The wisdom of Dr. Strum on todays P2P-patient requested help request

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zufus
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   Posted 4/29/2011 6:15 AM (GMT -6)   
You can go to P2P or somebody herein could give the link, it is a really wise read on a patient whom is not analyzed enough into his recent psa level and limited testings and a uro-doc is kind of jumping the gun, but the patient is not totally blind in this and has great questions.
 
If you don't know much about Dr. Strum, that is a  pity because he is very likely the most experienced oncologist in PCa patients and revealing proactiveness for patients. He has 4 decades of experience in PCa, helped bring casodex to the USA with Dr. Labrie and Paactusa.org for Llyodd Ney the founder. Also has experience in pathology and has collaborated with Dr. Bonkhoff on specialized pathology (molecular pathology'), which is a level most patients know almost nothing about, so far. I linked some of their collaborated writtings before, but here is it:  http://www.yananow.org/Mentors/BonkhoffStrum.pdf
another great one on pathology is: http://www.nature.com/modpathol/journal/v21/n2s/full/modpathol200811a.html  (Dr. Rubin) 
 
Here is a section of his thoughts to this patient at P2P, not the full context of the whole reply..so do look for the P2P, I happen to admire all his efforts to help patients and tell us the blanking truth.
 --------------------------------------------------------------
 
Medical Miranda for the Patient (Dr. Strum's words at P2P)

This is your life. You have the most to gain from
excellent caring and treatment, and you have the
most to lose from the lack thereof. Your
relationship with your physician should be one of
co-partnership for optimal health outcomes.

* You have the right to be informed as much about this disease as possible.

* You have the right to an unbiased discussion of treatment options.

* You have the right and the expectation of an
honest appraisal of your health status.

The above was written by me years ago and perhaps
should have become legislated.  It is not the way
medicine is practiced by most doctors.
----------------------------------------------------------------------------(my words below):
DID you catch the last sentence....I have been saying this for years...also, having gotten 8 opinions, some of them blantantly biased, agendad. I had a uro-doc whom loved cashin on me and I fired him back in 2004/5.  His book inspired me to question everything also and is still a great resource. Glad to see him respond on P2P, he isn't holding back on his thoughts.
I believe his wisdom on PCa is superior, you can believe what you wish...he has seen it all.
 

Post Edited (zufus) : 4/29/2011 6:21:10 AM (GMT-6)


compiler
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   Posted 4/29/2011 9:06 AM (GMT -6)   
>>>>>>>>>>>>>
You have the right and the expectation of an
honest appraisal of your health status.

The above was written by me years ago and perhaps
should have become legislated.  It is not the way
medicine is practiced by most doctors.
>>>>>>>>>>>>>>>>>
 
I realize Dr. Strum is God and his words handed down from the Mountain is always the Truth.
 
Strange that almost all of my doctors have always SEEMED honest to me.
 
Mel

zufus
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   Posted 4/29/2011 12:06 PM (GMT -6)   
No problem Mel...I also went to Dr. Menon and I actually praise him for denying me surgery, because that was righteous with my stats/scenario. But that was another mountain and a different journey in the Jungle of PCa. Let's hope you don't have to consider listening or seeing any of these celebrity type docs. I have a local onco-doc, no celebrity and very righteous, so I am a happy camper.

My uro-doc seemed honest too, until I caught his mistakes and games...then fired him.

compiler
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   Posted 4/29/2011 12:48 PM (GMT -6)   
Strum, Myers, and Stolz can all be called "celebrity type docs," whatever that means. I think I will be seeing Stolz and Hussein, down the road, as I've mentioned earlier.
 
In fact, I am debating whether or not to consult with them after my SRT but BEFORE my post-SRT PSA. My reasoning has to do more with scheduling/planning.
 
For example, if my post SRT PSA is very bad, then there would be pressure to do something immediately (ie: consult). Well, it may not be easy for me to see Scholz from a logistical perspective (plane flights at a reasonable price and Scholz's schedule).
Hussein is hard to book, too.
 
The only thing I have booked now is my local urologist in mid-May. I want to make sure that she would be willing to go along with any protocol determined by my "celebrity" doctor.
 
Mel (a righteous poster!)
 

Casey59
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   Posted 4/29/2011 1:08 PM (GMT -6)   
compiler said...
 
Mel (a righteous poster!)
 
 
 
Mel, I think it's downright un-righteous and a severe violation of protocol to self-declare righteousness.  You are in the penalty box!

zufus
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   Posted 4/29/2011 1:34 PM (GMT -6)   
Casey- doesn't puck around when a hockey game is insight, I dig the fun comments too...hey I went to fight and hockey game broke out (LOL). Casey all is good with us...atleast on my side.

Mel- I bet John T could hook you up with Scholz on a phone consult basis, just to review your case, along with email data sent prior....then no flying and TSA groupe therapies to happen. Do you believe in groupe therapy? Are those flying the 'friendly skies'....(NOT).

So what did you think of Hussein the onco at U of M???

zufus
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   Posted 4/29/2011 2:00 PM (GMT -6)   
Good to see you here in the flesh again on H.W., I am very impressed with what you have accomplished without having any insurance, or necessarily any prior PCa knowledge or guidainces as to what choices do you make and in an especially bizarre PCa scenario...botched and incomplete biopsies...limited biopsy data and first doc(s) wanted to completely gut you out- bladder and prostate???? They witheld HT therapies way to long...and were in effect negligent for so doing (my opinion, but smell the PSA levels)?

You should tell the part about these genius docs whom let your PSA level get to 130+(with known monthly doubling time prior) and did not even put you on casodex or anything...but had other designs on your treatment choices?

Now to see that you have responded this well with casodex and off cycle approaching one year and maintaining decent PSA level, is a revelation. No catheters and peeing like a race horse ever since it fell out, after casodex attacked the PCa tumors. I would love to see the expression on the original docs face, as to what you did and where you are now...with quality of life and many further options, if and when you might need them. Go figure!

compiler
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   Posted 4/29/2011 3:40 PM (GMT -6)   
Zufus:
 
I don't know about Hussein. I was neither impressed nor unimpressed when I saw her. But, at the stage I was at, everything was quite clearcut. She advocated ART but I explained why I chose to wait and she understood that. There were no problems. I didn't see her as a brilliant doctor at that time, but supposedly she is.
 
For an initial appointment with Dr. Scholz, I would much rather see him personally. Perhaps (probably) additional appointments might be telephone-based.
 
I have already submitted my new patient forms to his office and they are ready and willing to make an appointment. At least that was the situation 6 weeks ago. But at that time I was starting SRT.
 
Mel

zufus
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   Posted 4/29/2011 5:15 PM (GMT -6)   
I have not read all the SRT discussions on your journey, are you doing alright with that?
I have used Dr. Scholz for years and years, and walk like an Egyptian with his prescription, for my feet (LOL), The book back then was 'The Foot Snatchers'

You can see his videos so you get an idea of what he is like, surely you have done that. I like guys with the guts to be transparent...

compiler
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   Posted 4/29/2011 10:47 PM (GMT -6)   
Zufus:
 
Yes, I have seen some of his videos and I am impressed.
 
Have you actually consulted with Dr. Scholz?
 
Mel

zufus
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   Posted 4/30/2011 4:58 AM (GMT -6)   
No but would consider doing such: I have had correspondence in the past with Dr. Barken (like his philosophies on doctoring), RCOG.com (radio therapy clinics of Georgia), Dattoli in Florida, one of my opinions was from U. of M. for radiations (he was my second choice for IMRT) Dr. Sanders or Saunders (looks like he retired perhaps). Contacted Dr. Fred Lee way back, probably should have went to see him...I already had done biopsies...and when his gal pal mentioned rebiopsies to get his input on my case, I backed off and went looking elsewhere.

I also contacted Rick Proffitt at paactusa.org and his free discussion on my case and then joined their group and newsletters.

Now the docs fired:
Urologist from Michigan Urology Institute (a righteous firing), errors, agenda, cashin heavily

Uro-surgeon referral from above doc, Doctor K., tried the slam dunk approach of guaranteeing me curative and 1% chance of incontinence...didn't pass the newbie smell test..fired immediately and went to see Dr. Menon whom said the exact opposite-No Way you are not even a candidate for success surgery (righteous answer and no cashin in on a lamed sheep).

Radiologist from Henry Ford (female)- most righteous firing one day before starting the radiation protocols (caught her lying on my questions), one year later she didn't work there anymore (alien abuction perhaps)?

Onocologist from Henry Ford (female-suburbuan location)- denied me proscar but could not answer my questions about it at all, ADT3 was being using in patients..but their soup **** mentality was Lupron soup only and nothing else for you. So I made my own soup (lol), went back to my uro and demanded the Rx's for casodex and proscar...and got them. Figured if Leibowitz and others are finding it very useful in high risk patients...hey I am a high risk patient, no time for games and ideologies that are one way.

Then I did choose the righteous docs along this pathway....really fun journey...I wished I had it all on tape for others to witness. What exceeded my expectations was my insurance company, I fired anyone I wanted to and no questions and all paid for...that was blanking excellent.

*in my case the only 'they got it all would have been referring to the Billings' (LOL)

compiler
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   Posted 4/30/2011 10:37 AM (GMT -6)   
Zufus:
 
I loved your last line!
 
You've mentioned Casodex a few times. I thought one gets on this drug 10 days before starting ADT, to prevent a flare. Have you been doing casodex alone as the only ADT element?
 
Mel

zufus
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   Posted 4/30/2011 1:43 PM (GMT -6)   
I love the last line to, because it is politically incorrect but validated to the max.

No I did casodex when I got onto ADT3, because genius uro-doc had a flare for doing the wrong things, so zoladex first given with nothing else, no casodex prior...back then I knew close to zero and never knew the difference. Maybe you can see why the s.o.b. needed firing. I really felt the full effect when he switched me from zoladex to lupron, and I didn't want to switch, but I saw the billing at the desk, then I saw his wisdom and full caring. (went from $1300 per shot to $2100 per shot) Blue Cross gets ripped off all the time, only we get the premiums. (So yes my uro 'got it all'...and without surgery-LOL) Had that been my actual cash directly from my wallet, he might of had his prostate removed by a novice in the parking lot (LOL).

compiler
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   Posted 4/30/2011 4:05 PM (GMT -6)   
Zufus:
 
Is there any difference between zoladex, lupron, and eligard? (Besides cost)
 
Mel

zufus
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   Posted 4/30/2011 7:43 PM (GMT -6)   
Oh putting me on the spot for LHRH type drugs, well minor differences...all about the same for side effects and effectiveness, as far as I have heard. I have done Lupron and Zoladex, basically the same side effects, just differently administered and Lupron cost additional $800 from my nice uro-doc back in 2002-2004.
 
LHRH agonists or LHRH-A:  Lupron, Zoladex, Trelstar LA, Viadur, Eligard, etc.
 
(Zoladex is an implanted like pellet-stomach area I used it there-black n blue for awhile at the implanted site)' Lupron usually shot of liquid in the behind, Eligard has implants like a pellet or small stick and sometimes put into your shoulder arm area(or other places) as a 1-year implant, also they have 6 month implants). The others come in various doseages so you might have 1 month, 3, 4 and such to choose from.
 
LHRH antagonist:  Abarelix, Cetrotide   (no T surge on these) assuming you can still get these
 
Degarelix (GnRH):  newer FDA approval  (heard it was one month deal from someone on this board), has no T surge and so casodex is not required prior to using this.  This costs more than Lupron, I have heard (no numbers on it yet).  Might even be superior some LHRH drugs, who knows, it is very new still. (Canada Rx  80mg= $399 ,or 120mg= (2) injections=$750
Lupron 1 mo. from $199, same source in USA dollars outright purchases.)
 
I can foresee you will not like being on any LHRH type drug, just my guess...but sure it can be done and many guys have done so. If you don't want any black n blue marks, then Lupron or others that are liquid types might be your cup of tea. Not sayin I know all about these totally as the expert, I am not like Forest Gumps, shrimp boat fisherman talking about all the ways to prepare shrimp (remember that oratation)-LOL.  I haven't tried them all...and don't plan on it either.

Post Edited (zufus) : 4/30/2011 7:54:59 PM (GMT-6)


compiler
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   Posted 5/1/2011 10:54 AM (GMT -6)   
Zufus:
 
I'm sure I will not like being on any of the ADT drugs. Who does? But I don't think I have a choice if SRT fails.
 
It seems to me it makes sense to start with a 30-day shot (after Casodex for 10 days or so) in case the SE are intolerable.
 
I have no idea how my insurance will respond to those drugs -- that may be another SE!
 
Mel

compiler
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   Posted 5/1/2011 12:50 PM (GMT -6)   
And what do I conclude?
 
Suppose PSA starts at 4.5 and then is 2.0?
 
Does that mean I just stay on Casodex and don't add say Lupron?
 
Suppose it goes to 0.02? Same question.
 
Suppose it goes UP. Does that mean Lupron won't help?
 
Mel

compiler
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   Posted 5/1/2011 1:03 PM (GMT -6)   
Well, Ohio State, I was under the impression that first you do Cas. for 10 days and then Lupron.
 
If so, then why do the two PSA tests...UNLESS the results may alter that plan.
 
Are you suggesting the possibility that one might just be able to stay on Casodex alone?
 
Incidentally, with the usual scenario (my first sentence) does one stay on Casodex in addition to the Lupron?
 
Mel

compiler
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   Posted 5/1/2011 5:47 PM (GMT -6)   
And same to you, Ohio State!
 
Mel
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