healing well is an awesome family

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livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/6/2010 4:41 PM (GMT -6)   
I got to meet up with Tony in Vegas this last week and it was great. He and I shared some wonderful sushi and a glass of wine. It goes to show the power of this forum. I have met some great people through HW. I encourage as many as can to meet up with someone on the forum and I bet you will gain a friend for life. Remember we all have a common bond.

peace and love
Dale

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/6/2010 6:08 PM (GMT -6)   
I agree fully, Dale, it is an awesome place, and those I have met, have all been even better in person

david
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 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 11/6/2010 6:41 PM (GMT -6)   
"those I have met, have all been even better in person
"
 
David -- obviously you haven't met me.
 
(uh... self-deprecating humor there, Dave).
 
In all seriousness, this is a wonderful family. Like a family,, sometimes we do get irritable a tad, but the support and concern here is wonderful. I've done a lot of research and reading, but I've probably learned more from just reading this board. The information gleaned is immense.
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/6/2010 6:48 PM (GMT -6)   
I guess I dont get your sense of humor, if that is what it was. I have met 5 guys from here, and 4 of the wives, and there is just an amazing instant bond with them all. Reminded me of going 40 years back, when I got back from Viet-Nam, would meet up with other vets when I was in college.
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 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 11/6/2010 6:55 PM (GMT -6)   
And some of us had a chance to visit at Worried Guy's GFMPH. The spring version will be in Louisiana on April 15 and any of you guys that are interested just get in touch with me. I can honestly say Healing well has been the best part of my prostate cancer journey! Thank to all my new friends.

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

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/6/2010 7:01 PM (GMT -6)   
Same here, Jeff, outside of the outstanding level of love and care of my wife and children, this place is the Mac Daddy in my journey too
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 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 11/6/2010 7:55 PM (GMT -6)   
Point well taken Dale and peace to you as well my friend.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4

DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 757
   Posted 11/7/2010 12:59 PM (GMT -6)   
It's so true, Healing Well is a great bunch of good people. What would I have done without you (us). Probably would have tried to round us up an put us together.

DJ
Diagnosis at 53. PSA 2007 about 2; 2008 4.3
Biopsy Sept 2008: 6 of 12 cores pos; Gleason 4+3 = 7
CT & Bone scan neg
Da Vinci at City of Hope Dec 8, 2008
Rad prostatectomy & lymph node dissection
Cath out on 7th day, in on 8th day, out again 14th day after neg cystogram
Path: pT2c; lymph nodes neg; margins involv; 41 grams,
PSA 1/08, 4/09,7/09, 10/09, 11/09,2/10 <0.01, 10/10 0.1

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6980
   Posted 11/7/2010 1:17 PM (GMT -6)   
Argee totally on the "brotherhood".
 
I was looking back at my radiation thread, which reminds me how many people were cheering me on. Although I didn't respond to everyone each day, it was like being in a race, and seeing friendly faces along the route. It's pretty rough when there aren't any.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/7/2010 1:24 PM (GMT -6)   
The brotherhood of prostate cancer is real. I have met many from this forum, and other forums over the last 4 years. This was my second live meeting with Dale and we did have a great time. And today it continues. I am meeting with Stu Hyatt from YANA and the PPML, and his wife, for lunch at the Bahama Breeze.

We already have much in common. Stu has battled PCa since 1997. I will be nice to him ~ even though he is 77, Stu plays hockey and looking at the way he has battled PCa, I would bet he is what hockey calls the "enforcer" for that team.

What a blessing it is to know you all.

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

Post Edited (TC-LasVegas) : 11/7/2010 11:27:12 AM (GMT-7)


mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 697
   Posted 11/7/2010 2:28 PM (GMT -6)   
There is so much information and experience that it has to be the best in the world!!! Nothing beats experience and "having been there."

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3065
   Posted 11/7/2010 9:07 PM (GMT -6)   

about a year ago my urologist asked me how I was feeling and then gave me my pathology report from my biopsy.  He literally made me read the report out loud.  My wife and I heard words like gleason, cores, etc… Being 44, we were still getting used to the term “urologist” and many of these terms were foreign to us.  The doctor talked with us for a few minutes, ordered some tests that would take 3 weeks to hear the results, asked if I needed anything to ease the shock, and gave me a book to read.  I fired him 3 weeks later not because of his talents, but because we knew we needed someone that came across a bit more caring.

 

I tell you this because I would have much preferred if this doctor would have given me the name of my current doctor, kept his book, and most importantly given me the following URL:  http://www.healingwell.com.  It took me awhile to find this site and all its good resources.  It has taken me even longer to begin to get involved but, I am very glad I have.  I have learned so much from the posts on this site. I have also learned that people on this site care and it goes way beyond just exchanging war stories.

 

Through this site and others I have met the most amazing people that share a personal side that no others can relate.  Side shows like incontinence and ED by themselves are huge issues and defines a man to the core.  There was a post just recently about what it is like to die from PC.  Frankly, I’m just beginning to learn how to live with PC, which is really the main event.  One thing that helps me – is this site.

 

A few weeks ago I too got together with someone I met on the Internet with similar stats to me and ironically lives just up the road.  It was really great to put a face to a name.  Hopefully, I can meet some of you guys down the road.

 

I get my PSA checked this week.  I know that if it comes back good news that you guys will be there to applaud.  More importantly, I believe that if not so good news come back that you guys will be there to encourage.

 

Thank you all for contributing to this site.  Even the most seemingly insignificant thing that flow from your fingertips when you type your post can be the most meaningful thing someone reads.

 

 

 

 

 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/7/2010 9:27 PM (GMT -6)   
Most of us have had to talk to friends, family, or acquaintenances about our PC. When they say "Oh", we know they really won't understand a lot of what we are saying.

With our brothers and some sisters on here, at least we know they they will not only understand what we have, and what treatments, we are having, but all the other stuff we are going through. That means a lot. It is hard to really explain incontinence ot ED, and it is hard to explain not being the same as we were before PC, in many different ways.

At our GFMPH gatherings, we could joke with each other and say things that we wouldn't take from non -PC people and had a great time. It was actually very relaxing.

I have gained some great friends for life here.
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

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 11/7/2010 11:11 PM (GMT -6)   
Hey Jeff, have you set a date for the spring GFMPH in LA?
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 11/8/2010 7:26 AM (GMT -6)   
Ed C.
The date is set for April 15. Get your taxes done early - or file an extension.

I agree with Dale, this is an awesome family. As many of you know, for many reasons, I am still in the PCa closet. Like Stu the mayor was for about 25 seconds. Even my mother does not know! Only very few trusted friends, a couple of neighbors, my immediate family and 100,000 of you guys know. I have nowhere else to vent.

By sharing experience, empathy and humor we give each other a priceless gift.

Thanks
Jeff (the still leaking one)

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7211
   Posted 11/8/2010 10:30 AM (GMT -6)   
Jeff:
 
I'd go, but I hear you're a real drip!!
 
Mel

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 11/8/2010 10:50 AM (GMT -6)   
Ed C I just sent you an e-mail

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
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