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Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3257
   Posted 5/12/2011 7:22 PM (GMT -6)   
Hi Guys,
Well I saw my onco doc after my somewhat discouraging psa of 3.34 and he said lets just wait and see. I told him that another onco doc in vegas said he would have me on the lupron to keep my testosterone level down as well as the daily d.e.s. He said it may just be a p.s.a. bounce and to not worry. He then handed my wife and I a list of new treatments and said that I have a lot of bullets left in the gun. I am still thinking about retiring from my job as a pipefitter/welder and enjoying life. I only need 40 more posts to be a veteran member. I will be around. Todd

p.s. My signature needs some updating. I am now 47 years old it has been 5 years since my D.X. My current p.s.a. is 3.34 and I am still doing excellent
dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months
Cat Scan 12/12/08 Prostate normal size and shape. No tumors detected. Left lung clear of all nodules right lung showing only benign scar tissue. Lymph nodes normal
Bone Scan 12/24/08. Clean!!! went off casodex January 4 2009
Current psa 2/13/09 .16
Latest P.S.A. 0.05 newest P.S.A. undetectable

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3992
   Posted 5/12/2011 7:32 PM (GMT -6)   
dude -- you're a monster.  it's great to read such good news!
 
ed
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/12/2011 7:48 PM (GMT -6)   
One of my best stories.

You have no idea how many people you have inspired, Todd. When I get new members to my live support group I make sure they hear stories about advanced guys doing well. Most are very happy to hear these stories and they get right down to working on being a survivor.

I love ya buddy and I know it's my turn to get to Washington. But I have to head out to Kansas City first. David E and I have a date set with Kenny Chesney and Zac Brown coming up. Here's to the young guys showing the HGHMPH how to do it...:-)

So you come here again....lol

Tony
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:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 5/12/2011 7:50 PM (GMT -6)   
Way to go Todd !

Maybe you could retire and write a PC best seller. What a story you have to tell about not quitting.

Thanks for checking in !

Goodlife

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/12/2011 8:14 PM (GMT -6)   
Todd, my dear brother, you are the man.
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 margin
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, 2/11 1.24, 4/11 3.81
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 9/10

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 5/12/2011 8:25 PM (GMT -6)   
Thanks for the update Todd. Get those 40 posts in and I think you get a free t-shirt.
Michael

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 5/12/2011 10:54 PM (GMT -6)   
Todd,
 
The free t-shirts never fit. Hold out for a beer.
 
I'll vote for a bounce.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6079
   Posted 5/12/2011 11:34 PM (GMT -6)   
Come on Tony give this guy veteran status now, there will be no complaints, with just that 1 post and the inspiration that it delivers, veteran status is not just a number it it is content and the spirit of the poster.
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 5/13/2011 6:36 AM (GMT -6)   
Todd I want you to rock with the Baird Creek forever or until you get blisters on your fingers (LOL). Just a heads up my friend, DES should give you a pretty low T level by itself. I has done so in my case for many years and none of the side effects, that they claim are not from Lupron the drug, but because of those lower 'T' levels. So, I question things as usual.

don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/13/2011 10:02 AM (GMT -6)   
Todd,
 
Glad to see you are doing well. I appreciate your posts and continue to learn from them.
 
Just a question on the DES. My doctors say it is not available. How did you get a prescription and do you need a compounding pharmacy?
 
Zufus,
 
Feel free to weigh in as I keep up with your situation as well.
 
Don

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 5/13/2011 11:23 AM (GMT -6)   
Don-  how do you like being with a less than informed doctor??? Think he has any biases on estrogenic drugs????   Ask Todd about his Rx, you heard from me before. 
 
I can tell you I go intermittently and on-off as I feel and has worked well thus far.  Went off back in Jan. for like 6 weeks, psa did rise significantly (of course 6+ yrs. of using this drug now), went back on it and the last 5 months all declining Psa's...which even I can hardly believe. I occassionally through in different additives once in a while:  boron, silymarin, artemesinin,  D3 vitamins...types of things...usually not to often. Just enough to play change up and maybe it helps, I don't know for fact.  I look at even novel therapies because I would like to consider such before going to $5000 a month protocols to help some s.o.b. or drug mfg. cashin on PCa patients. That is what is going on:
Abiraterone and Leukine or Revlimid can cost around  $5000 per month each...but it is all about best care for the patients. Still likely worth doing although we are constantly being ripped off by the big fish.  They probably enjoy our $$$$ pain level.

Post Edited (zufus) : 5/14/2011 5:24:01 AM (GMT-6)


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 5/13/2011 1:30 PM (GMT -6)   
Zufus,
 
Just got home from visit with urologists. I asked about the DES and it was clear he would not prescribe it as a treatment. He wants to go back to Lupron on an intermittent basis. I asked about some other alternatives I have read about and he is pretty much sticking to the standard treatments. May be time to investigate some other doctors with more open minds.
 
Don

njbmwgs
Regular Member


Date Joined Apr 2011
Total Posts : 47
   Posted 5/13/2011 6:26 PM (GMT -6)   
holy smokes that's a great result!! Way to go, and congratulations on such improvements.

If it were me I'd quit my job, but then again I'm always looking for a reason to quit my job and become a "professional retiree" :D

congrats again
Age 42
PSA 2/11 of 5.6
Biopsy 3/11 5 pos out of 12 Gleason 6's (3+3) and one 7 (3+4)
Full bone scan 4/11 - neg
Pelvic CT 4/11 - neg
exploring options and getting blurry eyed reading everything I can
staying positive

Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3257
   Posted 5/14/2011 7:55 PM (GMT -6)   
well its like this. I fired 3 doctors before finding one who would prescribe the d.e.s. for me. Even then they said it was unavailable. I did my own research and found that any compounding pharmacy can make the stuff. There are many doctors who will not prescribe it because of the side effects. You have to take your treatment into your own hands. There are guys out there who will allow you to do that. You juust have to find them. Todd
dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months
Cat Scan 12/12/08 Prostate normal size and shape. No tumors detected. Left lung clear of all nodules right lung showing only benign scar tissue. Lymph nodes normal
Bone Scan 12/24/08. Clean!!! went off casodex January 4 2009
Current psa 2/13/09 .16
Latest P.S.A. 0.05 newest P.S.A. undetectable
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