Meeting with Onco today May 23 - Good Stuff and Lots to Talk About=Great Meeting

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Sonny3
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Date Joined Aug 2009
Total Posts : 2447
   Posted 5/23/2011 11:01 AM (GMT -6)   
I had a really great meeting with my Onco today and a lot was discussed.

I would first like to say that I have complete confidence in my Onco. His reasoning, experience and attitude are in concert with what I think every patient should encounter.

Some of the things discussed this morning will fly in the face of some of the more accepted norms that have been expressed here. So just don't shoot the messenger, okay. Of course I expect dialog and conversation, after all that is how each of us learns and contributes.

First thing when he came in he gave me two different charts/scales and told me that my PSA doubling time was between 8+ and 16+ months. 8 if we go back to September 2010 and 16 if we use all of the tests since January 2011, which is 4 tests.

I asked if he was going to talk about or suggest HT. His response was NO, not at this point. I asked him at what number would he recommend it. He said that there is no magic number. There are three things that would warrant moving forward with HT. 1)Tests indicating Symptomatic Met activity, 2)Tests indicating Asymptomatic Met activity and 3) A PSA doubling time of 3 months or less.

My current bone scan done last week shows no MET activity at all. Neither in or around the previously treated MET or any new activity.

It was here that I brought up the subject of the F-18 Sodium Fluoride PET/CT clinical trial. I had brought a copy of the trial outline for him to read. I asked him if my assumption was correct in that of the available scans/tests the nuclear scan was at the bottom and the F-18 was at the top. He said yes. I also reminded him that I had asked why was he not using the F-18 again this year? Did the fact that Medicare (thence the ins industry)would not approve the scan have any influence on the tests he had ordered. He said absolutely.

He said if I could get on this trial, even if I had to pay my own travel expenses, I should jump on it as soon as possible. The information would be invaluable to me personally and his ability to treat me going forward. He said that he would have more information from this than he could hope to have with any of his other patients.

Additionally, my participation would be of benefit to the PCa community at large. This is a valuable trial if the hopes of the medical community and the PCa patients are to be realized of having this tool available for all. Needless to say, I have already placed a call to the NCI this morning.

I then asked him something I had forgotten. What part of his study and practice is made up by PCa. He said that about 70% of his work is with PCa and the remaining 30% is Hematologic.

So this opened the door for a conversation about the Feraheme/MRI test. I told him in detail what I knew about the Combidex trials and now the work by some to use Feraheme as a contrast agent.

This was a lengthy conversation to say the least. First thing he said was that Feraheme is only used as a last resort in dealing with Iron Deficiency Anemia. The potential for side effects and life threatening complications make it the last resort.

I told him about the clinical trial that was being conducted by the NCI and the selection criteria of being diagnosed with PCa and having surgery scheduled. He said that this was at this time the only way that such a trial made sense. If they found suspected nodal involvement, these nodes could be removed for verification at the time of surgery. There is no better way to test the outcomes of such scans/tests than having the node in hand for study. It would also potentially signal the possibility that the PCa was not organ confined before surgery.

The semi-trial that I had discovered would not have the same value. How are the results verified? And, it is already know that I have PCa that had escaped the organ before surgery. There can be very little doubt that my PCa is systemic. It is after all how the crap is moving around and finding my bones in the first place. The test would be of little value to me and the risks are far too great. Additionally, we discussed that the doctor that had talked with me said that once the nodes are identified via the scan they are radiated and may or may not be followed by HT. I don't remember his exact words, but there was a little smile on his face when he said, How do you radiate something when you have no way of verifying the validity of the test to begin with, except through some form of biopsy. The conversation went on for a while, but I felt he had made some very valid points. He added, that there is a rhyme and reason for formalizing trials to begin with. It puts the data in position for scrutiny and verification for all the medical world. Nuff said on that one for sure. He affirmed my thoughts and in fact at one point said that the way it was being done was "Sketchy" at best.

So to recap; my PSA at this point does not warrant beginning HT; I have no new MET activity; he strongly believes that I should get in on the NCI F-18 trial; he will see me in 3 months; he will not schedule any PSA tests until then unless I want them; and I should dump all data related to Feraheme as a contrast agent until more trials and data are accumulated.

Feel free to ask any questions. I am sure I forgot something.

Just putting this out there for information,

Sonny

Post Edited (Sonny3) : 5/23/2011 11:18:29 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/23/2011 11:32 AM (GMT -6)   
Sonny, this post is chocked full of superb info. Should be a keeper for anyone in a similar situation. Speaking only for myself, I have wondered why some men are so quick to jump into HT after SRT/ART as soon as they see a rising PSA. There is still a lot of quality of life issues surrounding HT, and after time, it can go refractory and become useless.

When I have my meeting on Thursday, I will share my findings here, and it will be interesting to see if there's a similar rhyme or reason to our situations.

I will have to dwell some more thinking time on your post and let it sink in. As far as the risky test, I think not doing it is the right decision. It even makes me (just my opinion, no shooters please) question the 2 "experts" that are pushing the test knowing that they are skirting the safety of the FDA. Just my take.

So it sounds like you can go back to enjoying your life for now. The PC monster lost this round with you, even if it is lurking about.

Best to you brother,

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
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

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6893
   Posted 5/23/2011 12:16 PM (GMT -6)   
Looks like my gut feel about the two trials got agreement.
 
The starting point for HT is a new one for me, but it makes sense. I guess it will depend for me on what the next PSA test tells.
 
Good summary. I agree with David, looks like very useful info.
 
My best to both of you.
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 5/23/2011 12:39 PM (GMT -6)   
Sonny: I think this is your bonus for today. :)

Really sounds like you have a GREAT DR that is willing to listen and know when to say I dont know. Lets try this or that.

Always great reading you post.

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

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/23/2011 1:51 PM (GMT -6)   
Yes, I will take bonus days like today. I really feel this guy has a good handle on treating MY specific case of PCa.

As and aside, I just got off the phone with the NCI. They are going to reimburse me for gas/travel expenses. They are looking at the middle of June. I will be there about 8 days. The want me to enter into the arm of the study that receives 2 scans to establish a baseline. Each 1 about a week apart.

They are also excited that I have had 1 previous F18 study and just completed a nuclear scan last week. This will really give them detail for comparison with their scans.

Good things all, I think

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

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 5/23/2011 3:32 PM (GMT -6)   
Wow Sonny, I'm thrilled that you have NO mets. That is absolutely the best news I've heard today, and it makes a bonus day for me as well. I'm impressed with your doc, and the position he is taking with you and the issues at hand.

This entire forum will be anxious to hear how the NCI trial goes, and kudo's on the fuel cost reimbursement. That's a big deal with $4 gas.

We will continue to keep you and Lynn in our thoughts and prayers.

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 : 2215
   Posted 5/23/2011 3:38 PM (GMT -6)   
Sounds like a very productive and positive day Sonny. Great to read your update.
Michael

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/23/2011 3:43 PM (GMT -6)   
K and Michael, yea I am pretty stoked about the day. Already making plans for the trip to NCI.

HEY JEFF aka WORRIED GUY. DID I FORGET TO TELL YOU THAT I WILL ONLY BE about 350 MILES FROM YOUR PLACE WHEN I GET TO BETHESDA. Raise the wires over the driveway and clear a path. The beast may be headed your 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

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 5/23/2011 3:43 PM (GMT -6)   
Sonny:
 
All good news, I'd say!! Glad they are not pushing HT for you.
 
Unfortunately for me, it sounds like they will push for HT regardless of the SRT outcome, because my PSADT is about 2 months. But maybe they will not count the sub-0.1 PSA tests. If that's the case, then maybe they will see what subsequent PSA tests show.
 
Mel

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 5/23/2011 3:47 PM (GMT -6)   
Sonny-
thank you for your posting and very clear writing - some of the things are new to me but I understood the rationale and logic to it - it does look like a bonus day for you - and I agree with David that the PCa monster lost its round and is sent back into the corner -
-have a lovely evening,
hugs to you both,
BRONSON

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/23/2011 3:50 PM (GMT -6)   
Thanks Mel. Don't forget that everything our docs tell us is a recommendation or suggestion. You have to be the one living with their suggestions and effects of them. Just like everything you and I have done to date, they presented the info and we made the decisions.

Come on there 'big dude', don't let them push you around. LOL

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

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 5/23/2011 3:51 PM (GMT -6)   
oh yeah,....and congrats on the HT decision as well. I would have lost that bet huh?

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

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 5/23/2011 4:32 PM (GMT -6)   
Sonny,
You certainly have your act together and you're now contributing to the PCa knowledge bank! Fantastic.
We might be very close during that week. I usually stay in Falls Church, VA when I'm in the area, "visiting". Would you believe the NRA museum?

Thanks for the good news,
Jeff

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 5/23/2011 6:12 PM (GMT -6)   
the nra has a museum? sounds scary.
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

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 5/23/2011 7:43 PM (GMT -6)   
Sonny, when it comes to understanding all this I'm just skimming the mountain tops --- but the tops, like no mets, look pretty good. Best of luck with the trial --- I'll be watching for more good news.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 650
   Posted 5/23/2011 9:52 PM (GMT -6)   
Sonny, can you elaborate a little more on the F-18 and the trials. Apparently, your onco used the F-18 on you last year? did that test find the bone met that was treated? And does the F-18 have the potential of finding a met anywhere or just in bones? would a tumor or healing wound in soft tissue concentrate the radioactive sodium flouride simuliar to the way a rapidliy changing cell stucture in a bone would?
In anycase, that is great you will be able to travel to NIC for this study. I wish you the best.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/24/2011 7:10 AM (GMT -6)   
Ron, F18 is used as a bone imaging agent. It is proving to be a much better scan for finding mets than nuclear scan.

This link is a great read on the test as well as comparison to the 99m TC nuclear scan. Just thought I would pass this along for anybody that wants to understand why my Onco and I are kinda excited about my getting into the NCI trial.

www.medical.siemens.com/siemens/en_US/gg_nm_FBAs/files/whtpap/wp_10_sodium_fluoride.pdf

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

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 460
   Posted 5/24/2011 9:31 AM (GMT -6)   
 
 
Sonny,
 
Great information glad to hear your Onco is up on the latest treatment and not rushing to HT.  I also had a F-18 Pet Scan last July and showed no mets that is why my Onco is not pushing HT on me either.  We are watching the PSA and waiting as he said the cells are there and floating somewhere but until they land we have no way of knowing where they are.  I will be following your trial and thanks for all the information.  Again it is very important to us all to have a doctor who is up on the latest treatments and clinical trials.
 
Jerry1
Age 72 DX 8/13/08, PSA 4.0 - Da Vinci 10/17/08 organ confined, no positive margins or lymph nodes, both nerve bundles taken. Gleason 4+4, PT2A
Cath out 10/29/08 dry 11/19/08
First PSA 3/6/09 >0.1- 3/6/09 0.0, 6/3/09 0.1, 10/15/09 0.3, 12/14/09 0.5. IMRT 1/18/10 First PSA 1.5, 7/8/10 1.9, (not good IMRT a failure) 9/3/10 2.4 11/2/10 3.3 1/7/11 3.5
4/20/11 1.3

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/24/2011 8:20 PM (GMT -6)   
Jerry, thanks for chiming in. I was telling one of our HW guys today on the phone, that I can't remember anyone else here saying they had an F18 scan. It is such an important tool. All of the data I can find says that it is the superior test in looking for mets.

On one hand I am kinda excited about getting the opportunity to have 4 of them done in a twelve month period so that I can really see what is going on. Of course on the other hand, I sure hope they continue to find nothing new to report. I don't mind carrying an ongoing PSA as long as it isn't doing me any harm. But it is what it is in the end.

Still believing, "Every Day is A Bonus",

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

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 5/25/2011 4:55 AM (GMT -6)   
Sonny,

The wires are up.
We have the chablis.
Oh how sweet,
your visit would be!

The basketball backstop is still twisted from your last visit so there's plenty of room. :-)

Jeff (In NY)

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 5/25/2011 6:13 AM (GMT -6)   
Sonny,
I looked up the info on F- 18 and their conclusions sounded great! "Conclusion: 18F-NaF has desirable characteristics as a bone imaging agent, with high and rapid uptake in the bone, along with fast blood-clearance producing images with excellent bone-to-background contrast." I didn't see anything about toxicity, however.

So, I started looking around and that got me thinking of using a radioactive imaging agent that becomes toxic when exposed to a controlled electromagnetic field. The contrast agent points out the Mets and the specially tuned E-field warms it up a couple of degrees to kill the tumor. For example, a microwave is tuned to the resonant frequency of water. That is why you can heat up food in a glass dish and still have the handles stay cool.
The H-O bond length is 0.94 A. The bond length of NaF is 1.92 A. Speaking as an uneducated novice, that difference seems to sufficiently far apart to readily enable selective targeting. I did not study to see if there are other molecules that resonate at this frequency. (Edit: I just thought of NaCl. Its bond length is 2.3 A. That is far enough away so we don't have to worry about it.)
It just seems that if a contast dye is smart enough to find the mets, we should be smart enought to kill them while the dye is there.

Sounds like another potential NIH grant. Ask your doc if he's interested.

Remember you read it here first kids.
J

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 5/25/2011 7:37 AM (GMT -6)   
Jeff, I guess my run-in with your basketball backstop will remain part of the lore her at HW for a long time. LOL

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
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