GFMPH Weekend #2 9/24, 25, 26 in Rochester, NY - T minus one week!

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Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/16/2010 7:19 PM (GMT -6)   
Guys,

T minus One week!!!. This is so much fun. I can't stand it!

I heard from a few of you publicly and a couple privately. Here's what I have so far:

Goodlife - claimed Porch
Jeff Corvetteman - claimed living room couch
Sonny - RV also offered an extra room for anyone who needs it.
Paul - in someone's RV
Mikey - RV
Someone else - Back bedroom.
Someone else - not confirmed.
Me

If anyone else wants to come, just email and I'll give you the address. I promise we can make room no matter how many show up. Don't be shy.

Also for $40- $50 per night, the Friendly Motel is right down the road.

Maybe Friday night we will go to dinner at the neighborhood winery a few minutes away.
Saturday we can do a barbecue at the house: Portabella mushrooms for the health conscious and steak for those living on the edge. Last year, one person had more beef than some third world countries consume in a week.

I'll have water and electric hook ups for RVs and will give you all the wifi password when you get here.

The bore scope is clean; the ultrasonic transducers are grounded; the UV beams are off; the guns are oiled; and the bonfire pit is loaded. I think I have everything necessary for a fun weekend.

I heard that a stress free weekend is GFMPH. Let's test that theory.
Jeff (one of many)

Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 9/17/2010 8:05 AM (GMT -6)   
Hi Jeff sorry that I cannot make again this year I hope that you all have a very good time and you never know I might turn up on your doorstep some day Colin

Post Edited (Colin45) : 9/17/2010 8:09:09 AM (GMT-6)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/17/2010 8:13 AM (GMT -6)   
Colin

Good to hear from you. I wondered how you were doing!
The door is always open if you want to escape the heat and humidity. Come on over any time. It's GFMPH.

Jeff (one of many- Unum e pluribus)

Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 9/17/2010 8:36 AM (GMT -6)   
Everything is good over here go for my 6 month PSA next month I cannot get on here much due to the lack of internet over here I normally keep in touch using my phone but it has become un-readable lately becase the lines are to long for my screen (and to scroll it takes forever to read a post) before the lines fitted the screen so it was easy to read and I do not go onto the computer to often

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 9/17/2010 12:38 PM (GMT -6)   
So many thanks for doing this , Jeff!

Looks like you've done a lot of preparation.

I'll see you there.

Mike
-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.
-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.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/17/2010 1:00 PM (GMT -6)   
Mike

It is I who should be thanking all of you for making the journey.

Truly a pleasure.

Jeff

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/17/2010 6:09 PM (GMT -6)   
Jeff,

I have offered a ride to anyone in Ohio, Michigan, Indiana. No takers so far.

Am looking forward to the second annual meeting of the brotherhood.
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/17/2010 7:55 PM (GMT -6)   
Hey Goodlife,

That is a very nice offer. They don't know what they're missing.
Just riding with you would make the weekend worthwhile.

See you soon

Jeff

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 9/17/2010 8:52 PM (GMT -6)   
What!!! What is my name doing on this list???? I was only joking. Sheesh! I was just trying to be nice....
man, this is awkward...

Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 9/17/2010 9:44 PM (GMT -6)   
Jeff,

The beast is just about packed and ready to go. We plan to leave Orlando about 6 am Sunday.

First stop is with brother Purgatory, in SC. It is about 590 miles and we hope to make it in time to go out to dinner with he and his lovely wife. I'll be picking up his donations for the explosive portion of the weekend.

Monday morning we'll head out early again. We have another 500+ mile day planned and will stop just over the PA/WV line in Jefferson, PA. Found a cool RV park there. It is on the same property as the Jefferson Volunteer Fire Department. They have about 50 full hook-up sites and use the proceeds to support the Fire Department.

Tuesday we don't have to leave quite so early in the morning. Only have about a 300 mile day planned and we will be at the Niagara Falls RV park. Wednesday and Thursday we'll see the falls and do a little exploring.

We will be at you place in the early afternoon on Friday.

Looking forward to the weekend. The plan for Friday dinner sounds good to me. Put me down for steak on Saturday (I'll have my own in the RV freezer), I am on vacation and I ain't gonna worry about anything health related until after the first of the year. And oh yeah, I have a killer appliance that makes great frozen adult smoothies (beverages). I have all of the mixers, tequila and rum too.

As the others have said, thanks so much for hosting the event. Sure would be nice to see this thing grow legs and become a annual event even if it is moved around a little bit.

See ya soon and looking forward to it. yeah yeah yeah

Sonny
60 years old when diagnosed
PSA 11/07 3.0
PSA 5/09 6.4
da Vinci 9/17/09
Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5%
positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Completed Radiation for MET
9/7/10 PSA 2.2

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/17/2010 10:18 PM (GMT -6)   
Jeff,
One of these times I'm going to pull in and use those hook ups. Sorry it isn't this time.

You guys have a great time!

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/18/2010 7:24 AM (GMT -6)   
Tony.

There will always be a space for you - any time. I even ran a 200 ft leech line with 4" corrugated weep pipe, 3 feet down so now I have a place for emptying your tank.
At $15 a dump, I think I've found my source for secure retirement income. ;-)

Mark your calendar for next year!

Jeff

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 9/18/2010 1:50 PM (GMT -6)   
I think maybe the pay toilet, and the coined operated tissue dispenser is overdoing it tho !
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/18/2010 2:15 PM (GMT -6)   
Hey Goodlife. Thanks for spilling the beans Pal. Now they'll bring their own. Darn it!

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 9/18/2010 2:22 PM (GMT -6)   
Still willl be there..Thanks Jeff
-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.
-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.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/19/2010 6:13 AM (GMT -6)   
Hey Guys,

I just heard that unfortunately the person who was going to take the back bedroom will not make it to the outing. That means it's open and available. It has a single bed close to the bathroom.

Any takers?

Jeff (the excited one)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/19/2010 9:18 AM (GMT -6)   
don't forget to have a vending maching for both depend guards and pull-ups, another subtle income source to your affair.

you guys that will be, you are lucky dogs.

i am awaiting the Sonny Caravan to pull up here in Easley, SC with his super coach. Already have our fire pit ready for them, and hoping to have a good time. He was able to secure a perfect overnight spot, just 2 blocks from my house, that will give them total privacy.

i will try to have some pics to share, and perhaps an HD film clip of this visit out on Youtube by morning for others to see.

let the party begin

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

JB71
Regular Member


Date Joined Nov 2009
Total Posts : 206
   Posted 9/19/2010 1:15 PM (GMT -6)   
Mikey1955;

are you still going and who is traveling with you?

Was considering going on the bike but it's just a bit to far for my butt.
Age, only 71.
July 2009, PSA 9.1, free ratio 0.16
September GLEASON 4+4=8, T2A
Prostate 44cc.
Calcium: 2.46  (range: 2.20 - 2.65 mmol/L)
25 Hydroxy Vitamin D: 102 (range: sufficiency:
76 - 250 nmol/L)
Bone Scan: Negative
CT Scan scheduled for Dec. 1st. Negative.
Started Casodex 50mg. on Nov. 6, first pill of 30.
Got Lupron 22.5mg ( 90 day ) on  November 19.
No real side effects as of Dec. 15 except dry skin and hair but getting quite 'porky' in the belt area even though now I go to the gym, three times a week. Also I dont have a need to shave anymore so now I can save my 'shaving' allowance and direct it to my stash of Depends !
 
Christmas Day got my first hot flashes. Thanks Santa!
 
Open surgery done on Jan. 20th. by Dr. J. Chin at London's University Hospital.
 
Cath removel scheduled for Feb. 8th. Yes, I know,
that will be 19 days. Dr. is out of country until then.
====================================
Pathology Report:
 
Gleason Score: cannot be determined due to hormone therapy effects. ???????
Extraprostatic Extension:
present, left radial, multifocal
present, left basal, multifocal
Resection Margins:
Apical: involved by invasive carcinoma, multifocal
Bladder Neck: involved by invasive carcinoma, unifocal on left side.Other: non-tumoural prostatic present at resection margin.
Perineural Invasion: present.
Seminal Vesicle Invasion: absent
Lymphovascular Invasion: absent
Lymph Node Status: no malignancy in regional lymph nodes
Additional path. findings:
high grade prostatic intraepithelial neoplasia
 
Pathology Stage: yp T3a NO MX
==================================
Radialogist appointment was on Friday Feb. 26 with Dr. Glenn Bauman in London.
Got another Lupron 90 day shot today and he wants to start IMRT soon. CT Scan plus measure scheduled in about 3 weeks. ( march 15)
 
First PSA test since surgery on March 18th.
with the results of <0.03 !!!
 
Started a Facebook page for bikers with prostate issues at:
 
IMRT to started on May 10. Going to get 33 units.
 
.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 9/19/2010 1:28 PM (GMT -6)   
Hey JB

If you come you'll be able to see the sorry state of my motorcycles. My Kaw 500 triple is sitting in the barn along with the the others in the fleet.

You might shame me into cleaning it.

Jeff
I'll send Mikey an email now to make sure he sees this.

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 9/19/2010 1:33 PM (GMT -6)   

Hey Jerry, Going alone but have company in RV at GFMPH with friend from NY. You're most welcome to travel with me...I think Worried Jeff had a cancellation and a bedroom's open. I'm probably less than an hour an half from you. Could share driving (I have a small RV...sigh).

 

Let me know! My email is open.

 

Mike


JB71
Regular Member


Date Joined Nov 2009
Total Posts : 206
   Posted 9/19/2010 4:52 PM (GMT -6)   
Mikey, still interested. Give me an idea on costs.
 
The BOUNTY sailing trip drained my bank account.
 
Maybe I should consider doing this next year.
 
When do you expect to be back in St.Thomas ?
 
I've got a dental appointment on Tuesday but of course, I can cancel that.
 
JB71

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 9/19/2010 6:07 PM (GMT -6)   
Don't let the $ keep you away. Bet you have the time of your life for very little $.

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
Only issue at this time is ED

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 9/19/2010 6:21 PM (GMT -6)   
Hey JB,

Costs?... No costs from me. Just help drive. That part's on me. However, make sure you have a valid "out of province health" insurance. If you don't, it'll be a really short trip. I have mine. Sorry, a reality. I expect to be home by noon on the following Monday.

Mike
-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.
-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.
-Bladder control within 48 hours of catheter removal
-ED ongoing but improving. ED oral meds didn't do much initially. TRIMIX was working very well. Initial dose of 0.1 mL too much. Had priapism at 0.075 mL that ended up in a humiliating ER visit. Doses recently after 50% dilution by Uro about 0.025 mL or less. Don't use Trimix anymore...I'm too sensitive to it, even at very low doses and the Alprostadil is pretty consistent in causing erection pain...had a few episodes of 3+ hour wood with pain.
-Levitra now starting to work at low doses of 5 mG to 10 mG. Sometimes the side effects like stuffy nose aren't fun...sometimes OK.
-Was supposed to see ED doc last week, but due to his schedule, will now be late August. Will discuss bimix with him.
 

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 9/19/2010 6:29 PM (GMT -6)   
Sorry. double post

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 9/19/2010 6:39 PM (GMT -6)   
Jeff will charge you to pee, but other than that, the weekend is pretty cheap!
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!
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