Interviews at the Open Conversation in Miami (mine included)

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Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 8/15/2009 1:24 PM (GMT -6)   
Below is the link to my interview from the Prostate Cancer International event in Florida last May.  I don't look too foolish I don't think...For more information visit http://pcainternational.org or pcamission.org er, they paid for this summit...
 
 
 
Other folks I met and broke bread with...
 
Below is an interview of a doctor who only after he found out he too had prostate cancer realized the doctors don't fully understand the patient experience.  This facsinated me.  Dr. Schellhammer is the former president of the American Urologic Association..
 
Mike Scott is one the top PCa advocates out there...And he owes me dinner.
 
  
There is more coming soon...
 
Tony


 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 8/16/2009 9:07:19 PM (GMT-6)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/15/2009 2:18 PM (GMT -6)   
Hi Tony,

I watched your most recent interview and I thought you did very well!

I'd vote for you to be our spokesperson anytime! tongue

Thank you for sharing the links with us.

Best regards,

Barry a.k.a. Idaho
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 8/15/2009 2:41 PM (GMT -6)   

Thanks for the links and doing what you do, Tony.

 

Mike


-Hernia, mesh and large scar, surgery early 2006
-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.
-Bone scan Dec 08: Negative
-Barium enema X-ray March 09: Small diverticulosis
-MRI with endorectal coil (April 09 as part of a study)
-3D advanced TRUS (April 09 as part of a study)
-CT (April 09 as part of a study)
-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.


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 8/15/2009 3:59 PM (GMT -6)   
Very impressive performance Tony. Thank you also for the URLs  to all the other clips. They are informative and very well done.
Hope you're doing well.
All the best to you.
 
Magaboo

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA on the 26 Jan., 09, =0.05; 17 July 09=<0.04


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/15/2009 6:19 PM (GMT -6)   
Thanks guys,
Some good videos at the PCaI website. The Schellhammer interview is very strong...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 8/15/2009 6:42 PM (GMT -6)   
Tony, you are the best. I thought it was great. I will pass along to non friends that should be tested!
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


Arnie
Regular Member


Date Joined Aug 2009
Total Posts : 372
   Posted 8/15/2009 7:10 PM (GMT -6)   
Well done, Tony, and very helpful to those who are pre/post diagnosis and pre/post treatment...........I, too, appreciated the links to the other clips and watched them as well. Although I'm a new member, I've been reading for quite some time, and appreciate the work you and the others do as moderators. Keep up the good work on our behalf and with your own struggle as well.
 
              Arnie in DE
Age 56 (biopsy & surgery)
PSA at Diagnosis-3.9
Biposy 8/19/08--4 of 12 cores positive; 5% involvement, Gleason 6 (3+3)
 
Surgery 1/26/09-DaVinci Robotic Prostatectomy at Presbyterian Medical Center/HUP-Phila, PA
Dr. David Lee
 
Pathology Report- Adenocarcinoma, no capsular involvement, seminal vesicles clear, lymph nodes clear, negative margins, Gleason 7 (3+4), Stage T2C, Prostate 61.8 grams, gland involvement 2-10%
 
Catheter removed after 8 days, totally dry at 3 months. ED issues continue, Viagra (via ADC) nightly (100mgs), VED use in earnest at 6 months. "Ball Park Frank" plumping at this point.
3 month PSA--<0.1
6 month PSA--<0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/15/2009 7:44 PM (GMT -6)   
Tony, finally got to watch your video this evening. Didn't know you were such a handsome devil, lol. It was very good, and was proud of you, you represented all us here with style, substance, and dignity. Good job, brother.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/15/2009 8:34 PM (GMT -6)   
Impressive, and you look so young !

Great job.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
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)


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 8/15/2009 8:51 PM (GMT -6)   
Tony-
We will never be able to thank you enough for all you. Your video was amazing and the time and dedication you devote to PCa is out of this world. Thank you from the bottom of my heart!!!
Father's Age DX 62 (now 64)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/15/2009 9:52 PM (GMT -6)   
This is why I stayed here...you guys are the best. These comments really do touch my heart.

Ms Doting...you are very welcome...But this board has you and James C here as well. I believe that there is as much thanks due to both of you as well...thanks in fact to all the wonderful people who came here willing to share from the heart...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


dsmc
Regular Member


Date Joined Jul 2008
Total Posts : 149
   Posted 8/16/2009 7:13 AM (GMT -6)   
Great job Tony! This is why you are the"go to guy" around here. I saw your link on Facebook. Have a great weekend....

David
Age 54
Pre-op PSA 4.3
Surgery Feb. 17 2005
Post-op Path : Gleason 3+3=6
Right pelvic lymph nodes: negative for metastatic carcinoma
Left pelvic lymph nodes: negative for metastatic carcinoma
extent: right lobe 40% left lobe 10%
capsular penetration: Absent
Seminal vesicles and vasa differentia: Uninvolved
Prostate: 26 grams
Post-op PSA's <0.04 for 3 years
Feb. 08: 0.07, March 08: 0.08, June 08: 0.09 and Sept. 08: 0.1
IGRT scheduled.....November 17th....
FINISHED 01/14/09 YEA!
05/14/09
1st PSA after Salvage RT <0.04..... Another YEA!


Bluenose
Regular Member


Date Joined May 2008
Total Posts : 260
   Posted 8/16/2009 7:27 AM (GMT -6)   

 

   ...hit it out of the park! Great job Tony, thanks.


 
  age: 53 @ Dx, Pre-op PSA Feb 08' 5.0, April 08' 4.1
  Biopsy 5.1.08, 5 of 15 cores postive, T2a, Gleason 3+4=7
  DaVinci performed 7.29.08
  Bladder sling installed, umbilical hernia repaired during surgery.
  Path report, "cancer fully contained, margins clear".
  Cath removed 8.8.08, ED therapy begins 8.9.08
  100mg Viagra three times a week, pump for ten minutes daily
  and hold for ten minutes.
  8.16.08 switched to Levitra 20mg, immediate results
  9.15.08 Pad free at night, one thin (light) pad during the day
  9.18.08 1st Post-op PSA Undetectable Zero's....Yes!
  12.22.08 2nd Post-op PSA  Zero's still...
  6.23.09 1yr Post-op PSA Still a zero..
  Pads gone 1.3.09, finally found the courage...Thanks ya'll
          ".....tryin' to reason with hurricane season...."
       


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 8/16/2009 12:01 PM (GMT -6)   

Tony:  GREAT JOB.  You seemed very comfortable with the camera and your info was right on.  Thanks for your work on getting the word out.

 

Jeff T


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


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/16/2009 2:38 PM (GMT -6)   
Tony,

With all this very positive grassroots support from us on the forum, you might consider a run for the presidency in 2012! tongue

You'd get my vote!

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/16/2009 2:54 PM (GMT -6)   
I don't even run my own house. Gotta get back to the honey-do list...

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 8/16/2009 8:17 PM (GMT -6)   
Bravo, Tony! I hope to see a curtain call someday. Thanks for all you do.

Bob
 AGE:57
 Dx: October,27(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T1c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci Jan. 19th, No lymph node involvement, all margins clear.
 8 week PSa <0.01
 Gleason downgraded to (3+4)7
 6 month Psa , 0.1 
Fully continent...ED progressing as expected.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/16/2009 9:10 PM (GMT -6)   
I renamed this thread so that proper credit is given to the folks that sponsored this ~ Prostate Cancer International.

I am merely a small part of this though I was honored by the invite. They did a wonderful job with this. I hope that we made an impact. Small group, but a large message...

Please also see the kickoff message from Marta Plaza: http://www.youtube.com/watch?v=C8rGckexbAc
 
Still more coming

Tony


 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 8/17/2009 1:37 PM (GMT -6)   

Tony,

Great job! Thanks for the info, and thank you for being a VOICE for all of us!! I truly believe the more people are open and talk about this disease the better the chance for a true cure.

Keep it up!!!

Mike


Age Dx 37, 7/2008, First PSA : 4.17 5/2008
Second PSA After 2 weeks of antibiotics : 3.9 6/2008
DRE: Negative 5/2008, Biopsy: 6 out 12 Postive all on right side, Gleason 7 (3+4). Bone Scan/CAT Scan: Clear 7/2008
Cystoscope: Normal 7/2008, Prostate MRI: Normal 7/2008
Da Vinci Surgery 7/2008, PostOp: T2c (On Both sides), margins clear, seminal clear, nodes, clear. Gleason 6(3+3).
4 Post OP PSA's from 9/2008 to 6/2009: <0.1
 
 
 


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 8/17/2009 3:05 PM (GMT -6)   
Hi Tony - well done!  As always you credit others and acknowledge their contribution too...however to be honest (on the other side of the world) we were just so....  excited to see and hear YOU. With of course, all that wonderful information (and a lovely speaking voice)..  It was a great contribution to the global cause. CJ and I are sitting down together tonight to look at the other links. Many thanks TC tongue
Your upside down, inside out friends, Lana & CJ... xxx
Creed_three - Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable <.1 PSA since, specifically, June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/17/2009 11:05 PM (GMT -6)   
Hi Lana,
We are trying to finalize a trip down your way in November. We cancelled our dream trip to down under in 2006 because of my diagnosis. My mother died last year and wanted us to get that trip in. It looks like she planned it well. We really shouldn't but, we may anyway.

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 8/20/2009 6:11 AM (GMT -6)   
Yeah!! I sure hope you do come over Tony. You for one,  have taught me more than many others ever could (and I know you didn't intend to "teach" as such, in the early days). It will be nice to be able to thank you in person. Hope Ruthie is coming along with you. The weather should be good unless you are heading south first, in which case, "bring your woolies with you"  even in November! I remember when you lost your mum last year,  Tony - a sad time for you. It would be good however to see you this year if you do manage to fit it all in. Best wishes for now, Lana  :-)
Creed_three - Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable <.1 PSA since, specifically, June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. 

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