GFMPH - NY Fall Gathering, Sept. 28, 29, 30, Oct 1 2017

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Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 8/17/2017 1:38 PM (GMT -7)   
GFMPH NY is here!!!

The party tent is up; Chef Jeff's "command center" trailer is parked at the side of the house; and the Smoker is near the fire pit.
It's happening!!!


I made arrangements with the same hotel as last year. Sept 28, 29, 30, Oct 1. Mark your calendars!
Let me know if you plan on attending.
Jeff

9/5/17 UPDATE Attendee List I am using this list for the food, activities, etc.
Some folks answered on FB and private emails so I am consolidating all info here.


Worried Guy - 2
Cajun Jeff - 2
Redwing57 - 2
Halbert -2
142 - 1
Worrywarts - 2
Sonny3 -1 (updated)
Peterdisablard - 1
Goodlife - 2
Copperguy - 2
Subdenis - 2 (I can't wait to find out if sub means sub!)
Notam - 1
Gardener55 - 2
Jazzman - 2 (updated)



I'm sure I missed some people so please add yourselves to the list. There's plenty of room for more. Come on over!

If you don't know what we're talking about I am attaching an excellent summary from James C from back in the days when he was a mod. He describes the GFMPH experience well. GFMPH Weekends- What are they and how do they work?

"GFMPH Weekends- Good For Men's Prostate Health Weekends, have evolved into a twice yearly gathering of members of Healing Well Prostate Cancer Forum and their wives, girlfriends, spouses and significant others in their life. These weekend events take place at the hosting members homes. They open their homes to us for the weekend and people who wish can claim a spare bedroom, couch, corner of the floor, or other areas to sleep. Some attendee's will wish to stay in nearby motels and drive back and forth each day. Others bring their RV's and campers , and set up in the driveway or back yard, or just a sleeping bag for a spot in the garage, barn or other area, . Water and usually 110v. power is provided. Those staying at the hosts home have access to toilets, showers and all the food you can wish. Breakfast in some form is always available, as is lunch and dinner. It may be cooked there or we may run out to a nearby restaurant for a bite, but no one goes hungry.

--Edit: Since this was written the groups have gotten so large we no longer run out to restaurants. We have food prepared here every night. Some meals are catered, some are prepared by us and other members. We are now a 501 (c) 3 not-for-profit and as such get reduced rates at the nearby hotel and donations are tax deductible. I order a block of rooms and they are really good about accommodating special needs. - Worried Guy --

Friday nights are usually dinner out for the guys and their wives, etc. Saturday afternoon is a group meal with all attendees and their wives,(if they get back from their touring and shopping in time) etc, usually a meal of the traditional regional foods of the area. Abundant food and drink, (both alcoholic and non)- will be available, with many bringing favorites from their regions to share. Some fly in and rent cars, some are picked up at the airport or drive from their homes. So far, the weekends have been hosted by the Jeff's- Cajun Jeff in Baton Rouge, Sonny in Orlando in the spring and Worried Guy Jeff in Rochester, NY in the fall. Hopefully other members can volunteer to host in the future, if they have the room, place of privacy and tolerant neighbors. Always looking for a new place to go.

The purpose of GFMPH is to meet and spend the weekend with people who are sharing a common bond- prostate cancer - with members who are in various stages of their journey. The weekend is spent is eating, laughing, sharing, making fast friends with complete strangers, sorta a longer version of speed dating. Late night conversations are normal, sharing life stories, jokes, and concerns all take place. This is a time to laugh, learn, even cry- to spend time with people who do understand and who aren't judging or uncomfortable talking with you or in front of others of their situations, concerns, fears and hopes. There's always someone willing to answer any questions you may have, no matter how personal or 'delicate' they are.

Wives, GF's, SO's , etc. usually spend parts of Friday, Saturday and possibly Sunday with the hosts wife, off to their selves, doing their own thing with shopping, tours, etc. Each sex has ample time to be with others of their own in privacy for any needed girl/guy talk.

The dates are usually the third weekend or so in April and the last weekend in September. The 'official' dates are Friday through Sunday. Some come early, arriving Thursday and some stay longer, leaving Mondays.

The best thing about GFMPH weekends is the feeling of belonging, sharing and ,yes-even love- that develops among attendees- the bonds of brotherhood formed and experiences shared. Attendance at these weekends continue to grow, but there's always room for one or two more, so plan to attend one next time. You'll return home richly rewarded, probably with several best friends forever, and eagerly looking forward to the next.

Post Edited (James C.) : 3/2/2013 8:52:32 AM (GMT-7) "

If you have questions feel free to contact me.
My email is now enabled.
Jeff

Post Edited (Worried Guy) : 9/28/2017 5:15:23 AM (GMT-6)


Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2291
   Posted 8/17/2017 1:53 PM (GMT -7)   
We certainly plan to be there!

[Edit: Hotel reservations made. See y'all soon!]
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16

Post Dx:
PSA <0.1 : 8/13 - 5/16;
rising - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17

Post Edited (Redwing57) : 8/25/2017 12:34:59 PM (GMT-6)


halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3105
   Posted 8/17/2017 4:01 PM (GMT -7)   
We'll be there! (Please pass on the hotel info so I can make reservations)
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6746
   Posted 8/17/2017 5:07 PM (GMT -7)   
I'll be there!
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/2009
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12, 6/14 no more breaks, last 7/17
Prolia continuous 6-mo inj 12/12 to 6/17
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-?

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 8/17/2017 7:00 PM (GMT -7)   
I've already blocked out a bank of rooms. You don't have to panic. The hotel gives us a good deal since we are a 501(c)3.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6746
   Posted 8/17/2017 9:50 PM (GMT -7)   
For the Scotch tasting crew - remember to bring your Glencairn tasting glass from this spring. There will be some truly beyond unobtainiums this time, thanks to a couple of friends who have been to Europe this spring.

I will try to squeeze in a few extra glasses for new folks, but when the bag space is glass or scotch, plastic cups from Party City are the solution.

Cigars - I have a batch, I think about 35, in varied blends from light to medium in the aging room. The deal is a bit different, as I am now living on Social Security and savings - so $10 for takeaway sticks (as before), but the collection hat will be out for voluntary contributions toward spring 2018 this time. No rules, no scotch-night cigar monitor, but what I can do next year will be limited.

The good news is that I have scattered bottles of good scotch at each host's home, so there will be tastings, maybe just not so many new bottles.

The good news is - things are changing, the bad news is .....
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/2009
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12, 6/14 no more breaks, last 7/17
Prolia continuous 6-mo inj 12/12 to 6/17
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-?

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3105
   Posted 8/18/2017 3:38 AM (GMT -7)   
142---

Plus ca change, plus c'est la meme chose.

I always expect change, except from a vending machine.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

gardener55
Regular Member


Date Joined May 2017
Total Posts : 42
   Posted 8/19/2017 3:29 AM (GMT -7)   
I booked my room in the hotel block. Very much looking forward to meeting all of you.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6746
   Posted 8/24/2017 10:49 PM (GMT -7)   
I made air reservations yesterday. It is getting close!
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/2009
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12, 6/14 no more breaks, last 7/17
Prolia continuous 6-mo inj 12/12 to 6/17
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-?

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1154
   Posted 8/25/2017 11:25 AM (GMT -7)   
Gardener,

You'll be glad you took a chance. Everybody is a little apprehensive about this at first and some even arrive with an escape plan in mind, but I don't know of anyone who hasn't found it fun and enriching.

Welcome to the group. I'm looking forward to meeting you.

Jonathan

CopperGuy
New Member


Date Joined Sep 2012
Total Posts : 12
   Posted 8/25/2017 1:15 PM (GMT -7)   
The Canucks plan to attend this year again. Just booked the hotel.

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4910
   Posted 8/27/2017 7:53 AM (GMT -7)   
I was about to make the hotel reservation yesterday, when I realized, Friday night into Sarurday night is Jewish Holiday, so we won't be able to make it. darnit! Disappointed, but I'll be there in spirit
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margivns, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat in Feb 2017, still .02. May 2017, <.1 (lab did standard test). Retest May 2017-.033, (new lab). Next test, September Decipher test, low risk, .37 score.
My Story: tinyurl.com/oo9x4aq

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4032
   Posted 8/27/2017 7:04 PM (GMT -7)   
I have already started in the direction of Rochester. Tonight we are in Traver City, MI will be here till the 10 the on to Canada for a couple of days on our way to Rochester. The RV is just burning up the road. We plan to do a little Martini Tasting on Friday night at GFMPH.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 218
   Posted 8/28/2017 1:36 AM (GMT -7)   
I am interested, how do you make reservations? Denis
65 YO healthy man
PSA has been 4.1/2 for a couple years,
PSA 5/1/17 4.6,
Multiparametric MRI, 5/15/17 showed lesion
13 core needle biopsy 3 cores positive 3+3 and one positive in lesion, may be overlap
All cores less than 30%

Thanks, Denis
"One day at a time"

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3105
   Posted 8/28/2017 3:34 AM (GMT -7)   
Denis, scroll up to the top post by Worried Guy, click on his name in blue in the left column which brings up his profile and then click on his email. Email him that you and your spouse (or not) are coming. He will give you the hotel info (it's a comfort inn in Rochester NY), and then you show up. That's it. Arrive in Rochester, NY by Plane, Train, or Automobile. If you're flying in, one of us with a car could pick you up or you could rent, your choice.

Come prepared for a great weekend with a bunch of people who will instantly become great friends.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 218
   Posted 8/28/2017 8:23 AM (GMT -7)   
I did email and we will be there. We will drive from Connecticut and then head to Florida after for the winter. Look forward to meeting folks in person. Denis
65 YO healthy man
PSA has been 4.1/2 for a couple years,
PSA 5/1/17 4.6,
Multiparametric MRI, 5/15/17 showed lesion
13 core needle biopsy 3 cores positive 3+3 and one positive in lesion, may be overlap
All cores less than 30%

Thanks, Denis
"One day at a time"

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 218
   Posted 8/28/2017 11:03 AM (GMT -7)   
Just booked my room, thanks for the chat Worried Guy! Denis
65 YO healthy man
PSA has been 4.1/2 for a couple years,
PSA 5/1/17 4.6,
Multiparametric MRI, 5/15/17 showed lesion
13 core needle biopsy 3 cores positive 3+3 and one positive in lesion, may be overlap
All cores less than 30%
8/22/17 - second opinion pathology shows small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps Leaning towards Active Surveillance

Thanks, Denis

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3105
   Posted 8/28/2017 3:10 PM (GMT -7)   
Denis...looking forward to meeting you. We'll be driving up from Philly on Thursday the 28th.
Age at Diagnosis: 56
RALP on 2/17/15, BJC St. Louis, Dr. Figenshau
58.5g, G3+4, 20%, 4 quadrants involved
PSA 3/10/15: 0.10
5/18/15: <.04
8/24/15: <.04
11/30/15: <.04
2/29/16: <0.04
8/30/16: <0.04
2/15/17: <0.006
8/22/17: <0.006
My Story: www.healingwell.com/community/default.aspx?f=35&m=3300024

Subdenis
Regular Member


Date Joined Aug 2017
Total Posts : 218
   Posted 8/28/2017 3:38 PM (GMT -7)   
I look forward to meeting folks and learning! Denis
65 YO healthy man
PSA has been 4.1/2 for a couple years,
PSA 5/1/17 4.6,
Multiparametric MRI, 5/15/17 showed lesion
13 core needle biopsy 3 cores positive 3+3 and one positive in lesion, may be overlap
All cores less than 30%
8/22/17 - second opinion pathology shows small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps Leaning towards Active Surveillance

Thanks, Denis

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4032
   Posted 8/30/2017 7:21 PM (GMT -7)   
Lookforword to meeting you Dennis.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
2 year PSA <0.1
Only issue at this time is ED but getting better

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/5/2017 6:07 AM (GMT -7)   
All,
GFMPH is about 3 weeks away so I need to get the ball rolling. I inserted an attendee list on the top post so I can get a good head count.
That's important for the activities, food, drink, hotel, tents... (and ice cream truck wink )

This gathering is open to anyone with a rotten or missing prostate and their loved ones and caregivers.
Come on over. You'll have a blast.

Jeff
Age: 64, Mar. 41 yrs, 56 dx, PSA: 4/09 17.8, 6/09 23.2
Biop.: 6/09 Pos 7/12, 20-70%, G4+3; Bone, CT Neg
DaVin RP: 7/09, U of Roch Med Ctr
Path Rpt: G3+4, pT3aNOMx; 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE, PNI extensive; Sem Ves, Vas def clear, Lymph 0/13
AdVan Sling 1/11
ED total
PSA: 10/09 .04, 7/10 <0.01, 7/11 <0.01, 1/12 <0.02, 4/13 <0.02, 3/14 <0.02, 4/15 <0.02, 5/16 <0.02, 6/17 <0.02!

cmetalman
Veteran Member


Date Joined Jul 2011
Total Posts : 714
   Posted 9/5/2017 6:43 AM (GMT -7)   
Jeff ,
Unfortunately we are going to have to miss this one . Hopefully we can get to the spring gathering . The GFMPH is such a great gathering I highly recommend it to the newbies.

It's great medicine for the soul.
Cmetalman&Wife
Age of Dx: 51, no symptoms

3/11: Denied life ins. based on elevated PSA of 5.8.
4/11: Biopsy revealed cancer 1(10%) 1 (15%), G6; scheduled DaVinci for Sept.
9/11: radical prostatectomy; nerves spared; organ confined, margins & lymph nodes clear, G6; cath. removed 1 wk. post-op.
10/11: dry, erection at 70%. ( working on it )
1/23/14 :< 0.00
1/26/15 : <0.015
We laugh to keep from screaming

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1154
   Posted 9/5/2017 7:40 AM (GMT -7)   
Hey Jeff,

Please put me down for two. Wifey has retired. smile

Looking forward to seeing you all.

Jonathan

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/5/2017 4:48 PM (GMT -7)   
Jonathan,
It will be great to see your better half! smile And she'll have a chance to see us!
See you soon!
Jeff

Grinnell86
Regular Member


Date Joined Feb 2010
Total Posts : 259
   Posted 9/5/2017 8:12 PM (GMT -7)   
Polly and I will miss your hospitality and the good times in NY. We will be in San Francisco that weekend for our 30th anniversary trip.

Have a great time!

Paul
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