Officially Accepted into Clinical Trial

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 6/16/2011 10:58 AM (GMT -6)   
I have been officially accepted into the clinical trial being conducted by the National Institute of Health and the National Cancer Institute.

The trial "F-18 Sodium Fluoride in Prostate Cancer".

Objectives:
To evaluate the effectiveness of F-18 NaF in imaging studies to measure bone tumors and their change over time and compare with clinical course, in individuals with prostate cancer.
To determine the smallest amount of change in the bone tumors that F-18 NaF can accurately measure.

clinicaltrials.gov/ct2/show/NCT01240551

I reported earlier that when I discussed this trial with my Onco, he was very in favor of it. He said that this trial and the resulting 4 scans that I would receive over a 12 month period would give us extremely valuable information to monitor and treat my specific PCa.

I was scanned in August 2009, with the normal Tc 99 nuclear scan prior to my surgery and there was nothing shown except for my knees which had been through 5 operations.

May of 2010, my Onco was able to get the F18-PET scan approved. Primarily because there was a shortage of the contrast agent used in the T99 scan. This F18 scan found my MET. Additionally, the scan found not only my knee issues but issues in my spine, shoulder, and foot. While these did not appear to indicate MET activity, they did show as degenerative changes.

As part of a 1 year follow-up I was scanned in May 2011, utilizing the Tc99 nuclear scan. F18 was not approved by my insurance company. This scan again only found my knee issues and none of the other issues brought up by the F18 scan.

If nothing else, this gives me confidence to try and find out where my continued rise in PSA is coming from. Additionally, I feel this trial is important for the PCa population. Success of this trial in being able to find and monitor MET activity will help it along the path of greater acceptance by Medicare and ultimately the Insurance industry.

AS A REALLY GREAT BENEFIT, I was able to schedule to be scanned in Bethesda, Md on September 14th and September 21st. This schedule works wonderfully for my participation in the New York addition of GFMPH the last weekend in September. From Bethesda to Worriedguy's place is only about 350 miles.

Save my spot in the driveway and move the basketball hoop Jeff, the wild driver and the RV beast are on the way.

Sonny
60 years old - 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
PSA .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 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2
4/10/11 PSA 3.8
5/19/11 PSA 4.9

don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/16/2011 11:21 AM (GMT -6)   
Good for you, Sonny. I hope this helps you with characterising your situation.
 
I will be watching for updates on how well the scan works as I am currently searching for imaging test (or any other) that might indicate where the rise in my PSA is coming from.
 
Don
 

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/16/2011 11:30 AM (GMT -6)   
That's great news, Sonny.
James C, 64, East TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% inv, lf. lobe, GS6
9/07: Nerve Spar. open RP, Path: pT2c, 110 gms., clear except:
Prob. microscopic inv.-left apical margin -GS6
3 Years: PSA's .04 each test until 4/10-.06, 9/10-.09, 12/10-.09, 2/11-.08, 5/11-.08
Bimix .30

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 6/16/2011 11:32 AM (GMT -6)   
Sonny - that is so cool.

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 6/16/2011 11:55 AM (GMT -6)   
James, Steve, thanks guys.

Don, I don't know where you live but if you look at the inclusion criteria, there are two paths.

One is known METs and the other is a PSA doubling time of less than 6 months. Maybe you fit and you might get in on this trial.

Sonny
60 years old - 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
PSA .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 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2
4/10/11 PSA 3.8
5/19/11 PSA 4.9

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7203
   Posted 6/16/2011 12:40 PM (GMT -6)   
This is truly great news. I'm sure you will keep us informed.
 
Besides, I always figured you'd be on trial someday.
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/16/2011 12:51 PM (GMT -6)   
Sonny,

Glad you got those September dates settled for the test.

As you know, my oncologist is already looking over the same clinical for me as well. We will be disucssing it next Wednesday when I see him. He already told me that his group was participating in that exact trial. With my rapidly rising PSA, and quick doubling time, I would probably qualify as well. Will let you know after I meet with the doctor.

I would sure like to know more specifically what is going on with me, and hopefully an advanced test like this could help both of us.

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 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, 6/11 5.8
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

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 6/16/2011 3:38 PM (GMT -6)   
Fantastic news Sonny. This trial certainly has the potential to help you, and the rest of us as well.

Great idea on the scheduling as well...

Wishing you the very best.

K
Age 57 at Dx
5/09 PSA 2.26
6/10 PSA 3.07 FPSA 18% DRE +
Biopsy, 7 of 18+, >60%, 4+5=9
7/21/2010 - RRP
Nodes & Ves neg
tumor contained, still 4+5=9
pni ext.
9/3/10 - 0.04 99% continent
10/14/10, 0.04, and lupron #1, 99.9% continent
Total ED, implant on 12/15/10
2/11 - 0.04, HT #2
6/11 - 0. , HT #3

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 6/16/2011 3:45 PM (GMT -6)   
Great news Sonny and how in the world did you get it fixed to attend GMPFH at the same time. Move the goal post Jeff, Sonny is on the way.
Michael

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 6/16/2011 5:16 PM (GMT -6)   
Thanks guys. I see Jeff hasn't weighed in yet. Sure hope he lets me park in the driveway instead of down the street at the dead end.

David, I will be interested to see what you new doc has to say about this trial. Keep us all informed please.

Sonny
60 years old - 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
PSA .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 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2
4/10/11 PSA 3.8
5/19/11 PSA 4.9

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/16/2011 5:23 PM (GMT -6)   
Sonny, this new doc seems very progressive and on top of things. I look forward to his opinion on your trial. As you well no, my cancer has been acting very agressive, considering that like you, I blew right past surgery and SRT, and its definitely on the go as we speak. If this test has any ability to make some sense out of it, then it would aid both my doctors and myself into making any future treatment decision. Sure you are hoping for the same thing. Perhaps if it works out, we can be doing it during the same time frame. It is still my intention to make the NY gathering for the first time this fall.

Hope Lynn is doing well today. We still think about her and talk about her (and your situation) all the time.

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 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, 6/11 5.8
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

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/16/2011 5:33 PM (GMT -6)   
Sonny, he has offered to let me sleep in the barn. Isn,t that nice of him? I gather it is off to the side , wired and everything.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 6/16/2011 5:57 PM (GMT -6)   
Sonny ,

Oh we can always make space for you. I can add another driveway.

Guys, I gotta tell you. When Sony plugs that thing, in the lights in Western NY dim just a bit. And if you listen real carefully, you can hear them revving up the Niagara Falls turbines just a touch to make up for the load.

He calls it the Beast for a reason. It takes 2 - 20 AMP lines! But the GFMPH campground can handle it.

James C, Don't worry. The barn is completely free of E.Coli - and any other DNA based life-form for that matter.

Jeff
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Glsn 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11 Dry

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 6/16/2011 6:44 PM (GMT -6)   
Yeah James, but if Jeff has fallen down on the job, the chipmunks still rule the place.
60 years old - 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
PSA .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 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2
4/10/11 PSA 3.8
5/19/11 PSA 4.9

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 6/16/2011 6:48 PM (GMT -6)   
Sunny thats great news buddy... James C be careful of that barn.. I have heard stories about that place.

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

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 6/16/2011 7:46 PM (GMT -6)   
Sonny:
very pleased for you - wishing you all the best.
hugs,
BRONSON
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