How do I find subjects?

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Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 9/14/2009 3:28 PM (GMT -6)   
No, I'm not a weirdo - so don't get weirded out. I have recently launched my site, www.franktalk.org. It is just a forum at this point, but I am working on the next phase which is to have a page dedicated to each of the modes of treatment of ED. One of my goals is to find very complete and graphic videos for demonstrations. If you go to www.trimixgel.com, you can see a perfect video on how to use that product.

If you read AstroNerd's (Chris) story about being sent home with a script and no training, his story is exactly what I want to avoid. I am hoping to find guys who use injections as well as pumps and implants. I want to have a clinical video of showing exactly how they work, the right techniques or even various techniques. I would like to videotape them with voiceover dialogue to keep it as clear as possible. Great idea, huh?

Now the hard part. I am having a hard time finding guys willing to make the videos. I totally understand the fear or apprehension, but any ideas out there on how to find subjects? I don't want to advertise on the internet cause who knows what I would get. I am next going to contact my urologist to see if any of his patients would be willing.
thoughts?
Paul
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.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/14/2009 4:20 PM (GMT -6)   
Interesting question. AS far as I can tell by extensive searching, there's no real demo's of injections, just one of a pump use (the Encore site?) , so it appears that finding a willing subject is gonna be the way to go. Sorta like the implant site that shows before afters, but with video rather than still photo's of the injection process.
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
24 mts: ED- 50 mg Viagra 3X week, pump daily,
Bimix-30/1/20-.20ml 2X most weeks continues using plump and ring technique
PSA's: .04 each test since surgery


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/15/2009 2:15 PM (GMT -6)   
Bring your camera to the Getaway. Who knows, you might get a volunteer. Not me. I'm just sayin...
If you make an educational, instructional video for a non profit, I figure you can write off the whole trip as a deduction.
Hey, isn't it reasonable to estimate that 1 out of 6 male IRS agents will get PCa? I think we need a ruling here and I'll bet there's one or two on this site.

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 9/15/2009 2:27 PM (GMT -6)   
LOL. I know this seems sort of strange on one hand, but part of my mission - and what is making me more militant as I delve into this whole topic - is that there is a fear of this whole subject which goes FAR beyond normal modesty. There is almost an element of shame. The men i have talked to about this stuff seem so relieved to finally be able to talk about it openly. Guys with ED did not do anything wrong to get it. They should have no embarrassment about it. Heck even seeing some guy demonstrate how to use a pump, inject himself or how to operate an implant is simply not that big a deal. I have been looking for videos online for so long, that even the **** videos I stumble upon look clinical! LOL. We are all made exactly the same way. After a while, it all looks the same. It is simply no big deal.
Paul
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.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/15/2009 2:44 PM (GMT -6)   
Sad but true. Although at least some of us manage to make fun of the situation. Honestly, I have not told the guys I work about my situation. Am I ashamed? Nah... I just don't want to be the center of discussion.
That's the beauty of your site and this one. I'm not embarrassed at all to tell you that the only thing I get "pumping for willie" is urine. You know exactly what I mean and even get a laugh out of it. And so do I!

I think it takes guys a while to get used to talking openly about this subject. It is much easier with strangers.

When I watched the instructional video that came with the Augusta VED pump it gave me the creeps. Heck even the woman on the cover with the satisfied smirk gave me the creeps! I can't image what I'd do if I saw an injection.
Probably pass out!
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
----------------------------------------------
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. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
----------------------------------------------
One Month Status:
Potency - 9/7 7 weeks Still no activity
Incontinence - 8/20 3-4 full pads per day
9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea, I know)
Post Surgery PSA - 9/3 6 weeks - 0.05


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/15/2009 2:53 PM (GMT -6)   
Ok, so don't volunteer for injections, how about the Nascar style pad change ?

This really is a great question, and certainly there must be some instructional videos out there for some of this stuff. It's just as men, it kind of creeps us out to think about it.
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 due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be 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)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/15/2009 3:02 PM (GMT -6)   
The NASCAR pad change is a different story. The trick is to reach in from the front, grab the far side of the pad and let 'er rip. (And let the other guys in the bathroom think you're CCW and packin' heat.)

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 9/15/2009 4:57 PM (GMT -6)   
Believe it or not, there are almost NO instructional videos. There are a few floating around of poor quality. They are also less than really specific. It's as if they struggle with wanting to show things...but ashamed to show things. very odd. So, I want clinical videos that are slow, very specific, graphic and fully explanatory. I keep thinking...surely there's some man out there who is completely impotent who might love to have a new career as a male adult movie star@ LOL
Paul
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.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/15/2009 5:09 PM (GMT -6)   
In this week's issue of the Economist, Sept 12-18, on page 35 there is an article entitled: "Hard Times - A big industry in northern Los Angeles is among the worst hit by the recession."

They describe the pricing structure and how "Men are worse hit. If they averaged $500 for a straight scene in 2007, they are now lucky to get $300."

I guess I'll have to keep my day job.

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 9/15/2009 10:37 PM (GMT -6)   
Paul:

Did you have in mind that these would be self-shot (amateur) videos, or were you thinking of using a real cameraman, in a (semi) professional situation? In which case, there is the logistics of getting all parties together for the shoots.

If you were thinking of amateur, what resolution do you want? Obviously the video would need to be shot in strong light but within the limits of the current crop of home digital video cameras. If you intend the video for viewing on the the web, the lower quality of home equipment should still be plenty good enough.

If someone provides you with the raw video, do you have someone to do the editing and voiceover?

Just a few thoughts about the practicalities -- knowing a bit more about what is required might encourage someone to come forward.
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.


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 9/16/2009 5:34 AM (GMT -6)   
Good questions. All along, I have been planning on amateur video work. My web designers are able and willing to do the editing - that was one of the first questions I asked them during the interview! The resolution only needs to be high enough so that things can be clearly seen on the computer. For example, when it comes to the actual injection we have to be able to see the needle...not a pixilated blur. A tripod would be needed to avoid shaking images. There is nothing erotic about any of this. It's a lot of hurry up and wait while camera angles are adjusted. Again, Trimix gel video is a perfect example of what and how I would do it.

For Injections:
I have a story-board in the making (after all, I do produce theater) which would take a guy through the entire process of preparing, administering and post injection. I would view the injection from frontal, but also from above, since this is the angle a guys sees it. I would then do a time-lapse so there is a sense of how long it takes for results. I would do voice over so no one would need to talk. Face shots are the last thing I want since I would prefer it to be mostly close-ups of the subject, as it were.

For pumps:
A video of the whole process again, preparing the pump, the ring, the actual pumping with time-lapse, putting on the ring, and then being ready for intercourse. Then how the ring is removed. There are many guys who find the thought of even a pump to be overwhelming.

For Implants:
A simple demonstration of inflation - views of how normal it looks - then deflating it.

I would also like to find guys who use MUSE. I have found videos of Intraurethral Trimix - got them from the DR who invented it.

My buddy, who is my family DR. would let me use his office after hours, but on the other hand, we would get better results in a home-made studio with better lighting conditions (Simple clamp lights) and black fabric background for clearer vision.

All in all, I would prefer older guys, not too enormously heavy so there is no belly in the way, but average middle aged/senior body is fine. Also, no one too well endowed since that can be intimidating. But heck, most of us after surgery do not have to worry about that!
I will probably have to have a demo of how to shave/trim hair for all of these modalities as well. Gee, videos for everyone!
thanks
Paul
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.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/16/2009 8:59 AM (GMT -6)   
"There are many guys who find the thought of even a pump to be overwhelming. "

What I find overwhelming is the sizes of the tube! That Augusta is 8.5 inches long and 2.5 inches in diameter. What are they trying to enlarge? My left leg? Jeez, a 12 oz mustard jar is plenty.

Make sure to bring your camera. Can't promise you'll get instructional videos but I can promise you will get some fun stuff.
Jeff

Post Edited (Worried Guy) : 9/16/2009 9:02:26 AM (GMT-6)

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