February 2010 Orlando Gathering of the PCa Brothers for GFMPH

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Veteran Member

Date Joined Aug 2009
Total Posts : 2448
   Posted 10/20/2009 7:39 PM (GMT -6)   
This is a copy of the original post about us gathering together in Orlando, February 2010, over Valentines Weekend. Many of the replies were lost in the 2 day down time we experienced at HW. Also many new folks have joined and the thread got pushed back so they may not have seen it.

So once again my brothers let's see a show of hands for those that think they can make it to Orlando. We are now down to 4 months and counting. Still a lot of work to do and arrangements to make. Sadly my house is not large enough to house all attendees. Neither have I been fortunate to hit the Florida Lottery to allow me to foot the bill. I am working though on great accommodations at a good price and arranging for some free to low cost outings, events and fun.

Come on it's gotta be getting cold up north, so I know you're more agreeable now than when the post first hit.


Here is the original post:

Are you interested in coming to Orlando for an extended weekend February 12-15, 2010? This would be a GFMPH gathering and Valentines Day celebration to include the loved ones that are so important to our lives and recovery.

There seems to be interest in getting together in the warmer climate of Orlando during the winter months. There were many of us who could not attend the recent gathering in New York for various reasons. The NY gathering seems to have gone over very well and those in attendance had nothing but good things to say about it.

I am volunteering to organize such an event in the Orlando area during the winter. Holding it over the Valentines Day weekend seems like the perfect time to do it. We need to celebrate our loved ones that give so much of their time and energy to help us through the whole PCa battle and long term recovery. There is no doubt that their lives are as greatly affected by PCa as is our own. Obviously this will not fit into everyone's schedule, but trips like this seldom do.

Based on your responses I will go out into the medical and business communities and try to get us the most assistance I can for such a worthwhile cause.

I will contract the MD Anderson Cancer Center here in Orlando for the possibility of guest speakers on a range of topics, as well as informative materials and videos. I will also make contact with the local PCa support groups for inclusion into our gathering. I know that for one we have a local chapter of USTOO and Man to Man.

Given the condition of the economy and the daily news of the lagging tourism dollars coming into the Orlando area, we may very well be able to negotiate some attractive lodging discounts.

I am looking for ideas and input as to what you would like to have included in such a gathering. One thing that I feel must be included would be a great dinner, music and dancing gala the night of February 13th.

And it goes without saying that this is not a one man job. So anyone and everyone is invited to jump on board by volunteering to be a part of this organizing committee.

But first things first; Let's see a show of hands for how many of you would seriously consider attending such an event.

I know that it's about 5 months away, but organizing something like this will take a little time and effort.

Let me know what you think,

61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero

Elite Member

Date Joined Oct 2008
Total Posts : 25393
   Posted 10/20/2009 8:02 PM (GMT -6)   

Peggy and I are already talking about coming. Will depend on my health of course, and a little bit of economics. So put us on the tentative list for sure.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.

Ed C. (Old67)
Veteran Member

Date Joined Jan 2009
Total Posts : 2461
   Posted 10/20/2009 8:56 PM (GMT -6)   
As I repleid to the first post, my answer is yes with an "IF". I have a PSA test scheduled for January, if I get a zero then I'm in.
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

Veteran Member

Date Joined Jul 2009
Total Posts : 1267
   Posted 10/20/2009 10:28 PM (GMT -6)   
Sonny, I doubt I'll be able to make it. The recession has sent our manufacturing business for a loop and while we are nicely coming out of it we still have a few team members on a four day week. As long as they're taking a hit it would be inappropriate for me to be heading to Florida for a winter vacation. Now, if you were gathering in Edmonton, no one would question, or resent, my going. But, who knows? By February business could be booming.

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"
First post op PSA Sept 09  0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week.    

Cajun Jeff
Veteran Member

Date Joined Mar 2009
Total Posts : 4119
   Posted 10/20/2009 10:28 PM (GMT -6)   
Sonny, just as the first post. Pat and I are in for the Trip. After Christmas we will be in contact to make room res. Did you mention if any of the hotels have blocks of rooms for HW group. If not we can probably get one to give us a bit of discount depending on how many people are comming.

Jeff T
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next

Veteran Member

Date Joined Feb 2008
Total Posts : 655
   Posted 10/21/2009 2:36 PM (GMT -6)   

Greetings everyone.  Sonny, once again thanks for iniating this idea.  I was sorry to miss the gathering in New York and am really looking forward to Orlando.  As I said earlier, I am attending a conference that weekend in Orlando and my assistant sent in my registration for that conference just today.  I'll be there from Thur to Tue and will be staying at the Marriott at the airport but will have a rental car to get whereever we may decide to meet. 

For what it's worth, the room rate I am paying is $129 but I don't think that is a very good rate - you know how it is with conferences, you pay a little more per room and they throw in the conference rooms for "free".  Not really.  Maybe that is a decent rate for Feb in Florida - if it is just let me know and I'm confident I can get it for others. 

My wife will be with me and we are really looking forward to this event - mainly meeting some of the guys who have been so helpful to me over these past months!  David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me

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