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Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 340
   Posted 9/25/2011 6:14 PM (GMT -6)   
Hi guys,
 
I'm down here in Orlando at the referral of Snuffy Myers to undergo the three day Ferraheme and f18 sodium bone scan imaging at the Sand Lake facility. The hope is that my very aggressive disease is oligometastatic (less than five significant bone lesions). The imaging is apparently very sophisticated and precise. Once identified the lesions would be radiated and the aggressive ADT3 program would hopefully push me into a durable remission, perhaps even permanent. Even at my advanced stage Snuffy is gearing this treatment plan toward curative rather than management. His grasp of this disease is very impressive and I strongly recommend a consult for anyone on the fence about where to turn. I'm not sure where this journey is taking me but I'll keep posting over the next three days to give everyone the skinny on how this process works. Go Steelers.
 
Jim

Age 61
Northeastern Penna.
11/08/08 annual checkup (3 yrs late) PSA 8.04 from previously 2.7 in 11/05
1/23/09 biopsy 12 cores positive, 10 cores Gleason 7, 2 cores Gleason 8 70% tumor
2/06/09 cat +bone scans clean ..
3/26/09 RRP surgery Post op path .. upgraded to Gleason 9 (5+4), seminal vesicles involved, several positive margins, 2 of 9 lymph nodes positive
8/22/11 bone mets confirmed

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2317
   Posted 9/25/2011 6:18 PM (GMT -6)   
I don't know about the Steelers, but go bone scan imaging! I sure hope this works out well for you. Curative is a beautiful word.
Age 66
Dx June 2010.
PSA rose for 3 years to 6.2
Bx shows cancer in 6 of 12 cores, all left side
Gleason 7 (3 + 4)
Bone scan, CT scan, rib x-rays negative.
DaVinci 8/20/10
Negative margins; negative seminal vesicles
5 brothers, ages 52-67 ; I'm only one with PCa
Continence after 7 weeks. ED continues.
PSA 1/3/10: <0.01; 6/12/11: <0.01

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 1821
   Posted 9/25/2011 6:54 PM (GMT -6)   
My best to you Jim and I sure like your attitude.
Michael

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 2424
   Posted 9/25/2011 7:09 PM (GMT -6)   
Jim,

Everyone back in PA is cheering you on.

Sorry we kept missing each other on the phone. Make sure you call me when you're back.

All the best to you....

Talk soon,
Jerry
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation
March 2011 PSA Rise/scan indicates spot
April, 2011 Casodex / Lupron
May 2011 Radiation to pelvic bone

PSA History:
-----------------
Nov. 2009 4.30
2010 <.05
March, 2011 .09
April, 2011 .06
July.2011 - Sept. 2011 - <.05 (T - <15)

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 977
   Posted 9/26/2011 7:01 AM (GMT -6)   
Good to hear from you Jim. I was thinking about you the other day and was going to send to an e-mail to see how you made out with your consult with Dr Myer. Looks like things went will and I am very glad that you have a curative treatment path to follow. Please keep us posted on your treatment experiences at Sand Lake. I may be going that route if my SRT doesn't work out. Best of luck.BB
Dx Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4)
Robotic RP March 2009
Path Report: T2c, G8, organ confined, neg margins, lymph nodes - tumor vol 9%
PSA's < .01, .01, .07, .28, .50. ADT 3 5/10. IMRT 7/10.
PSA's post HT/SRT .01, < .01
End ADT3 5/11 PSA < .01

Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 340
   Posted 9/26/2011 3:24 PM (GMT -6)   
First day of imaging went well but slow and tedious. Infusion of Ferraheme took about 30 minutes but the waits in between proceedural steps are long and really test your patience. Spent about 5 hours in the facility and was in service for about 50 minutes. Made sure that I got a copy of any imaging to carry out with me. (never skip this step). Bravo didn't speak with me. One of his understudies came in to give me the skinny on the program. Myers is still negotiating with my Ins co for some reimbursement (out of network no contract) but I'm not optimistic on that front. Tab was $6800 up front. Upside is that we're still aimed at a cure even in my advanced state. May have to settle for less but I have a busload of hope and what I believe to be a gifted physician. Let's see where this takes us. Tomorrow I'm up in the Maitland facility for more imaging.  For all my brothers out there who have to go to bed and wake up with this beast of a disease, stay tuned.  I'll keep you posted on the good, the bad and the ugly.
 
Jim

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 2424
   Posted 9/27/2011 4:06 PM (GMT -6)   
Jim,

How long do you have to wait for the results and the subsequent radiation?

Where will the radiation take place? In Florida?

Why is this the only place that seems to do this?

Sorry for all the questions.

Thanks,
JL
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation
March 2011 PSA Rise/scan indicates spot
April, 2011 Casodex / Lupron
May 2011 Radiation to pelvic bone

PSA History:
-----------------
Nov. 2009 4.30
2010 <.05
March, 2011 .09
April, 2011 .06
July.2011 - Sept. 2011 - <.05 (T - <15)

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3137
   Posted 9/27/2011 4:40 PM (GMT -6)   
I think alot of people would be interested in knowing what is found out and handled in your case, I am really curious about the results of this type of scanning.  Myers is probably amongest your best choices for an onco doc in a situation like this, so Bravo to put a pun on that.  Hope you are fortunate in this and show to others what might be possible. You wouldn't get this scan at the top facilites in the nation nor would they even mention or endorse it (clue??), nor would you get as open minded a doc as Myers for alternative protocols.  Best to you.

Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 340
   Posted 9/27/2011 4:44 PM (GMT -6)   
The second day of this saga finds you at the Maitland facility. The MRI imaging is intense and very taxing. Maybe just one notch down from waterboarding.  They strap you down very tightly to the deck with boards on top of you and slip you into the smallest MRI tube that I have yet encountered. You are instructed not to breathe in such a way that causes your belly to move at all. You are in the tube for slightly over an hour. If you can successfully complete this regiment you are done for the day. If not you are sent back to the Turkey Lake facility for a modified version of the program.  Thankfully I did very well and I am left with only the F18 sodium bone scan tomorrow.
Bravo interprets the data and apparently it takes a few weeks to get the results. Fasting and preps are required for the first two days. With those now out of the way I did a few martinis at the pool to wind down and chill out this afternoon. Probably breakin' my diet tonite and stuffin my face also. (don't tell Snuffy) I'll keep posting on this for those interested. Jerry, Ill call you on my return to swap data. Keep on truckin' guys.
 
Jim
Age 61
Northeastern Penna.
11/08/08 annual checkup (3 yrs late) PSA 8.04 from previously 2.7 in 11/05
1/23/09 biopsy 12 cores positive, 10 cores Gleason 7, 2 cores Gleason 8 70% tumor
2/06/09 cat +bone scans clean ..
3/26/09 RRP surgery Post op path .. upgraded to Gleason 9 (5+4), seminal vesicles involved, several positive margins, 2 of 9 lymph nodes positive
8/22/11 bone mets confirmed

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 5908
   Posted 9/27/2011 4:48 PM (GMT -6)   
JL,
Here is Sonny's thread that discusses the procedure research he did. Should cover your questions.
 
http://www.healingwell.com/community/default.aspx?f=35&m=2108041
Moderator - Prostate Cancer
(Not a medical professional)

DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 340
   Posted 9/30/2011 5:37 AM (GMT -6)   
Completed the three days of imaging at Sand Lake. Last day was a Sodium F18 bone scan. They gave me all of the disks. The written reports will take about a week I believe. Got my Zoladex shot yesterday. Plan is to target radiate and full ADT3. Hope it works. How long before I start picking up the side effects from the shot?   I thought it was given in the butt. This was in the abdomen.
 
Jim

Age 61
Northeastern Penna.
11/08/08 annual checkup (3 yrs late) PSA 8.04 from previously 2.7 in 11/05
1/23/09 biopsy 12 cores positive, 10 cores Gleason 7, 2 cores Gleason 8 70% tumor
2/06/09 cat +bone scans clean ..
3/26/09 RRP surgery Post op path .. upgraded to Gleason 9 (5+4), seminal vesicles involved, several positive margins, 2 of 9 lymph nodes positive
8/22/11 bone mets confirmed

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3137
   Posted 9/30/2011 7:17 AM (GMT -6)   
Zoladex is a pellet like implant to the belly area, will cause a nice black and blue spot for perhaps 1 month or longer (but big deal on that). Lupron is liquid and usually injected into the butt area. This is for others whom might not have known such, I know first 'gland' (lol) because my uro-docky switched me from zoladex to lupron thereafter, the only reason he did was, ...well I noticed the billing $700 more per shot (bless his heart for living his american dream). I fired him later in 2004, the love of money affair ended.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 3732
   Posted 9/30/2011 11:54 AM (GMT -6)   
Jim,
Good luck on your scans. There is new interest in oligometastic cancers, and Dr Myers is at the forefront of this in PC. Some think that this type of cancer is a transition between localized PC and systemic PC. I think this is defined by Myers as less than 5 spots that are locally identified with current scanning technology. He feels that in this stage the PC is still "cureable" if the specific areas are identified and either radiatied or removed along with HT. This fits well in what Tony has been preaching about lymphnode removal at the time of surgery and the survival benefit that has been demonstrated.
If this concept proves true then there is hope for a lot of patients that are considered advanced, but still may be in the "curable" stage.
There is a post on Healthboards from a patient that has been on ADT3 for 10 years and just had a consult with Dr Myers and will be following the same steps that you are with the USPIO. Myers feels that he still can be "cured" after all this time.
JT
66 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, 4 weeks of urinary frequency and urgency; no side affects since then. 2 years of psa's all at 0.1.
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