For PC-- when does the TX become non-standard

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compiler
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   Posted 2/23/2011 1:34 AM (GMT -6)   
OK, I keep hearing about these great docs who always think outside the box and try this and try that.  (Strum, Myers, Stolz, etc.). Frankly, at some point this can be very useful as they do seem to keep their patients alive for a long time. In fact, it seems to be part science, part medicine, and yet part art. For example, when to (or whether to) try Leukine, or DES, or this or that. When to try chemo? Do it early?
 
So, with that preamble, here is my question.
 
There seems to be a generally accepted standard of care (this represents thinking within the box). Say we start with surgery (yes, I know there are other primary treatments, too). Surgery fails so we then do SRT. SRT fails and so the curative bullet is gone. So, we then try and turn this into a chronic long-term thing rather than "the end."
 
We then proceed to more standard treatment, to wit HT, probably Casodex too (my understanding is that the Casodex first for a week and then HT is added). Now, is this the point at which the treatments become an art? In short, what is ADT2 and/or ADT3 and is this still standard? Then there's the question of intermediate ADT. I assume this is done if everything works great for 2+ years and the testerone level is low?
 
Does the art really kick in when things become refractory (ie: HT starts to fail)? Or is there still a generally accepted tx. protocol?
 
I hope this rather long-winded question makes sense!
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .
Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64
Surgery: Dr. Menon @Ford Hospital, 1/26/10.
Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- in progress. PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06; 1/4/11-0.13 CRAP!

zufus
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   Posted 2/23/2011 5:49 AM (GMT -6)   
cool   Mel- looks like you are looking into the Twilight Zone area of PCa...reality is hard to separate from fiction, the known and the unknown. Truth is, there are no rules in PCa. Generalities and common practices, yes. 

Post Edited (zufus) : 2/23/2011 6:12:54 AM (GMT-7)


LV-TX
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   Posted 2/23/2011 7:54 AM (GMT -6)   
Agreed to what Zufus said.

Mel if by chance that the SRT fails, then you will normally be treated with the standard treatments recommended by the AMA. Most doctors will follow those guidelines for treatment protocols. Reason being is medical insurance, malpractice insurance and many times the association or hospital the doctor works with will require that AMA guidelines are strictly followed.

To work "outside the box" you will need to volunteer for any available clinical trial that maybe going on at the time.

Think positive that the SRT will work and you won't need to enter the "Twilight Zone"
You are beating back cancer, so hold your head up with dignity

Les

Robotic Surgery Sept 2008
PSA increasing since January 2009
Current PSA .44 (29 months)
PSA Doubling time approx. 6 months
Clinical Trial - SRT begins 3/01/11

daveshan
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Date Joined Jan 2010
Total Posts : 363
   Posted 2/23/2011 8:44 AM (GMT -6)   
Mel,
Gotta admit when I first saw the title I thought "At diagnosis" and wasn't trying to be funny.


Realistically if one starts on a surgical path IMO it's right after salvage, from my research 90% of the docs go with the standard ADT therapy but some think out of the box. For those on a radiation as primary the next step is the Zone.

I hope the SRT works and this is just an exercise in speculative thinking.
07-06 PSA 2.5
01-08 PSA 5.5
09-09 PSA 6.5
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5
03-01-10 Age 55 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson
03-16-10 Path' G-8 (4+4+5) Bilateral involving 21% of left lobe, 3% of right lobe, SVI, Focal positive margin, pT3b NO MX

All PSA as of 1-25-11 <0.04

John T
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Date Joined Nov 2008
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   Posted 2/23/2011 11:49 AM (GMT -6)   
Mel,
ADT3 and intermittant HT are fast becoming the standard. It took about 15 years to reach this point as the doctors you mentioned were doing it for years while everyone else was on continuous Lupron.
The "ART" part of the treatment is the monitoring of the various markers that indicate how the HT is working and what the cancer is doing and making adjustments. This is more art than science. Reducing side affects is also part "art".
By the time the majority of the medical profession begins using these, the doctors you mentioned will be using something else; I know Scholz is using Abatrone with great success.
I think there is a significant advantage going to a doctor that treats only advanced prostate cancer patients and sees 1500 of these types of patients a year. Most doctors only treat a handful of PC patients along with many other types of cancers and just can't conduct the trials or obtain the PC knowlege in spotting varients or other non standard conditions.
The thing I liked about Scholz was that he insisted I take a echo cardiogram, bone density and a colonostopy before any treatment. He said since most of his patients die from something other than PC he would be remiss in only treating the PC portion of a patient's health.
JT
65 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, no side affects and psa .1 at 1.5 years.

Purgatory
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Date Joined Oct 2008
Total Posts : 25364
   Posted 2/23/2011 12:47 PM (GMT -6)   
John, I liked your answer but near the end you said:

The thing I liked about Scholz was that he insisted I take a echo cardiogram, bone density and a colonostopy before any treatment. He said since most of his patients die from something other than PC he would be remiss in only treating the PC portion of a patient's health.


Isn't that just a fancy way of saying that Scholz was just "cherry picking" his patients for better results? I know that Walsh and some of the other "brand name" and "specialty" doctors are accused of that 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 marg
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 11/10 Not taking it
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 9/23/10

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 2/23/2011 1:23 PM (GMT -6)   
compiler said...
Or is there still a generally accepted tx. protocol?
 

Mel, are you familiar with the NCCN Clinical Guidelines in Oncology (for Prostate Cancer, in this case)?

 

In case you are not familiar, here’s a brief background (which I’ve pieced together from various sources): 

The NCCN developed clinical practice guidelines for oncology that set the standard of cancer care in the United States.  The National Comprehensive Cancer Network (NCCN), an alliance of 21 of the leading cancer centers in the United States, has emerged as a leader in setting the standard of care and impacting the practice of oncology in the United States.  NCCN has established more than 45 multidisciplinary, disease-specific committees and panels [one on Prostate Cancer, for example] and developed more than 100 guidelines that are updated annually and well publicized on the NCCN Web site (www.NCCN.org), in JNCCN–The Journal of the National Comprehensive Cancer Network, and at various national and international events.  The NCCN Clinical Practice Guidelines in Oncology™ are developed and updated through an evidence-based process with explicit review of the scientific evidence integrated with expert judgment by multidisciplinary panels of physicians from NCCN Member Institutions.

The NCCN publishes two versions of the Guidelines, one for patients, and another less verbose version for clinicians (which, by the way, an oncologist friend of mine says he uses has his reference tool).  Both versions are free and available online via the links I provided (you may have to register to access these links; which I’ve done…it’s free; I have both in pdf format and could email to you, if requested).

Last week, I sat through the presentation by Dr. James Mohler (from Roswell Park Cancer Institute) who is chair of the NCCN Guidelines Panel for Prostate Cancer.  He presented the Guidelines changes implemented this year where were primarily twofold:  i) expanded recommendations regarding AS, and ii) additional treatment options for metastatic PC.

The Guidelines have been processed into relatively easy-to-follow flowcharts based on treatment stage.  However, since prostate cancer is a complex disease with many variants (queue you favorite zufus description here), it’s a little complicated to follow.  The guidelines present the “standard of care”, so keep in mind that some doctors will depart for various reasons…but good to be grounded in the “standard.”

 

Hope this is informative…I wanted my 1,000th post here at HW to be a good one!


compiler
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Date Joined Nov 2009
Total Posts : 7197
   Posted 2/23/2011 3:24 PM (GMT -6)   
Thanks Casey. I think I've seen that and I should look at it again!
 
John T: Does someone like Dr. Scholz accept patients like me (based in Michigan)? It might be worth the travel to consult with him if it only requires 1 or 2 trips a year. (Note that I am thinking long range -- I would only consider that if SRT was failing).
 
Does he accept various insurances?
 
Mel

compiler
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Date Joined Nov 2009
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   Posted 2/23/2011 3:27 PM (GMT -6)   
David:
 
Why does that sound like Dr. Sholz (sp?) is cherry picking? Many doctors might  do an overall physical exam.
 
It would seem like if he is dealing with advanced PC patients, he would not be cherry picking almost by definition.
 
If he had you do one of these tests and a problem developed he might want you to resolve that problem first, or maybe not. I guess if he rejected everyone who had a problem show up, then maybe he was cherry picking. But I think that's an unfair accusation, based on what John said
 
Mel

Purgatory
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Date Joined Oct 2008
Total Posts : 25364
   Posted 2/23/2011 5:06 PM (GMT -6)   
Mel, calm down. "A", it was address directly to JohnT, and "B", wasn't accusing anyone of doing anything, I was simply asking a question. I still think its a valid question. And I said I liked his post.
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 marg
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 11/10 Not taking it
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 9/23/10

compiler
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Date Joined Nov 2009
Total Posts : 7197
   Posted 2/23/2011 9:03 PM (GMT -6)   
David:
 
Actually, I am quite calm.
 
If a doctor orders a few tests to determine a patient's overall health, that does not have a nexus with cherry picking. On the contrary, that could be thoroughness and due diligence.
 
I guess it depends what the doctor does with the test results.
 
I don't understand your point: ""A", it was address directly to JohnT."
 
I didn't realize it was a private post.
 
Mel
 
 

zufus
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Date Joined Dec 2008
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   Posted 2/24/2011 6:35 AM (GMT -6)   
Mel- remember I posted my Michigan friend in our local support group doing Leukine? I also mentioned he sees Dr. Scholz maybe 1-2 times a year, where he got this Rx. So, the answer on your question was already on H.W. awhile ago. YES, Dr. Scholz and any of those others might see and take patients from anywhere. That is another reason people go to these guys, because of their superior experiences with high risk scenarios.

Scholz did not cherry pick my friend for Leukine, he is around year 14 in PCa, and 4-5 years ago failed on Lupron and similar things. He has thus far gotten 4 years extended quality of life using Leukine and it still shows signs of working. He claims no side effects and excellent control, he looked no different to me in the support groups than he did 5-6 years ago. His wife also goes to the meetings and is very knowledgable on PCa.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), ct and bone scans looked clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed again and still working

compiler
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Date Joined Nov 2009
Total Posts : 7197
   Posted 2/24/2011 7:22 AM (GMT -6)   
Thanks Zufus. I did chat at length with that fellow from your support group. Not sure if he is the same one you are talking about (I think not). He seemed pretty knowledgeable.
 
I will at some point look into seeing Dr. Scholz.
 
Mel

zufus
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   Posted 2/24/2011 8:26 AM (GMT -6)   
The guy you talked to in Michigan is not the guy on Leukine, that is another guy from our group thing. But the guy you did talk to has been battling PCa for years, he just went unto estradiol patch method, which I found very interesting.

I would consider seeing Dr. Scholz too, especially if I had more money for travel and bigger options and opinions. Since I have had a number of favorable years I am not currently looking to change anything at this immediate juncture, but in PCa that is always subject to change. I would have loved to have seen Dr. Strum, but that is off the options cause he retired. I also like Myers, Sartor, Lam, and a few others, as the A-list.

John T could fill you in on Dr. Scholz, he does allow phone consultation if you are already a patient, and John mentioned it was a reasonable deal...I will leave it there.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), ct and bone scans looked clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed again and still working

compiler
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Date Joined Nov 2009
Total Posts : 7197
   Posted 2/24/2011 9:58 AM (GMT -6)   
John:
 
Can you chime in RE: Dr. Scholz
 
Mel

John T
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   Posted 2/24/2011 11:59 AM (GMT -6)   
David,
Since Scholz treats mostly advanced cancer patients, he doesn't cherry pick. He usually gets by far the very worst patients. He knows that HT will affect cardio and bone density and by giving an echo cardigram and bone density he knows up front of any problems and also has a baseline in which to monitor things. Even for surgical patients he will look for things like excess scaring or heart related issues that could affect outcomes. He explains what and why he is doing it. His initial write up of all my health conditions was the most through I had since I had an all day executive physical done in the early 90's at scripts.
Mel,
Many of his patients are from out of town. His office is only a few miles from LAX which makes it convenient. He takes all insurance including Medicare. I have a phone consult with him yearly that costs $45.
Even if I were being treated elsewhere I would use him for a 2nd opinion and to bounce things off. He's also a good reference on which doctors to use and he's pretty straight forward in telling you if a doctor you are considering is good or not. I never felt rushed during an office visit and he made sure all my questions were answered. With most of my other doctors they were walking away down the hall, and I would be chasing them still asking questions. So far I've had a total of 10 doctors treating me over the past 12 years and by far he is the most knowledgable and through. I live in Idaho during the summer months and would not hesitate to get on a plane to see him if my condidtion changed.
JT
65 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, no side affects and psa .1 at 1.5 years.
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