably needn't have an injection again. Nocturnal erections are a good sign and good natural erections even with the aid of oral ED meds are a very good sign. Onwards and upwards ....

Hello Romeo,
When my doctor prescribed trimix he told me to start with .1 and if that is not enough to gradually increase the dosage after waiting at least 24 hours. I now use .3 and get an erection that lasts a couple of hours. Try reducing your dosage to .15 and see if that works for you.

Hi Romeo and a belated welcome.

With most doctors that is the case. 3-month testing the first year and if no indication of a rise in the PSA, then every six months the second year and then usually annually after that. But that is for those with low to moderate risk disease. Those with high risk disease will usually be monitored quarterly for the first couple of years before going semi annual.

High Risk in my assumptions would be the stage 3 & 4 guys. A good example of high risk would be Tony, one of our moderators. He was a T3 with extensive node involvement and seminal vessel involvement. For the life of my I have no idea why he wasn't stage as a stage 4, but I am sure he could answer more questions in detail about that.

So I suppose the best thing to do is to start with say .05 then .1 then .15 and so on?  Why did someone suggest to have Sudafed handy?  I was a bit confused about that statement.

I would have never thought of that rubber band trick but makes all the sense in the world.  How long would you wait before taking the sudafed? 2 hours, 3 hours, or more?  I still have all of my nerve bundles on one side and almost all on the other side.  I am going to take a small dosage and see what happens.

Ha ha ha!  yes tons of information but you do not realize how valuable the information actually is until you hear something you don't know.  Here is a funny story as when I got my long erection I received the shot and immediately reacted and when home for a couple of hours before I had to go to a business lunch outside at a mexican restaurant.  Needless to say I was at full mast the entire luncheon and afterwards with my shirt pulled down I was trying to escape to my car to go home and a woman was standing in front of me smiling staring at my member as she spoke on her cellphone.  I almost told her "baby this is not for you" but had to get home to figure out what to do. 

Sleepless,

Actually at the time the gal was really good looking and yes it is funny now.  I have three non detectable psa tests done and just hope that it is over as does my wife.  I was very lucky and might have been saved by beer and fishing and am grateful.  I looked at your numbers and you are fortunate as well so may luck be with you my friend.

Good luck in your future testings, deja vu words..., the doc said it was "contained"(or I got it all), that is his opinion(which is empirically an unknown assessment and could be incorrect) and it is stated flatty to many a patient no matter what stats they might have been found with. If they could be legally held to the words, few would be in practice today...countless patients have found it was afterall not contained or doc did not get it all.

 Get tested as often as you wish, but with a gleason 8 found  (remember biopsies are hit and miss and you can have various Gleasons scores found within your gland(I had 7,8,9's)...in other words a patient can have a gleason 9 or 10 even and it was missed via biopsy(since they can miss plenty) or the pathologists if not one of the reknown experts could easily mis-read a Gleason 8 whereby upon review it might be a 9 or such). What it means is stay vigilant for years on your testings regardless of if your doc says you are even cured within 1- 2 yrs. of safe tests, after maybe 10 yrs. of clear psa tests then start thinking you may be cured.

Gleason 8, 9, 10 are associated with high risk patients in general. PCa is more of the the twlight zone, than black and white. Might not be what anyone wishes to be the reality of PCa, but it is what it is.

Another variable is "micro mets" or because of perinueral invasion from your prostate it is possible to have PCa somewhere else and go undetectable for years. There are cases of patient whom did not relapse or were looking clear for 10 yrs., and then find PCa show up elsewhere, even with clean pathology post surgery, etc.  Dr. Barken has commented upon this so called phenomenon. I doubt he is on drugs in making his assessment, the patients exist out there to prove this.

 

Post Edited (zufus) : 8/15/2009 7:41:13 PM (GMT-6)

Thanks for the info Tony and will do.  How do you guys get your specifics printed blow the email?  The reason I ask is that based on the biopsy results before surgery I ws a gleason 8 but after the surgery the pathology report said I was a gleason 7 which made me feel a bit better althogh I am really not sure the difference really of a 7 versus an 8.  Honestly I was in a mental fog during most of this and much of what was discussed just went by me as I was so focused on getting better.  I do know that nothing was detected outside of the capsule and even what was in the capsule was isolated in one location.  Seminal vesicles and lymph nodes were clear.

Thanks