Orlando-GFMPH/Valentines 2010 Celebration R U Interested?

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 9/29/2009 7:11 AM (GMT -6)   
Are you interested in coming to Orlando for an extended weekend February 12-15, 2010? This would be an HW 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.

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,

Sonny
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%
ALL NERVES SPARED
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/29/2009 7:25 AM (GMT -6)   
Sonny, that we might be able to pull off. I can fly Alligant Air non stop from Greenville to Orlando, be there in an hour. Next Valentines day, it will be 36 years ago that I proposed to my wife.
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%, Contained in capsule, 1 pos margin
2009 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, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, mapping on 9/21/9, 9/24 - mtg & procedure? with uro/surg, IMRT starts 10/5/9


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 9/29/2009 7:36 AM (GMT -6)   
Fantastic my brother. My wife and I will celebrate of 27th on February 26th. I might be able to use this gathering to get out of some really expensive gift. Always thinking, that's me.

How are you doing today? Going to be able to hold out until Thursday?

Sonny
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%
ALL NERVES SPARED
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


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/29/2009 7:46 AM (GMT -6)   
Will Rosie and her girls be doing their ED workshop?

Florida in winter ???? --- almost sounds like a no brainer when you live in Winterpeg and it will likely be 30 below, or some such.

But, too big a recession right now to know if we'll be able to get away. If the metal gods send us lots of work, I'd love to be part of this great event. I doubt I'll be able though.

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"  


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 9/29/2009 8:00 AM (GMT -6)   
The agenda is just beginning to come together. However if anything comes UP it might be a good day to send the loved ones to the spa. Would ultimately be GFEPH (good for everyone's prostate health) by the end of the day.

So sad to think that you might not be able to attend. Maybe the economic gods will shine their light on you. You never know. But we will hold out hope. After all, hope and prayers are a part of our everyday language, aren't they?

Sonny
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%
ALL NERVES SPARED
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/29/2009 8:30 AM (GMT -6)   
Sonny, I will spring for the dancing girls, I mean the theraputic escort nurses again.

I believe I will make till Thursday, though yesterday, my flow was so limited and have severe bladder neck ache. Always starts out fine in the morning, gets worse as the day goes on.

At 2:30 today will be at pre-op at the hospital, getting ready for the big show on Thursday. Tommorow, is big interview day for me with a major defense contractor. Even though I am 100% dry, might wear a pad just in case, hate to blow it with a wet spot on my suit, lol.

Hope you are still pulling strong in the forward direction
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%, Contained in capsule, 1 pos margin
2009 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, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, mapping on 9/21/9, 9/24 - mtg & procedure? with uro/surg, IMRT starts 10/5/9


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 9/29/2009 10:18 AM (GMT -6)   
What a great idea. Put me down for the triip. Going to shine up the vette and bring my wonderful wife. May have to make a real trip out of this and take a ride to Key West after the workshop!!!!!!

Sounds like fun.

Jeff Travasos
Cajun Country
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


Opa N
Regular Member


Date Joined Sep 2009
Total Posts : 150
   Posted 9/29/2009 10:49 AM (GMT -6)   
Sonny,
Standing up here in Raleigh and waving both hands. Count the wife and me in.
Al the best.
Roger

 

Age 67 at diagnosis. Treated for coronary artery disease (CAD) since 1998, and under control with medications.

2/6/09          Routine physical, with DRE and PSA Test. PSA 4.02. Referred to Uro

4/20/09         TRUS  w/needle biopsy

4/23/09         Diagnosis PCa with Gleason 4+3 in 2/2 cores, Gleason 3+3 in 5/10 cores.

                   CT scan and Bone Scan both negative. Stage T2C.

8/27/09         DaVinci RP at WakeMed Cary NC with Dr. Tortora. Discharged 8/28.

9/8/09          Catheder removed. Path post-surgery confirms PCa, with Gleason 3+3 with scattering of 4. Positive margins in L & R posterior, R and L seminal vesicles, with perineural invasion.  Stage T3b.

9/23/09         PSA blood work, with f/u with Uro on 9/30 for results.

 

Initial incontinence pretty bad, starting w/6 Depends pants/day. Gradually getting better, with dramatic reduction in leakage around 9/20. Currently on 1 pad during the day and one Depends at night (for security). Actually totally dry at night. (Pressure off the bladder neck?)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 9/29/2009 11:30 AM (GMT -6)   
Sonny,
I would say yes with an "if". I'm having my 11 months PSA test in mid January, if I get another UNDETECTABLE, I'll definitely come to Orlando to celebrate. On the other hand if the news is not good, I'll be concentrating on the next step to take.
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


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 9/29/2009 6:28 PM (GMT -6)   
Not bad response for the first day of the posting about the GFMPH/Valentines Extravaganza.

So far we have a yes from the following:

OpaN - yes
Ed C - if he gets a zero score in January
Corvetteman3 - yes
Purgatory - yes
CPA - yes
Goodlife - yes
Worriedguy - yes
Sleepless09 - yes, if the friggin metals economy picks up - he needs a few prayers guys.

Met with my local Uro today to bring him up to speed on my surgery. Told him about the gathering. He is on the board of the local Man-to-Man support group. He said that his group would publicize it for us and invite their members. He also said he would work with us on some speakers. Also may want to organize a little Awareness Event with us and offer some free screening at our event.

BTW he is really a nice guy. When I told him about the insurance carp over the Cialis meds he went out and came back with 8, 7 pill 5mg blister packs and 2, 3 pill 20mg packs. Said to remind him when I come back next month for my PSA and he would give me some more.

So the Valentines Day Gathering is off and running and my doc is trying to make it a success for me personally as well.

Keep them RSVPs coming in,

Sonny
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%
ALL NERVES SPARED
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


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 9/29/2009 6:35 PM (GMT -6)   
Greetings, Sonny.  Count me in - my wife will also be there.  Gives us something to look forward to.  You guys have been a big help along the way and we look forward to saying thanks in person.  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


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/29/2009 7:28 PM (GMT -6)   
Sonny,

How can we dance? Many of us have had surgery on our dancing leg. The rest had it nuked. Can't we just sit around and talk ? The surgery has failed to stop that part of my aging body.

Seriously, this thing is shaping up fast. Like the rest, I hope to make it, but there are a few potential bumps in the road between now and V-day. If Purgatory really springs for the girls ( don't believe everything he says ), I'll spring for the counseling services for the dates we bring along, and for any unplanned offspring.

Keep it up. You may have a real winner here. Can Worried guy bring his potato gun ?
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)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/29/2009 8:08 PM (GMT -6)   
goodlife, don't call my bluff, I would make it happen at all costs if it is an ultimate dare! lol.

I danced a month or so back at my wife's work related banquet, and that was with a catheter in place, leg bag and all. Just nothing fancy.

This Valentine's day thing sounds better by the minute. My wife is a Florida Girl (St. Petersburg) so it wouldn't take any talking her into it.

David
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 - first treatment IMRT.


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 9/29/2009 8:13 PM (GMT -6)   
GL, you need to work on your bump smoothing skills. Wouldn't want to have this thing without ya.

We will definitely plan some outdoor activities where the potato gun will fit in. He just needs to figure out how to kit it through Airport Security.

This thing is growing legs by the minute. Somehow we'll figure out how to put some dancing legs under you.

Let this thing grow a little more and then I think I better open up the email to start fielding ideas about the activities you guys want to include. Don't forget to ask your significant others for input. This is Valentines day also. This is a big opportunity to earn some "atta boys" with our SO's.

Sonny
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%
ALL NERVES SPARED
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/29/2009 8:16 PM (GMT -6)   
Sonny,

Can we fit in a 3-day cruise out of Port Caneveral too, that would be fun! Just kidding.
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 - first treatment IMRT.


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 9/29/2009 8:23 PM (GMT -6)   
David,

Maybe we can arrange a boat ride around the lagoon at Disney. Does that work for the gotta get out on the water crowd?
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%
ALL NERVES SPARED
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

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