Welcome new friend- Romeo

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 8/13/2009 5:23 PM (GMT -6)   
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.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/13/2009 5:35 PM (GMT -6)   
hello and welcome to HW romeo. sounds like you been through the whole gambit with your pc dx, treatment, and still in recovery. good thing you fell down and hurt yourself. a few more months or years, and your PC might have way out of control. glad it was caught at a time where there is hope. please keep us posted of your journey

david in sc
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 8/13/2009 11:55 PM (GMT -6)   
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 .... turn
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.
14 months: Occasional nocturnal erections.


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/14/2009 10:31 AM (GMT -6)   
Purgatory and Piano,
 
Thanks for the words of encouragement and I believe you might be right in thinking that the .3 was to much for the first time but that was the suggestion of the doctor but if I do it again and that is a big if because I am quite gun shy I will do no more than .1 if I do it at all.  I have tried several of the ED meds just to help me along viagara, cialis, and levitra and for some reason levitra seems to work the best.  I am just hopeful that I will continue to progress and have been real happy with how I have done thus far and did have a question as to how much improvement is normal from 12 - 24 months?

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 8/14/2009 10:54 AM (GMT -6)   
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.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/14/2009 11:16 AM (GMT -6)   
Thank you for the reply Ed,
 
I have another question.  I have had 3 PSA tests after my surgery and getting ready for my 4th.  All 3 have come back <.1 and if the next one comes back that way then I am only to have the test twice per year.  Is this consistent with everyone else's instructions or understanding?
 
 

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 8/14/2009 12:11 PM (GMT -6)   
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.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/14/2009 12:14 PM (GMT -6)   
Les,
 
So that means I must be considered low to moderate which is good.  What would constitute someone who is considered high risk?

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 8/14/2009 2:56 PM (GMT -6)   
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.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 8/14/2009 3:02 PM (GMT -6)   
Using a fresh batch of Trimix with the Alprostadil raised from 2.5 mcg to 20 mcg, I have reduced my useage from .3ml/units/cc to .05 ml/units/cc. I started the new with .1 ml, and got a 6 hr. erection, so dropped to .05 for a 3 1/2 hour one, with only a slight drop in rigidity. It's the old story of penile injection, the more you stimulate, either manually or partner- the more firm an erection you will get.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.10ml 2X week continues
PSA's: .04 each test since surgery


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/14/2009 4:49 PM (GMT -6)   
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.

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 8/14/2009 5:21 PM (GMT -6)   
Sudafed is a self-help remedy for priapism. With a much reduced trimix dose, you probably won't need it, but even so, having it available will reduce the fear factor.

One item that gives me consistently reliable injections is rubber bands. I wrap a few around the base of the penis before the injection and keep them on for three minutes after. The theory: it keeps the drugs hanging around long enough to do their magic.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.
14 months: Occasional nocturnal erections.


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/14/2009 5:47 PM (GMT -6)   
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.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 8/14/2009 5:56 PM (GMT -6)   
Romeo, I use the ring trick of pumping up slightly, applying a ring and injecting, then massaging gently for 3 minutes or so to get maximum saturation of the drug into the tissue inside the cavernous cavities. Works great, more effective erections, less drug used, less chance of the 5 hour erection and the trip to the hospital.

The Sudafed is used to offset the effects of the drug. I keep a pack of the real things, not the pheusado-eprenheprine (gloriously mis-spelled, I know) available. If my erection lasts longer than 4 hours, I will take 2 or 3 or 4, depends on how slow and how soft it has gotten then, it will kill the erection by neutralizing the drugs. It's saved a few trips to the hospital over the years. My doctor also told me that if the erection has reduced by half at the end of the 4 hours, that I probably don't need to go to the hospital, as there is enough blood transfer to not do damage. That's my doctor, so don't base any decisions on mine, see what yours says. Now then, once you are done and want it to subside, don't stimulate it in any way. Don't even touch it if you can help it. Any stimulation probably will start it growing again, at least somewhat, wiping out any reduction you may have made. There- about all you want to know about drug induced erections. Don't we cover a wide range of subjects here? tongue
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.10ml 2X week continues
PSA's: .04 each test since surgery


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/14/2009 6:04 PM (GMT -6)   
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. 

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/14/2009 11:59 PM (GMT -6)   
Romeo, welcome.

Your Mexican restaurant story is priceless. Pity you didn't lean over and say to her, "the hot sauce here really has a kick to it!"

Reminds me of Mae West, "Is that a gun in your pocket, or are you just glad to see me?"

I know that at the time there couldn't have been anything funny about it, so it's good to see you finding the lighter side of it now.


Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/15/2009 12:13 AM (GMT -6)   
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.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/15/2009 1:48 AM (GMT -6)   
 
My buddy Les said...
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.
Les I did not have progression in the nodes (10 were tested).  Everywhere else I qualify very well.  My surgeon said my stage was 3b after surgery.  But I am indeed very high risk with positive marins or seminal vessicle incolvement, and extraprostatic extension to the rectum...Forget the 4+3=7...Typically stage 3 and above is high risk.  So is Gleason 8 or above any stage.  
Here's the good news.  I have an undetectable PSA!
 
Tony
 
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/15/2009 6:37 AM (GMT -6)   
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)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/15/2009 7:43 AM (GMT -6)   
My new radiation oncologist doctor also through this out, whatever you are labeled with a Gleason number, treat it and act as though it were one number higher. He agreed with me, that a lot of Gleason 7 patients down play the seriousness of their situation, and that he thought Gleason 7's should never watch and wait, and that that 7 can qucikly become 8s and higher, even over a few weeks or months.

Romeo, the Sudafed is an antihistimine, same thing you could use if you were allergic to insect stings, helps the prolonged errection to ebb off and return to normal side. The guys that have had to go to the ER with mega hours long boners don't seem to have a good time.

Think you have gotten some excellent advice here about the injections. Good luck.

david in sc
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Romeo
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/15/2009 12:45 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


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 8/15/2009 1:09 PM (GMT -6)   
Romeo, our specifics are in a signature file. To create one, click the Control Panel button, next to the blue Log Off button above and on the left side. Then find and click the Edit Profile tab at the top of the screen that opens. Scroll to the bottom of this screen to the signature sections and fill out a concise stats and info , save it and the next time you post, it will include your new signature. As things progress, you can go back and update it so we can see how you are doing.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.10ml 2X week continues
PSA's: .04 each test since surgery

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 2:36 AM (GMT -6)
There are a total of 3,004,534 posts in 329,153 threads.
View Active Threads


Who's Online
This forum has 161744 registered members. Please welcome our newest member, csorthofeet.
235 Guest(s), 2 Registered Member(s) are currently online.  Details
SoMuchFun, Hibee