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

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Worried Guy
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Date Joined Jul 2009
Total Posts : 3726
   Posted 9/8/2017 3:58 PM (GMT -7)   
The Tent is ordered and the food fun is firming up!

Paul and P. We'll catch you next time. Enjoy the hills! smile
J

gardener55
Regular Member


Date Joined May 2017
Total Posts : 42
   Posted 9/10/2017 8:06 AM (GMT -7)   
Worried guy I see you had me down as 2 but wife will not be able to attend as she is at a horse show, so I am coming as a single.

Is there something I can bring?

Also I will be driving and staying at the hotel in Greece so can provide rides to people from the hotel to your place.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/11/2017 9:53 AM (GMT -7)   
Hey Gardener55,

If your screen name is eponymous you can bring a bag of potting soil or crab grass killer. smile

You don't need to bring anything. We've got it covered. Over the years we've found that it is far safer to have the hosts plan and/or arrange everything so there are no surprises. One of the other hosts passes the hat (envelop) to help defray the costs.
Of course it is very nice if guests chip in with some of the labor.
I need some NY State residents to keep track of burnables, recyclables, returnables, metals, out of state returnables, fox food, etc..
I know from experience folks from Louisiana are not the best for this task. They call everything "landfill"! smile
See you in about 2 weeks.
Woohoo!
Jeff

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/13/2017 7:29 AM (GMT -7)   
Hey Guys,

There is still "room at the inn" so don't be shy. Sign up and come on over. You'll have a great time.
We are in a suburb of Rochester NY. (I give exact locations by email.)

We are firming up the food menu and want to make sure everyone is covered.
Let me know if you have allergies or dietary restrictions and we'll try to accommodate.

Jeff
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!

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2292
   Posted 9/13/2017 8:16 AM (GMT -7)   
Hey Jeff, just a reminder. Usually one night is a seafood delight, but there are a few who can't have seafood. It will be great if there is a non-pescatarian option. Thanks!
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

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

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/14/2017 9:37 AM (GMT -7)   
We've got you covered.
Lunches will be various sandwiches on croissants. Chicken salads, veggie trays.
Thursday dinner will be a Rochester delicacy that is served at virtually every restaurant in town. I'll keep it a secret for now.
Friday night seafood will be clams, shrimp, fish plus locally grown corn, potato, and other veggies. The non-fish option for Friday will be 1/4 chicken.
Saturday will BBQ - ribs pulled pork, brisket, corn bread, cole slaw, plus...
Fruit salad , pasta salad, mixed veggies, veg trays... will be available every day.
Nobody will go hungry! smile

Friday night will be Martini tasting, Saturday will be 142's world famous Scotch tasting. the selection gets bigger every year.
We'll aim to have our meeting at 3:00 on Saturday but this might move depending upon the weather.
That weekend there is a local festival and car show in town that's always quite popular.
You'll have a great time.
Jeff

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4033
   Posted 9/16/2017 6:16 AM (GMT -7)   
Well we have arrived a bit early. Stopped in to get my new phone and spending the weekend. Will roll out on Monday to see some of the area. Will return next Friday for prepping. Great to be with friends.

Looks like they have thought of everything to make this a great gathering.

Can't wait to see all of you guys and to meet you new guys.

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

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4033
   Posted 9/21/2017 7:44 AM (GMT -7)   
We took the RV out and did a few days of camping on the Lake. What a beautiful area. Back at home base and making plans to pickup the Worrywarts at the airport on Saturday. Things are shaping up for a great gathering. Can't wait to see everyone.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 3933
   Posted 9/21/2017 11:20 AM (GMT -7)   
Wishing you guys (and ladies) a wonderful time. I spent many years in and out of the Rochester area and it's especially nice this time of year. ENJOY!

Jim
Forum Moderator-Prostate Cancer. Age 62 (71 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6-9 yr: 1. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/21/2017 1:07 PM (GMT -7)   
GFMPH is happening!

It's only one week away and the driveway already has a giant RV with Cajun license plates hooked up with wires, hoses, and tubes not unlike RALP patient in the recovery room. smile

We're off to the Food Truck Rodeo for dinner tonight. Woohoo!

Sign up or just come on over and join the fun. There's plenty of room, and food!

Jeff

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6748
   Posted 9/24/2017 11:29 AM (GMT -7)   
I have cigars in hand, am trying to get packed!
NOTE _ MY EMAIL HAS CHANGED!
Moderator - Prostate Cancer
(Not a medical professional)
DaVinci 10/09
IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12, 6/14 to present
Prolia 6-mo inj 12/12 to present
Casodex started 12/14, end 3/15 after psa 30% rise
Zytiga 04-07/15 Xtandi 04/16-8/17
IV chemo being planned

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/26/2017 8:32 AM (GMT -7)   
Hey 142
Cajun Jeff and Mr Worrywart are mowing the lawn. I took pictures as proof.

We're already at the airport! smile
See you later.

Jeff

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2292
   Posted 9/26/2017 12:30 PM (GMT -7)   
I always get a little envious of those who get there earlier!

We should be there Thursday, late afternoon.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4033
   Posted 9/26/2017 2:49 PM (GMT -7)   
Just got 142 at the airport. The event is started. Perry and I took care of the yard work.

Love seeing the guys again.
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 : 221
   Posted 9/27/2017 2:40 AM (GMT -7)   
My wife (Marilyn) and I are looking forward to meeting you all. Thanks for the invite! Denis
65 YO healthy man, PSA 4.1/2 for couple years PSA 5/1/17 4.6, Multiparametric MRI, 5/15/17 showed lesion. 13 core biopsy 3 positive 3+3 and one positive in lesion, may be overlap All cores less than 30% 8/22/17 - second opinion Yale 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 : 3109
   Posted 9/27/2017 3:27 AM (GMT -7)   
We will get to Rochester sometime tomorrow afternoon, we may come up to WG's if we have time, but we're going to be spending the evening with our daughter (RN at Strong). For sure we'll see some of you at the hotel in the breakfast room Friday morning.
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

Hope4Happiness
Regular Member


Date Joined Apr 2010
Total Posts : 40
   Posted 9/27/2017 8:04 AM (GMT -7)   
I haven't been able to read through this entire thread, but this gathering, and others like it, seem like great ideas to build community, discuss problems/results, and relate to others who must face this "journey" (I'm sure it relieves some of the loneliness and isolation one feels dealing with a diagnosis).

How do these get-togethers work? Are they fairly causal? Are there set/scheduled discussion topics or is it just an overall loose hang-out (e.g. chattin' and boozin')?
Age 52 at Dx - 8/17 (5th biopsy); MSKCC - NYC
2/14 cores: Right base medial, G6 (3+3), 1%, 0.1mm; Right apex medial, G6 (3+3), 3%, 0.5mm
6/17, Pre-biopsy: Prostate MRI - PI-RADS 3 - hypointensity in peripheral zone; no dominant lesion or adenopathy
Prostate size: 6.4x3.4x3.8cm; vol. 43cc
PCA3 = 29
PSA at Dx: 6.19, fPSA = 23%
On MSKCC's Active Surveillance (AS) program

Post Edited (Hope4Happiness) : 9/27/2017 11:05:57 AM (GMT-6)


PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 5638
   Posted 9/27/2017 9:06 AM (GMT -7)   
Hope4Happiness said...
How do these get-togethers work? Are they fairly causal? Are there set/scheduled discussion topics or is it just an overall loose hang-out (e.g. chattin' and boozin')?


A little bit of both, mostly the latter but with a few more formal activities. Mostly we eat, drink, talk and try to find a seat by the fire circle upwind of the smoke. Men bring their wives and girlfriends and there are usually a few outings for our "women's auxiliary" but mostly they just hang with us. On Saturday afternoon we have our official meeting which is a men's only affair where we talk about our disease, our treatments, and our prognoses. There is usually an activity scheduled for the ladies that afternoon.

Our host(s) feed us constantly and way too well. GFMPH is hard on one's diet, I'm afraid.

We have a good time. It is quite inspiring to hang out with other guys who are dealing with the same issues as we are but who manage to have a heck of a good time when they get together. If you ever have a chance to join us you won't have to simply hope for happiness, you can see how it is done.
63 Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2nd opn. 7(3+4)), 4 neg
DaVinci 6/14/12. "some" nerve sparing on left
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adj IMRT 66.6 Gy 10/17/12-12/13/12
8/2012-3/2015: Incont., Trimix, VED, PSA<0.015.
AUS & IPP installed 3/5/2015
Forum Moderator - Not a medical professional

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3726
   Posted 9/27/2017 5:26 PM (GMT -7)   
We just had a delightful Italian meal expertly prepared by 142! Bucatini, with tomato and mild Italian sausage with basil and garlic with fresh Italian Parmesan.
Served with 2011 Masi Capofiorin Ripasso red wine.

Hope .... come on over. We have space for you!

Jeff in NY.

halbert
Veteran Member


Date Joined Dec 2014
Total Posts : 3109
   Posted 9/27/2017 7:06 PM (GMT -7)   
Hope, my answer is similar to Peter's. I went the first time to attach faces to the handles. If a few days hanging out with people who are truly living life to the fullest in spite of (and because of) what we've experienced sounds inspiring, it's because it is.

We do talk a lot about our lives, our children, our grandchildren, our hobbies, our jobs (yes, some of us are still working for a living). We also do talk about why we're there and what brings us together...sometimes in very intense one on ones. It's all good.

If you're in the area, ask someone where to find it, and come on by.
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

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6748
   Posted 9/27/2017 7:31 PM (GMT -7)   
I'm here! Cooking for my part is done until Sunday morning, when I do breakfast.
The weather just turned, so we are headed to the south 40 for hand-rolled organic tobacco cigars!

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 5638
   Posted 9/28/2017 11:40 AM (GMT -7)   
I'll be there noon-ish tomorrow. Looking at the weather forecast it seems I am bringing some rain.
63 Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2nd opn. 7(3+4)), 4 neg
DaVinci 6/14/12. "some" nerve sparing on left
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adj IMRT 66.6 Gy 10/17/12-12/13/12
8/2012-3/2015: Incont., Trimix, VED, PSA<0.015.
AUS & IPP installed 3/5/2015
Forum Moderator - Not a medical professional

gardener55
Regular Member


Date Joined May 2017
Total Posts : 42
   Posted 9/28/2017 6:18 PM (GMT -7)   
I, too, will arrive around noon tomorrow. Stopped part way in Binghamton NY just across the PA border.

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4919
   Posted 9/28/2017 8:03 PM (GMT -7)   
I'm really going to miss being at this one guys. But alas, I'll be home, doing a 25 hour fast, no food, no water, no coffee, no nuttin, in hopes of being "inscribed in the book of life, for at least the next 12 months.

Enjoy, and hoist a few for me.
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 Feb 2017, still .02. May 2017-.033, August 2017- .033
Decipher test, low risk, .37 score

cmetalman
Veteran Member


Date Joined Jul 2011
Total Posts : 714
   Posted 9/29/2017 3:10 AM (GMT -7)   
Unfortunaly we can't make GFMPH this year but my thoughts are with all the great people we have met throughout the last couple of years .

On a side note I was at a business gathering last night and just found out one of my long time business associate just had prostate surgery. He wasn't there but his wife was and mentioned it to me secretly. She was pleasantly (?) surprised when I told her I had my prostate remove six years ago .
I told her that her husband can all me at anytime to talk and was very pleased to hear it .


Cmetalman
Paying it forward 👍



I'm paying it forward
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
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