The controveries on HT therapy, or best when to start, make any differences?

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zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 9/18/2010 8:41 AM (GMT -6)   
We likely will not find a total definitive conclusion in trying to answer this question, although there is 30 year old evidence that it supposedly makes no difference as to when you start which is a continuing controversy onto today and not totally confirmed or defined is my contention.  In Dr. Walsh's book, he is fair enough to show where the old evidence comes from and that it very well is or could be valid still (2001 Book), he also is open minded enough to point out the flaws in a number of those abstracts that are quoted by other doctors and used by them still.  Which many will not admit to seeing any possible flaws or be open enough to say....not enough is totally known at todays juncture. Which I would say the premier oncologist docs would say not enough total evidence known, because of what they do in various protocols, even they are saying they have found surprizes in recent patient histories and newer results, (Dr. Myers comes to mind on recent patient of his).  John T  you mention starting earlier on the PCa  ADPCa population, that makes sense and might even prove to righteous, I am pointing out what mainstream is using as their basis.
 
We also have to remember alot of this data and conclusionary prior evidence is based upon older abstracts, testings and such. Bigger still these findings are usually based upon patients using standard drug protocols, like LHRH or casodex or maybe a combos.  No to many are done on alternative drugs that are found also effective(estrogenics, keto and some others). Add to this, what about mulitple protocols that seem to help a number of patients live longer or beat some of the odds of survival duration(s). Also, add the additions of the latest drugs (Leukine, Abiraterone, MDX3100, etc.)  or chemo's (Cabitzatexal) or Provenge or DCVax the new vaccines(could change alot of duration findings). It could be a decade or more before we have the overall picture on patients with 8-10 yrs.+ history and thus new abstracts, that I would bet show better results than in the past. Most of the clinical trial data found in these newer drugs show improvement data comparitively, already just in only trials useage (usually those people have the nastier stats to prove the drug is worthy for useage, like Provenge...imagine this taken in patients with moderate PCa scenarios...could be astounding..maybe see them get 10 yrs.+ before progression??) Some of those high risk patients got 3 yrs. of real significance, not just 3-4 months.
 
Looking at patient histories like at yananow.net and other cases we can witness....results vary alot...some cases have defied this idea of you have a certain time frame and makes no difference. Patients  have died eventually from PCa, but their journey and duration defied the norms...a good example at Yananow is  Trueman Seamans with Dx psa of  4212 and some bad stats, on average a patient as such might live 2-4 yrs. or even less.  He lived 10 years with some good Oncologists on his case and a few different protocols. Is this an anomalie, well when looking at other patients that leading onco docs are working with, seems to support it is not a total anomalie. Dr. Fred Lee's story is one of most facinating histories I have seen in a contiuing 27 yrs. battle, 25 yrs. of it with (mets) according to Dr. Bob B. his friend urologist said at a prostate group seminar...known mets and perhaps the longest living known mets patient. (I also asked him again to repeat what he said to make sure of his quote....mind blowing in PCa circles). His story I posted before it is on the internet google it the link starts with  (www.rochesterurology...)
 
I could make this a longer drawn out discussion and others herein can add there findings or known information things they have collected and summarized and such. I can't say I know for certain any easy answer on this, I try to assume a more positive mindset (believe it or not)  but always a skeptic and question plenty and especially question mainstream as to when they have definitivy in anything in PCa...the usual findings is plenty of exceptions, unknowns and variables. So, when mainstream hangs it evidence on 30 year old findings and miss things in abstracts and has not even touched on the newer protocols or combo protocols or even like to acknowledge those 'crazy' leading Onco-docs as maybe knowing the biology better than they do. Yeah I gotta question it all, lots of money being made by everbody (usually)...perhaps this is just the way they all like it.
 
It gets to be more like Ripley's Believe it or Not in some of these patient scenarios. It seems some evidence exists of anectdotal remission or cure...rarer than rarer..but even in Walsh's book he does not rule it out when talking about hormone therapies and he is more than fairminded on using DES than many doctors out there...which helps me believe he is a real fair and objective type guy, even though not an oncologist. Alot of urologists apparently disagree with Dr. Walsh (on some matters) as do some oncologists and probably some radiologists.  No 'Easy Button' for patients to press in PCa.  I like the term Twilight Zone where it is hard for people to know are you living in a real world or a fictional place...this limbo land of HT...is a good analogy...I hope most of you can avoid this visit, but you could do it even if you think you cannot.  So what does the sign post up ahead...say!  Hopefully you have non-dectable psa's along your path.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/18/2010 9:01 AM (GMT -6)   
I would love to see a non-biased set of stats, that showed the basic info on just the 28,000 or so men that died directly from PC in the US alone last year. I would like to see when they were dx, their starting PSA - Gleason - Staging, and I would like to see what basic treatment choices they took along the way. And of course, their age at dx, and their age at death. I think they would take some of the speculation out of the subject, and some of the "don't worry - you can still live a long life" steam out of the sails.

My guess (key word: guess) is that these deaths are not all "old men" with very late dx PC. That would be the common impression.

I think some of the examples you mention, now and before would be "abnomoles", they are the exception, not the rule. I am thankful these men are beating the grim reaper, and hope they continue too.

Some survival baffles medical wisdom and medical fact, and we can be thankful for those exceptions, and perhaps studying the exceptions could open a window to learn how to replicate what took place in others. Closer to home, and not the best analogy, least not directly, is in my own case. My surgeon still wonders and asks ,why didnt David ever have ED. He still won't take credit for it. It makes no medical sense. Left nerve bundle gone, right side - noted heavily damaged, and left due to surgical obsctruction. Never had a day of ED since the original cath came out. Went through SRT, has had no effect on errections either (though now its mostly too painful to use that "gift". The point, there are exceptions, and they often make no sense.

In my own medical circle here locally, the concensus of opinion, is to save the HT hand for those times, when a person's primary and secondary treatments for PC have come and gone and there is nothing left but HT to slow down things. I think Dr. Walsh makes an excellent point about not starting HT early. Others will strongly disagree.

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 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 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

BB_Fan
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Date Joined Jan 2010
Total Posts : 1011
   Posted 9/18/2010 9:05 AM (GMT -6)   
Great post Zufus. I have seen the differences of opinion among medical oncologists first hand. The first med oncologist that I saw stated flatly that it didn't matter when you stated HT, it would be effective for a certain period of time and would not impact your remaining life span. He also indicated diet as it related specifically to PCa progession would not have an impact. The second med oncologist had seen some of the newer studies and suggested 2 years of HT (ADT2) with SRT could quite possibly put my PCa in remission for years. He also didn't think diet would have any impact, but through vit D would if I was deficient.
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10 .50

April 10 MRI and Bone Scan show lesion on lower spine, false positive.

Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July

psa July 10 <.01 HT at work

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 9/18/2010 9:34 AM (GMT -6)   
David- we all would like to see clearer studies, the anomolies might not be as weird (insignificant) as we might first guess(Walsh points out early the in book the disease is totally individualized scenarios)...I say most patients do not do much on alternative therapies...or hire an onco specialist on PCa soon or at the beginning of their journey which could make a significant difference. In John T's example, hiring his onco-doc after many couldn't even assess what his status was(ridiculous mistakes on and on)...might mean the difference between curative and non-curative. Or difference in prognosis durations. Wonder how many men fit this area of disease, Walsh does mention it in his book, it might have been 20% of patients (plenty enough). Not the same comparison, but gets you an idea of what happens in the real world of PCa.


BB_Fan- I would probably try to confirm those studies the 2nd onco doc mentioned (Bolla studies are similar findings most likely), keeping current in cancers is only to the patients benefit we would logically assume. Myself prefer to see open minded docs because the reality of it all...is they actually should know they don't have all the answers and don't know it all (thus an open mind-is less empty and can take in more)..and someone else is always publishing and ringing the bell with something different or new concepts and data. Maybe trust but try to verify is a good basis. I think D3 has enough evidence to be useful to cancer patients, so another plus for the 2nd onco in my little book. The first doc also gives you no hope and seems ridgid as pipe to me....and goes against what the premier onco docs contend I think that apprentice gets fired (lol). yeah

Post Edited (zufus) : 9/18/2010 9:39:26 AM (GMT-6)


F8
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Date Joined Feb 2010
Total Posts : 3800
   Posted 9/18/2010 9:40 AM (GMT -6)   

zufus -- i have a question for you.  let's take my case.  i am undergoing nine months of adjuvant hormone therapy (lupron).  let's say in three years the cancer returns and i go on lupron again.  am i nine months closer to being hormone refactory?

ed


age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 9/18/2010 10:16 AM (GMT -6)   
Zufus, thanks for posting this info.  Your postings on the effectiveness of HT make me much more comfortable with it should I have a recurrence.  I know you and BB mention the age thing at times but I belive it is one's overall health that is more important.  I'm very fortunate to be in good health at 74 and could easily live into my 90's according to my PCP.  I'm a gleason 8 and won't hesitate to start HT and SRT should I have a recurrence.   The only stumbling block might be my uro/onc.  I don't know where he stands on these issues but will ask on the next visit.  I believe I may be more at risk from falling off the treadmill at the gym while watching the cute young things. 
 
Carlos

Diagnosed 2/2008 at age 71, PSA 9.1, Gleason score 5+3, stage T1c.
Robotic surgery 5/2008, LFPF at 6 wks.,nerves spared, stg. pT2c, N0, MX, R0, Gleason 5+3
PSA <0.1 at 26 months and at all tests since surgery.

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 9/18/2010 10:26 AM (GMT -6)   
F-8  Wow...I don't even think some docs would attempt to answer that and be held to even their own opinion(s). As John T has mentioned the ratio of ADPCa cells vs. the AIPCa (hrpca) cells is the whole issue and key as to long or longer term controll and especially when using LHRH and flutamides. They don't work much on AIPCa (hrpca), but some other drugs do work against those...how long??...how big is the population?...do the PCa stem cells survive even if the older PCa cells all get killed? (my onco doc thinks this is the deal, the stem cells of PCa survive..they have not figured out how to get them into apoptosis) that is conjecture but doesn't seem to be dumb theory either. Refraction happens, it varies in how soon, how aggressive and maybe controllable or uncontrollable with drugs. Simply- no easy button answers. The disease is somewhat individualized, mentioned by Dr. Walsh too.

The recent findings from John Hopkins on longer term LHRH, maybe helping to induce or prod along hrpca seems to be exactly what is going on and perhaps long term useage of it should change/cease at some point, not to mention the various side effects, especially bone issues are very real, fracture and compression actually do occur in patients (horrible to think about). I think wise enough onco-doc and soon to follow uro-docs will look this over and try switching protocols and look at alternatives...or if not the patient has that choice to do so.

F8
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Date Joined Feb 2010
Total Posts : 3800
   Posted 9/18/2010 10:27 AM (GMT -6)   
>I believe I may be more at risk from falling off the treadmill at the gym while watching the cute young things.<
 
trust me, if you opt for lupron that no longer will be an issue cool .
 
ed
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Sancarlos
Regular Member


Date Joined Feb 2010
Total Posts : 242
   Posted 9/18/2010 10:48 AM (GMT -6)   
BB_Fan said...
Great post Zufus. I have seen the differences of opinion among medical oncologists first hand.


There is a difference of opinion about virtually every issue, be it in the humanities, the sciences or medicine. However, we should remember that all opinons are not equally informed so what one needs to do is look carefully at the training and experience of the surgeon, medical oncologist or radiation oncologist making the recommendation. Also, find out if the person has any current publications in the field, which would suggest knowledge of the current literature on the subject.

There are exceptions to every rule and I don't doubt but that there are some very smart doctors working in small cities throughout the country, but in the end there is a reason some doctors make it to the important centers like the Sloan Kettering, the Cleveland Clinic, etc. and that reason is usually due to the fact that these are doctors who are among the best in their area of expertiise.

Ultimately we all have to make our own decision about treatment, and accept the consequences. But hopefully that decision will be as informed as we can make it from our research of the best literature and consultation with the best experts.


San Carlos
Age 66, PC diagnosed 7/2009 at age 65
Stage: T2c, Gleason: 9 (4 + 5), 6 of 6 cores positive
Bone, CAT and MIR scans negative

Treatment: brachytherapy (103 palladium), 100 gy, 11/2010 + hormone therapy (Lupron + Casodex) + IMRT on Novalis, 45 gy, 3/2010.

PSA: 7/2009, At time of diagnosis -- 11.9
10/2009 -- 5.0
12/2009 -- 0.56
5/2010 -- 0.15
8/9/2010 -- 0.06

Post Edited (Sancarlos) : 9/18/2010 11:22:10 AM (GMT-6)


John T
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Date Joined Nov 2008
Total Posts : 4226
   Posted 9/18/2010 10:59 AM (GMT -6)   
I directly asked Dr Scholz if it was true that HT made androgen independent PC grow faster because they had more fuel as the dependent cells died off. He said this was absolutely false. The independent cells have their own growth rate and it may seem that they are growing faster because all the slower grow cells have died off and all that remains is the faster growing cells. It's a simple matter of math. A mixture of slow and fast growing cells will appear to grow more slowly than tumor compose just of fast growing cells. When the dependent cells are killed, the tumor will appear to accellerate.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Fairwind
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Date Joined Jul 2010
Total Posts : 3743
   Posted 9/18/2010 10:59 AM (GMT -6)   
"I would love to see a non-biased set of stats, that showed the basic info on just the 28,000 or so men that died directly from PC in the US alone last year. I would like to see when they were dx, their starting PSA - Gleason - Staging, and I would like to see what basic treatment choices they took along the way. And of course, their age at dx, and their age at death. I think they would take some of the speculation out of the subject, and some of the "don't worry - you can still live a long life" steam out of the sails."
<Purgatory>

YES!! But nobody is going to do a study like that!! Who would benefit?? There is no payday for anyone when the subjects are all dead! I would suspect, this is just a hunch, that the vast majority of the 28,000 were G-8 and higher...The surgeons and radiation oncologists would certainly not be interested. The results of such a study could mean a significant loss of business for them..

Perhaps a better study would be tracking just G-8,9,10 patients from beginning to end. What percentage are cured by primary treatment and if not cured, how do they fare (survival time) on HT?

goodlife
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Date Joined May 2009
Total Posts : 2691
   Posted 9/18/2010 1:37 PM (GMT -6)   
Fairwind,

"I would suspect, this is just a hunch, that the vast majority of the 28,000 were G-8 and higher...The surgeons and radiation oncologists would certainly not be interested. The results of such a study could mean a significant loss of business for them.."

As a high gleason patient, I find your comment most interesting. What the heck does that mean ?
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/18/2010 4:14 PM (GMT -6)   
zufus,
I certainly love your posts and believe that you have great incite on advanced disease. I also recognize that you have also mentored my quite a bit. But I have to ask a question?

What worked for Dr. Lee likely won't work as well for so many. He one case that defies the odds in prostate cancer. Was it his incite? was it his excellent knowledge of the disease or was it just plain luck? We will never know. It could very well have been a freak event that he has done so well for so long.

Now my question...What can you tell someone who follows your advice but it just doesn't work?

My friend that I told you recently about that my oncologist prescribed DES too has failed that treatment and miserably. It shows us that this disease cannot be treated because of what we have seen work in others. my friend is a great guy and it really pains me to see his options dwindling.

I should know better than to be negative but this disease can make all of our knowledge look inadequate...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7204
   Posted 9/18/2010 7:55 PM (GMT -6)   
TC:
 
You make some very good points. It is very nice to point to the exception rather than the rule. Heck, there is always the person who had a spontaneous remission from some kind of cancer. It would be nice if we could learn something from such situations, but I would be very cautious about basing my treatment on the one rare exception.
 
"Mainstream medicine" is not a dirty word.
 
"alternative medicine" is not a panacea.
 
Unfortunately, there is still so much we don't know.
 
Mel

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 9/19/2010 6:30 AM (GMT -6)   
Thanks for making me the answer man...which even maybe a few docs (oncos at that) might have those special answers for. The other thing unless you try a protocol, how do you know it is uneffective...many don't get various chances for alot of reasons. Tony did your friend try Leukine, Thalidomide combos or other less known protocols, maybe he has no hope, who knows. 

My examples are what you might have overlooked for being optimistic with a death sentence
it is called: HOPE If you don't believe their is any hope or any chance, that surely cannot help your fight or enhance your prognosis. Having seen some examples might just be the spark that could even save or help even your life Tony or anybody herein. Sure, ridiculous odds maybe, how much does anybody wish to visit the grim reaper. You say be optimistic this is how some of us get some optimistic doseages. Maybe you will understand it clearer when you know your real odds.

In sciences and medicine if nobody has the answers, do we all give up and pack it in? Or do we look to the breakthrough types, pioneers, inventors...those optimistic types or do you prefer the wisdom of like Dr. C whom you know I am referring to. We have choices, you surely don't want to steal Hope and Optimistic thoughts and chances do you?  Save that for the reaper.

Apparently there are plenty of people herein that have arrows to throw and others that are alot kinder I see some piling on starting to come, great for support. So guess I will take a vacation from here which I was thinking about anyway. Tony no real offense but your thing about "I beat up this disease and took its lunch money"....way wrong to post for being a leader of UsToo and moderator, surprized you didn't retract that long ago...I would change that for the sake of others, they may be sensitive to that as being over the top and bragadious.  Not to mention you may be forced to change that message at some point. Now you can ban me if that was to harsh to hear. 
 
Peace otherwise

Post Edited (zufus) : 9/19/2010 6:50:53 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 9/19/2010 9:14 AM (GMT -6)   
zufus, don't leave on account of arrows. if i did that, i would have been gone a year ago or more for good.

you still bring a lot of good thinking to the table, and you have forced others here to think beyond the standard treatment boxes, and who knows, for a few brothers that are in hopeless situations on paper, you may have brought hope back to their minds and hearts.

i refuse to use the "ignore" button, not because i am a glutton for punishment, it goes against every thing i believe about censorship and having a strong view on our American first ammendment rights.

there are a handful of smart as##es, wanna be doctor's, know-it-all types, and a few egomaniacs in the mix, but the bulk rank and file folks here are good people, with honest fears, and honest questions. And there are lots of regulars, that do want to help other people.

you are the one that coined the phrase that "knoweldge is power" and how the PC world "is a jungle".

You have a distinct purpose for being here, hope you see through to stay and help.

David in SC
Y
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 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

BB_Fan
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Date Joined Jan 2010
Total Posts : 1011
   Posted 9/19/2010 9:41 AM (GMT -6)   
Zufus, It would be a real loss if you were to leave the forum. Please take a break if you need one, but return. Your knowledge will be missed. BB

compiler
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Date Joined Nov 2009
Total Posts : 7204
   Posted 9/19/2010 11:02 AM (GMT -6)   
Actually, Zufus, I would hope you would stay. One of the strengths of this board is the wide variety of opinions. But, when you have such a variety, you will also have disagreements.
 
That being said, taking a break from this BB for a few days could be therapeutic. I have been thinking about doing that also, but I seem to be drawn to our family here. I can't resist.
 
David -- you said "there are a handful of smart as##es, wanna be doctor's, know-it-all types, and a few egomaniacs in the mix, but the bulk rank and file folks here are good people, with honest fears, and honest questions. And there are lots of regulars, that do want to help other people.."
 
I called you on this before and you suggested that I stay out of the fray. You also stated you don't like censorship. Well, neither do I. Consequently, let me just enter my disagreement. I think EVERY ONE of the regulars here contributes a lot. Some are more knowledgeable than others, some have particular axes to grind based on their experiences, but ALL contribute. We all bring something to the table. 
 
So, I really wish you would stop putting labels on folks. If you have problems with a poster, maybe sometimes it's best to ignore the person, at least for awhile. But, that's up to you.  I personally am here for support and to gain knowledge and learn from others. We all have good and bad posting days. Let's just accept that and give a little slack.
 
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. First post-op PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. Next PSA late Sept.

John T
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Date Joined Nov 2008
Total Posts : 4226
   Posted 9/19/2010 11:22 AM (GMT -6)   
about 2% were Gleason 6 so that leaves the rest of the higher grades that account for all the fatalities.
Zufus, We all at times feel like you do and are ready to throw in the towel on this forum.
You will never be able to change 100% of peoples minds, even the greatest minds in the country, the Supreme Court Justices, are often split 5-4 on most decisions. If you can save just one life or help one person you have performed a service. You are the most knowledgable person on this forum on alternative HT treatments and it would be a great loss to lose that knowledge.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3743
   Posted 9/19/2010 12:17 PM (GMT -6)   
Zufus, hang in there brother, we NEED you!! You see the stuff many of us are blind to, a guiding light in a dark room....
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/19/2010 1:13 PM (GMT -6)   
Zufus.
I apologize because you totally took my post the wrong way. Iwas sincere in complimenting your knowledge... and i am frustrated that it seems that no amount of knowledge is enough.

I didn't think you would be upset by my post but i clearly did upset you and i apologize for it

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 9/20/2010 5:55 AM (GMT -6)   
Very decent of you all thank you, I am not without faults or unculpable and realize that, nobody bats a thousand. Tony thanks for an apology, and mine goes out to you, no long term collateral damages I trust and let's move forward, and Mel thanks for some support too.

Appreciate hearing from John T, Fairwind, David, BB_Fan, etc.

I am just starting a drug resumption from vaction idea, went off drug(s) for 6 weeks psa did rise faster than ever before, I expect a decent decline soon and resuming DES 1-mg and already added casodex for kicks for 4 days and then off casodex it might not be helpful at all(have tried this before in the past for short time). I get psa tests $15 walkin basis, so can test anytime I wish and thus can monitor psa's closer for what that might be worth.

Post Edited (zufus) : 9/21/2010 9:20:05 AM (GMT-6)

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