One year post: My, how life has changed. Thanks Guys!

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Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 7/16/2010 8:15 PM (GMT -6)   
Today, I got my One Year PSA. Two readings actually: A 0.03 on the Siemens Centaur using direct chemiluminometric, 06-2006 protocol, and a <0.01 on the Roche Cobas 601 electrochemiluminescence ELISA using 04-2010 protocol.

A year ago my surgery was a few days away. I had no idea how life changing this would be. I was in perfect health, kidding with family, confident that I would be dry and hopping between the sheets like the bunnies in our garden.

Sure, I saw the letter from the Uro telling me what to expect but it also said to expect vomiting, brain damage, psoriasis, nose bleeds and death. Oh puhleeze! That nonsense is for the old guys who are out of shape. The ones who smoked, and never exercised. The overweight tubs who can't move anyway. None of that will happen to me. My BMI is right where it should be. I am in perfect health. I can outrun guys half my age. I will breeze through this.
Well, the only things I breeze through now are pee pads.

As I sit here with an almost full soaker twixt my thighs, contemplating whether or not Trimix is worth the effort, I realize I am lucky. My PSA is low. <0.01. The lab report brought tears to my eyes. Not sure why, but I started singing: "I am I, Don Quixote! The Lord of La Mancha!... " Why? Fighting windmills - delusional that PC is gone? Or maybe it was just a reaction to an over-ripe piece of goat cheese I had for late lunch.

I know that I have been enriched by this experience. I learned about cell mutations, cytology, physiology, genetics, drug interactions and an alphabet soup of treatments and protocols. I learned that life is precious and there are truly great men here walking with burdens I cannot fathom.

I'm a technical guy - a physicist/engineer and think I have a reasonable understanding of how the world operates. Who knows, with all the equipment and serendipity flowing in my lab I might come up with a next generation treatment. At the very least I can now cook a hot dog faster than Kobayashi, the Tsunami, can eat them.

Most importantly, the guys I met here have added to my life more than I can say. You know who you are. "I love you, man!" sums it up pretty well. And I say that totally sober!

PCa has made me a better person but I'd be lying if I said I don't miss dry pants and a spontaneous roll in the sack. Don't worry, I will survive!

Jeff

Humor is GFMPH. (I hope you clicked the links.)
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05,
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)

Post Edited (Worried Guy) : 7/17/2010 7:09:28 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/16/2010 9:03 PM (GMT -6)   
Jeff, congrats on the one year reading. I agree with your sentiments of the good guys/gals here at HW Prostate Cancer. You have been a great asset here yourself, and always look forward to reading your posts. You and I are on opposties ends of the Wet vs. Dry problem. You can't keep from leaking and I can't keep from stopping up, too bad we can't help each other with a portion of our problems and call it even.

David in sC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 still in place


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 7/16/2010 10:07 PM (GMT -6)   
Jeff, My friend I agree with you so very much. I am very lucky to be where I am today in the PCa stuff. Sure it would have been better never having to know about all this stuff but looking at the big picture. I have been one of the lucky one in treatment and I have had the chance to become very good friends with you and several other PCa brothers.

I am looking forward to the GFMPH weakend in September.

Thanks for being here on HW.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1 pre cancer core
10/08 Nerve-Sparing open radical
Surgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clear

3 month: PSA <0.1
6 month: PSA <0.1
10 month:PSA <0.1
1 year: PSA <0.1
16 month:PSA <0.1

ED - Started Cialis at 3 months, tried all 3, 6 months added pump, 9 months Tried MUSE (YUCK) Bad experience.
1 year mark Found new Urologist visit was at 14th month post surgery
Started Injections, Caverject! (Success)
17 month: ED making improvements : Oral Meds gets me 85%


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/16/2010 10:34 PM (GMT -6)   
Amen brother !
 
Been a wild ride, and probably don't even see the big wave coming in behind.
 
It's not whether we win or lose, but how we play the game.
 
The heros on here on are the ones who have kept their composure, and their dignity.  We are all in this game together.
 
Jeff, if the only thing I have gained is a visit to your ranch, and tried the pea gravel, and slept on a sleeping bag on your back porch, and talked a whole bunch about a lot of PC topics with you, then this journey in PC is bearable.
 
Thanks for keeping this thing real.  We could all sit around in self pity and wallow, or we can go forward every day, laughing when we can and savoring every moment we can.
 
So glad to hear about the ol PSA.  Oh, and yes, tri-mix is worth it, just not the same as before.
 
 
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/16/2010 11:22 PM (GMT -6)   
Glad to hear the recent good news and welcome to the ZERO CLUB. I like the pace of your post and want to tickle your brain "Mr. Scientist". (smiling)



If you follow the link below you will arrive at a page in our newspapers digital archives where an interesting new research effort is chronicled and made available to everyone on the Net.



http://www.news-press.com/section/kanzius



Ya, Ya, Ya I know. You and all of the rest of us now belong to a club we never wanted to join but non the less here we sit struggling to find a NEW NORMAL. My personal wish for us is simple. I hope we find it.



I think our efforts need to be seasoned with a little humor so I find your take on things nice reading and thanks for taking the time to keep us up to date.



Jim
Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.

Post Edited (maltratado45) : 7/17/2010 12:59:14 AM (GMT-6)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2211
   Posted 7/17/2010 12:37 AM (GMT -6)   
Jeff,
Glad about that PSA news.

I'm also starting to feel philosophical about what I/we have been through and are still going through as I approach the one year anniversary of that conversation with the anaesthetist that finished half way through. But I've not yet woprked out how to sum it up in words.

Alf
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak
June 27th My 50th Birthday - feeling better but still not 100% okay


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 7/17/2010 6:11 AM (GMT -6)   
Jeff, congrats on the one year PSA results.

I am right there with you on the timeline. It totally escaped me that while I was traveling with my wife the last few weeks, I passed the one year mark since my diagnosis.

Amazing how much has happened in the last year. I am totally aware of an entirely new vocabulary that never had entered into my speech patterns before. My diagnosis came just 3 days after my wife was admitted into the hospital into what would become a 9 weeks stay. She is referred to as "the miracle" whenever she returns there, for she should have never come back from where she was while in ICU.

Yes and like you I have a new outlook on things and the future. I have experienced the surgery, the IMRT and now the METS. Yet I have been dry since day 1 and that has been a blessing. ED is still an issue, however given my wife's physical condition it is not something that weighs heavily on me. In that I am also blessed.

So it has been a year for me also. I still believe "Every Day is a Bonus", and we are living them to the max.

Most of all my life has been blessed by meeting and coming to know folks like you and the others here at HW. You folks have provided me with much more support than you will ever know. This is a journey that I would have had great difficulty with had it not been for you folks.

And now I see another blessing in the future. Jeff (Corvetteman) has told me that another GFMPH weekend is in the planning for September. My wife and I have planned a trip to the northeast for the fall and would love to start it off with a trip up your way.

Jeff, thanks for being here and thanks for your posts. To this day my wife and I go into uncontrolled laughter remembering your post about the Pad Quick Change Routine.

I salute you in your one year anniversary and wish you many more,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -scheduled
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2215
   Posted 7/17/2010 6:20 AM (GMT -6)   
Great report and great post Jeff. Was it James C. that maid our official song "Better Man" by Keb Mo. Your a better man today, just minus the dry parts.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 7/17/2010 6:29 AM (GMT -6)   
Congratulations Jeff,
Always great to hear of another "0", especially one a year out with a pT3 tumor. The attitude you share with so many of our friends here is a huge help to those of us in fairly early recovery.

Here's to many more
Dave in Durango CO
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04 06-07-10 PSA <0.04
05-03-10 1 week without pads


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 7/17/2010 7:04 AM (GMT -6)   
Guys,

Thanks for your well wishes. See? This is why I love this site! To wake up and get mail that makes my heart beat faster and my eyes tear up. Is it my imagination or is this coffee twice as sweet as usual?
David, Jeff, Dick, Jim, Alf, Sonny, Michael, Dave... Glasses of water all around! I'm buyin'!
Jim, You even gave me a homework assignment.

James C put the GFMPH retreat on the official HW calendar. That just made all the related expenses tax deductible. Yep I'm sure of it... This coffee is sweeter than usual!

Jeff

Post Edited (Worried Guy) : 7/17/2010 7:12:09 AM (GMT-6)


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 417
   Posted 7/17/2010 7:15 AM (GMT -6)   
Jeff,
Congrats on your one year report and finishing your one year journey with a great sense of humor and optimistic attitude.
I will pass two years since RP this month. Have a new sense of optimism that I will be dry in five weeks when my aus will be activated. Willie and the "poor boys" have been through a lot from RP to Sling to AUS but they seem to be handling it pretty well even though they are still a bit swollen.
Hopefully you will find a fix faster than I did but knowing there is a fix waiting should give you encouragement.
We are all lucky with where we are and to have the great support of this group.
Cheers to you and all!
 
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Incontinence & ED. Dry nights , no control during day.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Virtue sling surgery 2/3/10 NYU med center
Appeared to help but gradually returned to pre surgery condition.
Back to 3-4 pads/day.
Latest PSA 4/1/10 negative.
AMS 800 artificial urinary sphincter implanted 7/8/10 at U of MI.
 


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/17/2010 8:24 AM (GMT -6)   
I'm glad you noticed WorriedGuy. I thought maybe if I tickled the upper cells maybe the lower ones would come along for the ride. smilewinkgrin

Oh and by the way, the test is next Wed. 9AM sharp and don't be late or it will count against your grade and you may never pass. You may even have to repeat this block of instruction, ugh.

Jim yeah
Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.

Referred to Urologist. Biopsy and bone scan in Oct 04.

Pathology report in Nov 04. Initial Results are T2cNoMo carcinoma of prostate gland.

Had a RPP on 14 Feb 2005. Boy talk about irony look at that date again.

Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.

"I wish to apologize because I misdiagnosed your condition.

Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."

At that moment I fell in love with my Dr. and have never changed my mind.

Followup radiation of the prostate bed started early June 05 and ran 42 sessions.

All PSA checkups to date, 5 1/2 yrs, are undetectable.


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6888
   Posted 7/17/2010 8:43 AM (GMT -6)   
It will be later this month that I get the "official" post-IGRT PSA - almost one year to the day that the GP sent me off to the urologist the first time.
Didn't find this group of characters until after surgery, so a lot of my experience is learned the very hard way.
The support is great, but the leaking continues. Guess I'll be around a while. Now you've got me looking up for that disco ball -

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 7/17/2010 8:50 AM (GMT -6)   
Jim,
I noticed he used a hot dog too. By doping the area with something that absorbs a certain wavelength his method puts the heat where you need it. On the tumor. The problem is you need to get the dopant into the tumor. That is a procedure in itself. Radio waves are large and are not easily steered unless you have a large antenna.

I'm am rethinking the problem. Something along the lines of 20 watts of 78 GHz delivered via a 4 mm wave guide. I'll have work on the math ...

Just a second... I just looked down in my pants. Nope. The lower cells are still all relaxed and floppy.


Hey 142
Glad you found it! I even found the words fitting if you picture someone singing to their removed prostate. The disco ball should have 0.2ng/ml written on it.

Jeff

Post Edited (Worried Guy) : 7/17/2010 1:18:25 PM (GMT-6)


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/17/2010 10:10 AM (GMT -6)   
Please all be advised of the following. The link I sent above is actually a large hyper link with a significant amount of information standing behind it.

In reference to the dopant, I was of the understanding it was gold nanoparticles which would seek and find the cancer.

Quote: News-Press: The treatment has the potential of being a milestone in cancer care because of its noninvasiveness — no needles, no surgery, no radiation — because it targets just the cancer cells and because, it’s believed, the radio waves and gold nanoparticle solution are nontoxic.

The basic link again: http://www.news-press.com/section/kanzius

Do you guys and gals think it advisable to start a new TOPIC?

Jim
Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.

Referred to Urologist. Biopsy and bone scan in Oct 04.

Pathology report in Nov 04. Initial Results are T2cNoMo carcinoma of prostate gland.

Had a RPP on 14 Feb 2005. Boy talk about irony look at that date again.

Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.

"I wish to apologize because I misdiagnosed your condition.

Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."

At that moment I fell in love with my Dr. and have never changed my mind.

Followup radiation of the prostate bed started early June 05 and ran 42 sessions.

All PSA checkups to date, 5 1/2 yrs, are undetectable.


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 7/17/2010 10:36 AM (GMT -6)   
Jeff,
Hey! Congrats on the numbers. you're right. PCa was a bummer to get. But my life is better, strangely enough, in so many ways. Yeah, the physical stuff is a pain, but the overall healing experience was a gift. The guys I've met throught the whole ordeal are some of the best guys in my life - you included.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 672
   Posted 7/17/2010 11:42 AM (GMT -6)   
Hi Jeff,
 
Congrats on the PSA!
 
I haven't been here much for some time, but when I am, I always have a look in at your posts. Love your humour and very much appreciate it. Having a similar background, I always get a good smile and laugh from your technical approach.
 
I hope you start seeing some really good improvement on the IC front.
 
Stay well. 
-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 


Burlcodad
Regular Member


Date Joined Nov 2009
Total Posts : 254
   Posted 7/17/2010 12:18 PM (GMT -6)   
Jeff
 
Congrats on the great news and great post.  I just passed the six month mark of surgery - psa test next week - and I look back at where I was a year ago pre PC but more about how far Ive come in the nine months since I found this place. 
 
Ray
Diagnosed 9/09 at age 54  
PSA 6/09 1.3 
Stage 2b (biopsy done because of firmness felt on right side) 3 positive cores out of 12 (all less than 25%) Gleason 6
 
Surgery  1/13/10 at UP- Penn Presbyterian - Dr David Lee. Home 1/14/10 Nerves spared on both sides -Catheter removed 1/19/10  Path report scheduled for 2/11/10
 
Post OP Pathology Report Gleason score was upgraded to 7 (3+4)
no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, gland involvement 2-10%
 
Since report was good and recovery going well next appt is now  the first psa test appt scheduled for 4/22
 
POST OP PSA   4/10 <0.1,
 
Incontinence - Initial 6 pads a day, 3 Weeks - 3 pads a day relatively dry at night , 3 Months mostly dry 0-1 pad per day
 
ED - yes but seeing some improvements - levitra 10 mg 2x week 3 months  100 mg almost daily
 
 
 


Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 7/17/2010 4:48 PM (GMT -6)   
Jeff, You have got my vote for the post of the year award..................Cheers Kev
Age 52yrs
6 out of 8 cores positive 3 X 60% / 3 X 10%
PSA 4 Gleason Score 3+4=7 Stage T1c
Robotic Surgery 24/12/08
Upgrade Gleason Score 4+3=7 Gleason Differential 60%/40%
Stage T2c Three small foci total volume <10%
Neg Margins and Nodes
Nil - Extraprostatic Extentions
Dry less than 1 week. ED- okay with Meds.
PSA at 18mths no change remains 0.03
"Everyday in Everyway I get better"


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 7/17/2010 10:18 PM (GMT -6)   
Hi Jeff,

I love these milestone posts. It is very important for the rest of us to know how you're doing, regardless of the progress made.

Congratulations to you! You sound like you're in great shape for the most part.

I hope your healing process will turn out to be all you have hoped for.

Kind regards,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/'07 <0.04; 12/'07 <0.04; 03/'08 <0.04;
06/'08 <0.04; 12/'08 <0.04; 06/'09 =0.06; 09/'09 <0.04; 12/'09 =0.05;
3/'10 <0.04; Latest PSA 6/'10 <0.01


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 7/18/2010 6:45 AM (GMT -6)   
Jeff
- congrats on the continuing on the zero club status and anniversary date
- sorry to hear no improvement in IC section - glad to see you like disco and musical theatre
- my kegel routines were tuned to ROCKY HORROR PICTURE SHOW "time warp dance"
- maybe a touring company of HW kegel-dancers could help speed up your drying? ...
all the best.
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night - May 25 - 1 pad during day - 1 pad at night for security (barely needed at all) - stress incontinence at work - lifting trees and shrubs...
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 7/19/2010 12:56 PM (GMT -6)   
Guys,
You really made my day. I was tied up all yesterday with a family obligation and could not respond properly. Now that I am back at the PC (and taking a break from a project) I figure I can answer properly.

Tallguy- It is I who should be thanking you. You are blazing the path for us leakers. "Willie and the Wet Boys" is more like it.

142- I'm glad you stuck around to see the disco ball. For some guys it has "0.2" written on it. My ball had "17.8" printed in bold letters.

Paul- What can I say? I love ya' man! My life is richer knowing you. And thanks for the furniture advice!

Mikey- Some day you will have to visit. Heck, you are just on the other side of the lake. You can probably see the flash from some of my experiments right from your front door.
Maybe I'll send an Iridium Flare your way.

Ray, The next 6 months will fly by- honest. Somehow our brains seem to forget the bad stuff. Good thing or we'd never go to the vet Uro again

Kev - Thanks I didn't know there was an award going. I'm honored to just to be in the running. ;-)

Barry - Yep, I am fortunate. I am in great shape except for those two minor, pesky problems of incontinence and ED. But I'm still working on both.

Bronson - Oooo, I like the idea of the Time Warp Dancers.
It's just a jump to the left, And then a step to the right.
Put your hands on your hips, and put your pad on tight.
But it's the leaking crotch that really drives you insane.
Let's do the time warp again.
You really should come to my place in Sept. Festival season will be over and the only landscaping going on is putting down fresh "pee" gravel. Heck, your place is within rocket range too!

Thanks guys!
Now back to work.
Jeff

Let's do the time warp again....

Post Edited (Worried Guy) : 7/19/2010 12:59:24 PM (GMT-6)


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 7/19/2010 1:14 PM (GMT -6)   
Jeff, you sound it really great spirits this afternoon and with your scores who wouldn't be.

I have spent the better part of the day exploring for campgrounds near you. Lynn and I are definitely planning to stop by in September for the GFMPH celebration. Our plan is to come up and visit Niagra first and then stop by your place on the way to Boston and north to Bar Harbor and points in between.

Looking forward to meeting you in person, especially after my discussions with Corvetteman. Looks like he is planning on the trip as well.

I'll drop you an email in a few days,

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -scheduled
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 7/19/2010 1:38 PM (GMT -6)   
Sonny
That is great news! Camp Grounds?!? What do you need? Water, electricity, isolated spot in the woods ? We've got it all right here. You guys could park your rig in one of our clearings for a month or two and be better hidden than the Unabomber.
Come any time. We really mean it! I'm sure Cajun Jeff will confirm that.
Jeff

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 7/19/2010 1:57 PM (GMT -6)   
Jeff, sounds good to me. I was thinking that maybe you wouldn't want me dumping my tanks on you pee gravel area though. Really I was thinking that maybe Lynn might not want to join in on all the "Manly" activities and could just rest up. Also wasn't sure how many of the other spouses would be coming and she doesn't want to put the damper on the guy bonding thing.

You and I will talk and work it all out through email.

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
Gleason Score (3+4) 7 in all positive cores
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy

2/24/10 FIRST POST RAD PSA 1.0---CARRRP --waiting for the next test.
3/22/10 Second Post RAD PSA 1.5 Dammmmnnn stubborn son of a gun
4/19/10 YAHOO PSA dropped to 1.2 Moving in the right direction.
5/7/10 PSA test 1.3 Sodium Fluoride PET Scan & CT SCAN -scheduled
5/20/10 PSA test 1.2 Holding off on future tests for 3 months- single lytic lesion found and scheduling radiation.

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