Group meeting of PC survivors

Location GFMPH weekend
4
Atlanta - 36.4%
0
Chicago - 0.0%
0
Orlando - 0.0%
5
New York - 45.5%
1
St. Louis - 9.1%
1
Wash DC - 9.1%

 
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goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/13/2009 9:37 PM (GMT -6)   
James C.
Is there a way of setting up a thread that people can post to kind of like a survey ?  I'm thinking about offering 2 or 3 location choices, and 2 or 3 rough dates and have guys respond so that we can come to a consensus.
I am thinking like Atlanta, Chicago, maybe St. Louis would be able to reach most eastern guys with good airports, transportation, etc.  Florida is not out of the picture in the colder months.  Iam certainly nit against a western venue, perhaps someone out in Las Vegas for instance could organize.
I think late fall like early November would be good, or if a winter break is what we are looking for, maybe Januaty.
Am thinking of getting a decent hotel with some meeting rooms depending on response.  Maybe have a guest speaker or 2 , but mainly just time toigether shooting the breeze, eating, maybe even invite some vendirs to help defray expenses.  Maybe have some j=kind of fundraiser for PC awareness.
Depending on city, and time of year, have some local tourist kind of excursions available.  Tony's comment was something abiut tagging on to another PC event in LA.  Maybe we could find soemthibg out east that we work around.
Anyone with ideas, post them and let's get this ball rolling.

Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
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)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/13/2009 9:40 PM (GMT -6)   
James C.

I found the Poll option Cool !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
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)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/13/2009 9:46 PM (GMT -6)   
On the 21st, 22nd in Washington DC...

National Summit for Zero - The Project to End Prostate Cancer is meeting at the Capital Hill Hotel I will be there, heaven permitting.

Here's the link:
http://www.zerocancer.org/site/PageNavigator/PRO_Summit_to_End_Prostate_Cancer


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!


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4823
   Posted 8/14/2009 4:38 AM (GMT -6)   
Food for thought for your adventure:
 
Pick a month when there isn’t ANY snow on the ground anywhere to avoid flight cancellations.

Dallas is smack in the middle of the USA and works really well for me turn
 
I guessing a large hospital in a large city might help out with conference room for next to nothing and they have access to lots of speakers and all the needed items for a conference.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 8/14/2009 6:42 AM (GMT -6)   
I took the poll, least the thinking is in the right direction. We owe our selves something for all our troubles and ordeals
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
 
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/14/2009 8:01 AM (GMT -6)   
Wow that is great!!! I wish there was more than one choice NY, DC Atlanta are all great.

By the way. Just throwing this out there. I live outside of Rochester NY about 1.5 hours from Niagara falls. We can easily host 20 or so campers on the property with parking for at least 50 cars. I can even dig up enough hoses and extension cords if you needed hookups. We are near Lake Ontario's Braddock Bay, one of the best birding sites in the country. Kayaking and canoes can be rented at a place 3 minutes away. We have first class dark sky if you are into astronomy. You can visit Charlotte Beach 10 miles away or do the tourist stuff in Rochester: Science center, Strong Museum, George Eastman House. The wives can go their own way too. We can do a big bonfire in the orchard out back, and partake of any bubbly that suits your fancy. Very relaxing, low pressure and it's free!
Hey goodlife - I have a messy shop in the basement were we can work on inventions like the Supersucker IV (TM)!

Seriously if anyone wanted to use my place as a home base or a pit stop I'd be honored. I hear that sitting in front of a campfire is GFMPH.
Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and 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
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX

Post Edited (Worried Guy) : 8/14/2009 8:09:10 AM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/14/2009 8:03 AM (GMT -6)   
I'm OK with going to Washington and the Zero conference. May be able to stay outside the beltway, and commute in. $200 bucks a night is little higher for a budget, but for one night, and for a good cause, we could start there. Maybe we could move out in the burbs for the weekend or something.

Maybe Jeff could get the VED guy to sponsor us. Or maybe Senator Dodd could find some stimulus funds ( for you ED guys) to help us.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
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)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/14/2009 8:57 AM (GMT -6)   
Goodlife,
When I stay in DC I stay at Inn of Virginia. in Falls Church. Cost is ~99. I take the Metro in. Falls Church is a nice area and there are lots of fun restaurants that are within walking distance. Not a bad choice. And who knows, we might actually learn something.

I'm thinking of renaming Supersucker IV (TM) to "Stimulus Package". Think that will fly?

Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and 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
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/14/2009 9:57 AM (GMT -6)   
I don't want it to fly, just stand up and be counted !

I was also checking Baltimore, Fairfax, and Falls Church. If you check out the Zero conference post, it might be fun to spend a night there, and then move out to the burbs.

I think Rochester would be great too. Makes the timing a little more critical, but certainly end of September is doable. Snow's not too deep by then !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
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)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/14/2009 10:26 AM (GMT -6)   
And I just want it to stop leaking!

I wasn't thinking of an either/or event. I'm just offering my place in addition, any time - like if someone was driving around this weekend, come on over. It's real easy for us. We're kind of informal. Can you guess?
You know Rochester weather well. Since we are near the lake, the month of October is still pretty nice. The orchard is full of apples. The bonfire is warm and toasty and there are enough downed trees and branches to keep it going for days. Also if you are a bowhunter, you can get deer from the comfort of your own trailer - we have plenty! (I'd have to check and see when bow season starts).
I also have a spare bedroom with a twin bed in case anyone does not have a trailer or camper.

I'll look at the Zero Conference material now and see where they are suggesting.
Can I write this off as a Medical Expense? ;-)
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and 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
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/15/2009 11:12 AM (GMT -6)   
We are thinking of having a pre-GFMPH gathering organizational time/planning session/BS session/campfire in the woods time in late September at worried guy's place in Rochester New York.

For those close by, camping is available on the property. Hotels are close by for those that choose not to camp. I am sure we can even run some shuttles in to get guys if they fly in.

Probably based on the camping thing, we will make this one stag.

Just checking interest at this point. If anyone has feedback, or comments, or questions, email me at lemsco@aol.com.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
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)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/15/2009 1:06 PM (GMT -6)   
I believe that you can write off travel expenses when attending the Zero conferences. Your registration is considered a donation. I haven't done it before, but my work with them is considered charitable, and they are a 501(c) 3...

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!


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/15/2009 2:24 PM (GMT -6)   
I like either New York (Rochester included) and Wash D.C. I vote for New Your.

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 672
   Posted 8/15/2009 2:58 PM (GMT -6)   
I don't mind Rochester. I can paddle my canoe there. It's only one lake over. Coast Guard might give me some grief, so I'll drive instead. Atlanta's fine, too. I'm open. Just the idea of being able to meet some of you is fine with me, regardless of location.
 
Mike
-Hernia, mesh and large scar, surgery early 2006
-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.
-Bone scan Dec 08: Negative
-Barium enema X-ray March 09: Small diverticulosis
-MRI with endorectal coil (April 09 as part of a study)
-3D advanced TRUS (April 09 as part of a study)
-CT (April 09 as part of a study)
-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.


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 8/16/2009 7:02 AM (GMT -6)   
Since I'm nearby and would like to attend the ZERO conference, I voted for DeeCee.
62yo
V10.46 Dx Feb-09
RRP 5-5-09
No adverse SE
PSA 6-19-09 -0-
 
Thriving, not just surviving!
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 8/16/2009 7:11 AM (GMT -6)   
WHoa, I just realize something horrible. I can't go to any of these gatherings :( With my appearent reaccurance, I am no longer in the Zero Club. Haven't been since my 6 months PSA. That really depressed me, I have no reason to celebrate with any of the zero club guys if they meet. I will have to wait and see if I ever qualify again. sobs.

I was hoping to qualifity for being on the most amount of catheters in one year trophy when you handed out awards. I am so looking forward to #7 when I wake up in recovery after Tuesdays surgery.

David in SC, president of the >.10 Club, so there
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
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/16/2009 7:14 AM (GMT -6)   
Where in the world did you get the idea it was a Zero club meeting? wink Unless I am really mistaken, it's for everyone, no matter what. You can spare a weekend, even in the midst of any potential rad treatment....

Are you gonna pull the little trailer all the way, where ever it is?
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-.05ml 2X week continues
PSA's: .04 each test since surgery

Post Edited (James C.) : 8/16/2009 7:26:58 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 8/16/2009 7:26 AM (GMT -6)   
james, from jacktech's post apart, I assumed the purpose had changed. I thought it was a pc survivor get together originally.

Would I pull the trailer, if it were under 500 miles and only if my wife came along, it's called "Cupcake" and its entirely pink and white, do you think I would really come in a pink trailer with pretty pink curtains to a group of men by myself, lol.

btw, the walking we did yesterday on our NC about wrecked me for the rest of the weekend, the last leg bag was pretty bloody, hard to believe 4 weeks after the dialation.

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
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/16/2009 7:32 AM (GMT -6)   
I think it's still everyone come, there'll be fellowship and planning for taking the idea to other regional sites, maybe in the spring, a series of them, possibility. Just an exploration weekend, still with the purpose of meeting, fellowship, and kicking back- wherever the meeting place is. Plenty of fun and things for everyone who comes to get involved in.

Pink and white,- shucks- after what we been through, we don't have any problems with self-image and masculinity, do we?

The next time you're in Hendersonville, if you want company, let me know. I'm just 100 miles north across the mountain...
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-.05ml 2X week continues
PSA's: .04 each test since surgery


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 8/16/2009 7:36 AM (GMT -6)   
Will take you up on that James. I wanted to go to Asheville yesterday but knew the parking situation and the steep hills would be more than I could handle. Hendersonville is flatter, and it still wore me out completely.

david
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
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/16/2009 2:27 PM (GMT -6)   
For the West Coast guys. The PCRI Summit is in Los Angeles at the Airport Marriot on September 11-13...I will be attending at the Prostate Cancer International booth...

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!

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