Re: Running out of ideas

[Guest guest]

Hi Allan,

Did the surgeon know that you had a Gleason Score of 8?

Did he urge you to have surgery? If so I think he is guilty

of malpractice. There are some who say that operating on

a high Gleason to debulk the tumor is helpful. But I believe

that it only adds to one's problems. Just my opinion- and

the fact that I have read about so many men who have

not seemed to have benefitted from debulking.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

I had prostate surgery with perfect post surgery pathology reports. My gleason was 8. The surgery failed since my psa started rapidly rising 9 months later and reached 10 another 11 months after that.I took lupron (combined with casodex)and quickly dropped my PSA to zero but it failed after about 18 months and it started going up again with a rapid doubling time of 2 months. I switched the casodex to Ketoconozol which worked well but had to quit after 2 months because of liver toxicity. Switched the Ketoconozol to Megace and it slowed it down a lot, but it is slowly running its course after 12 months and PSA is rising faster and faster over the months. I have all negative scans MRI, CT, Prostasynct, PET, and xrays. My PSA is above 2 and rising. My oncologist is out of ideas and is waiting for me to get a lot worse before considering chemo options.One opinion said to let the megace run longer. One person in a support group said I might get a short response from casodex since I have been off it for almost 3 years. I read that I can lower my dose of megace and add some DES and get a response from that.I am trying low fat and no beef diets. Did a health overhaul to lower choleterol, lose weight, workout, and fix other problems. I just turned 55 years old and have a 14 year old son who needs me to keep him out of trouble. I am still healthy enough to travel, ski, and enjoy things such as dirt bike touring in latin america. I would like to see a longer life than what they have been telling me, but new meds such as immune therapy treatments will not get to the market fast enough for me to use them. The clinical trials of new meds want me to have positive scans with tumors which I dont have yet. I am running out of ideas. Can the group respond please? Allan Brandt.

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

You might look for clinical trials, especially those that are testing the experimental prostate cancer vaccine.

Louis. . .

Running out of ideas

I had prostate surgery with perfect post surgery pathology reports. My gleason was 8. The surgery failed since my psa started rapidly rising 9 months later and reached 10 another 11 months after that.I took lupron (combined with casodex)and quickly dropped my PSA to zero but it failed after about 18 months and it started going up again with a rapid doubling time of 2 months. I switched the casodex to Ketoconozol which worked well but had to quit after 2 months because of liver toxicity. Switched the Ketoconozol to Megace and it slowed it down a lot, but it is slowly running its course after 12 months and PSA is rising faster and faster over the months. I have all negative scans MRI, CT, Prostasynct, PET, and xrays. My PSA is above 2 and rising. My oncologist is out of ideas and is waiting for me to get a lot worse before considering chemo options.One opinion said to let the megace run longer.

One person in a support group said I might get a short response from casodex since I have been off it for almost 3 years. I read that I can lower my dose of megace and add some DES and get a response from that.I am trying low fat and no beef diets. Did a health overhaul to lower choleterol, lose weight, workout, and fix other problems. I just turned 55 years old and have a 14 year old son who needs me to keep him out of trouble. I am still healthy enough to travel, ski, and enjoy things such as dirt bike touring in latin america. I would like to see a longer life than what they have been telling me, but new meds such as immune therapy treatments will not get to the market fast enough for me to use them. The clinical trials of new meds want me to have positive scans with tumors which I dont have yet. I am running out of ideas. Can the group respond please? Allan

Brandt.

[Guest guest]

I had thought, perhaps mistakenly, that the standard protocol post-prostatectomy was just to (1) give blood samples every 90 days and carefully monitor the post-prostatecomy PSA level; (2) wait and see if the prostate cancer manifested itself elsehere in the form of a tumor detectable by a CT scan, prostascint scan, MRI scan or bone scan; and (3) if so, to treat the very small tumor then with radiation treatment. Am I mistaken in this assumption? -- Tom Louis Carliner wrote: You might look for clinical trials, especially those that are testing the experimental prostate cancer vaccine. Louis. . . Running out of ideas I had prostate surgery with perfect post surgery pathology reports. My gleason was 8. The surgery failed since my psa started rapidly rising 9 months later and reached 10 another 11 months after

that.I took lupron (combined with casodex)and quickly dropped my PSA to zero but it failed after about 18 months and it started going up again with a rapid doubling time of 2 months. I switched the casodex to Ketoconozol which worked well but had to quit after 2 months because of liver toxicity. Switched the Ketoconozol to Megace and it slowed it down a lot, but it is slowly running its course after 12 months and PSA is rising faster and faster over the months. I have all negative scans MRI, CT, Prostasynct, PET, and xrays. My PSA is above 2 and rising. My oncologist is out of ideas and is waiting for me to get a lot worse before considering chemo options.One opinion said to let the megace run longer. One person in a support group said I might get a short response from casodex since I have been off it for almost 3 years. I read that I can lower my dose of megace and add some DES and get a response from

that.I am trying low fat and no beef diets. Did a health overhaul to lower choleterol, lose weight, workout, and fix other problems. I just turned 55 years old and have a 14 year old son who needs me to keep him out of trouble. I am still healthy enough to travel, ski, and enjoy things such as dirt bike touring in latin america. I would like to see a longer life than what they have been telling me, but new meds such as immune therapy treatments will not get to the market fast enough for me to use them. The clinical trials of new meds want me to have positive scans with tumors which I dont have yet. I am running out of ideas. Can the group respond please? Allan Brandt.

[Guest guest]

Was any bone scan or pelvic CAT scans done prior to the surgery as part of staging? Considering that the Gleason score was 8, this, hopefully was done prior to surgery. These two staging exams were done prior to any treatment decisions were made. In my case, the Gleason score was 6,and staging was still T1C. PSA, 14 months since surgery has remained undetectable.

Obviously, any small tumors need to be detected and treated with radiation. It is my understanding that ADT is not a cure, and can have a limited timespan for effectiveness. The prostate cancer vaccine shows much promise, and you need to get into a clinical trial program to gain access to it. Chemo is still an option.

Louis. . .

[ProstateCancerSupp ort] Running out of ideas

I had prostate surgery with perfect post surgery pathology reports. My gleason was 8. The surgery failed since my psa started rapidly rising 9 months later and reached 10 another 11 months after that.I took lupron (combined with casodex)and quickly dropped my PSA to zero but it failed after about 18 months and it started going up again with a rapid doubling time of 2 months. I switched the casodex to Ketoconozol which worked well but had to quit after 2 months because of liver toxicity. Switched the Ketoconozol to Megace and it slowed it down a lot, but it is slowly running its course after 12 months and PSA is rising faster and faster over the months. I have all negative scans MRI, CT, Prostasynct, PET, and xrays. My PSA is above 2 and rising. My oncologist is out of ideas and is waiting for me to get a lot worse before considering chemo options.One opinion said to let the megace run

longer. One person in a support group said I might get a short response from casodex since I have been off it for almost 3 years. I read that I can lower my dose of megace and add some DES and get a response from that.I am trying low fat and no beef diets. Did a health overhaul to lower choleterol, lose weight, workout, and fix other problems. I just turned 55 years old and have a 14 year old son who needs me to keep him out of trouble. I am still healthy enough to travel, ski, and enjoy things such as dirt bike touring in latin america. I would like to see a longer life than what they have been telling me, but new meds such as immune therapy treatments will not get to the market fast enough for me to use them. The clinical trials of new meds want me to have positive scans with tumors which I dont have yet. I am running out of ideas. Can the group respond please? Allan

Brandt.

[Guest guest]

My diagnosis bioposy had one sample one side with a gleason 8. Other

samples were negative. If I could turn back the clock I would have

things differently. I would have done seeds + immediate lupron for a

short time, followed by salvage external beam radiation. I would have

tried to go for a cure. At that time, I did not have the knowledge or

group inputs like this yahoo group. My doctor said surgery had the

best chance so I did it.

>

>

>

> Hi Allan,

>

> Did the surgeon know that you had a Gleason Score of 8?

> Did he urge you to have surgery? If so I think he is guilty

> of malpractice. There are some who say that operating on

> a high Gleason to debulk the tumor is helpful. But I believe

> that it only adds to one's problems. Just my opinion- and

> the fact that I have read about so many men who have

> not seemed to have benefitted from debulking.

>

>

>

> I wish you all the best

>

> Aubrey Pilgrim, DC (Ret.) Author of

> A Revolutionary Approach to Prostate Cancer-Read the original book

> for FREE at:

_http://www.prostatepointers.org/prostate/lay/apilgrim/_

> (http://www.prostatepointers.org/prostate/lay/apilgrim/)

> Read new edition for FREE at

> _http://www.cancer.prostate-help.org/capilgr.htm_

(http://www.cancer.prostate-help.org/capilgr.htm)

> Dr. E. Crawford is co-author of the revision

>

>

> In a message dated 11/24/2007 11:48:50 P.M. Pacific Standard Time,

> Allan@... writes:

>

>

>

>

> I had prostate surgery with perfect post surgery pathology reports.

> My gleason was 8. The surgery failed since my psa started rapidly

> rising 9 months later and reached 10 another 11 months after that.

>

> I took lupron (combined with casodex)and quickly dropped my PSA to

> zero but it failed after about 18 months and it started going up

> again with a rapid doubling time of 2 months. I switched the

casodex

> to Ketoconozol which worked well but had to quit after 2 months

> because of liver toxicity. Switched the Ketoconozol to Megace and

it

> slowed it down a lot, but it is slowly running its course after 12

> months and PSA is rising faster and faster over the months. I have

> all negative scans MRI, CT, Prostasynct, PET, and xrays. My PSA is

> above 2 and rising. My oncologist is out of ideas and is waiting

for

> me to get a lot worse before considering chemo options.

>

> One opinion said to let the megace run longer. One person in a

> support group said I might get a short response from casodex since

I

> have been off it for almost 3 years. I read that I can lower my

dose

> of megace and add some DES and get a response from that.

>

> I am trying low fat and no beef diets. Did a health overhaul to

lower

> choleterol, lose weight, workout, and fix other problems. I just

> turned 55 years old and have a 14 year old son who needs me to

keep

> him out of trouble. I am still healthy enough to travel, ski, and

> enjoy things such as dirt bike touring in latin america. I would

like

> to see a longer life than what they have been telling me, but new

> meds such as immune therapy treatments will not get to the market

> fast enough for me to use them. The clinical trials of new meds

want

> me to have positive scans with tumors which I dont have yet. I am

> running out of ideas. Can the group respond please? Allan Brandt.

>

>

>

>

>

>

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

[Guest guest]

I am pleased to note that you have the where-with-all to travel and

enjoy life. That being the base, you should certainly avail yourself

of one of the tope Medical Oncologists in the nation with expertise

in treating advanced prostate cancer. Here are a few of such

specialists for you to consider. I would suggest early contact with

your choice, and get busy being under the care of any one of

these " best among the rest. "

B. Strum, Ashland, Oregon (Does not accept insurance.

Contact Miwha Strum at miwha@... or call her at

to arrange consultation Fee for consultation services)

E. " Snuffy " Myers, Earlyville, Virginia www.prostateforum.com

(Does not accept insurance. Fee for consultation services)

Mark Scholz and Lam, Marina del Ray, California

http://www.prostateoncology.com

Bob Leibowitz, Los Angeles, California www.compassionateoncology.org

(Requires initial $1500.00 fee, then your insurance coverage)

(Chuck) Maack

Prostate Cancer Advocate

>

> I had prostate surgery with perfect post surgery pathology reports.

> My gleason was 8. The surgery failed since my psa started rapidly

> rising 9 months later and reached 10 another 11 months after that.

>

> I took lupron (combined with casodex)and quickly dropped my PSA to

> zero but it failed after about 18 months and it started going up

> again with a rapid doubling time of 2 months. I switched the

casodex

> to Ketoconozol which worked well but had to quit after 2 months

> because of liver toxicity. Switched the Ketoconozol to Megace and

it

> slowed it down a lot, but it is slowly running its course after 12

> months and PSA is rising faster and faster over the months. I have

> all negative scans MRI, CT, Prostasynct, PET, and xrays. My PSA is

> above 2 and rising. My oncologist is out of ideas and is waiting

for

> me to get a lot worse before considering chemo options.

>

> One opinion said to let the megace run longer. One person in a

> support group said I might get a short response from casodex since

I

> have been off it for almost 3 years. I read that I can lower my

dose

> of megace and add some DES and get a response from that.

>

> I am trying low fat and no beef diets. Did a health overhaul to

lower

> choleterol, lose weight, workout, and fix other problems. I just

> turned 55 years old and have a 14 year old son who needs me to keep

> him out of trouble. I am still healthy enough to travel, ski, and

> enjoy things such as dirt bike touring in latin america. I would

like

> to see a longer life than what they have been telling me, but new

> meds such as immune therapy treatments will not get to the market

> fast enough for me to use them. The clinical trials of new meds

want

> me to have positive scans with tumors which I dont have yet. I am

> running out of ideas. Can the group respond please? Allan Brandt.

>

[Guest guest]

Allan,

I am very sorry to hear about your condition.

DES has been used successfully as a second line hormone therapy

and seems to me to be worth trying. It may be good for a few

months, or even for a year or more. A friend of mine got

somewhere around nine months from it, if I remember correctly.

There are some supplements that have helped some people. I don't

put much faith in them but, as far as I know, they aren't

dangerous and it can't hurt to try them.

A friend of mine with advanced, metastatic cancer was put on

large doses of vitamin C and of pomegranate extract. His PSA has

stabilized at around 10-11 for the last two months, which is

something. Of course there's no way to know if the supplements

are responsible.

I don't know what dose of vitamin C he's taking. I do know he's

taking five capsules a day of pomegranate that he buys from

Life Extension (http://www.lef.org/newshop/items/item00956.html)

I have no reason to suppose that there's anything special about

that company, but you might find it useful to calculate dosages

by multiplying the dose in their capsules by 5 and comparing it

to other brands.

As for clinical trials, you may want to do more searching. I

don't know what you've done so far, but in case you don't know

about them, I'll refer you to two websites:

http://clinicaltrials.gov

and

http://www.cancer.gov/clinicaltrials/search/

Both sites have pretty much the same set of trials, but they are

searchable in different ways. I'm most familiar with the second

one, which is run by the National Cancer Institute where I work

as a computer programmer. On that one, select:

Type of cancer = " Prostate Cancer "

Stage, etc. = " recurrent prostate cancer "

Type of trial = " Treatment "

You can also narrow by distance from your zip code, but you might

not want to do that yet.

As of tonight, there are 195 hits on the above search. Most of

those are irrelevant to you, but there are quite a few that are

relevant.

In addition to those trials, you can also search for

Type of Cancer = " Solid tumor, unspecified adult "

Those are trials of treatments that might apply to all solid

tumors, including prostate cancer, which falls in that group.

Searching there gets another 415 hits.

It takes hours of work to wade through all of this, but it might

be worthwhile, especially if a relative or friend can help.

Unfortunately, clinical trials of experimental treatments are

unlikely to save you. The treatments are, after all,

experimental and the great majority of experiments fail. But

they may help and may be worth trying.

The cancer.gov website has a fair amount of information about how

clinical trials are run, how to get information about them, what

to expect, etc.

I entered a clinical trial of a modified radiation technique and

it worked out for me, though my cancer was not quite as

aggressive as yours (Gleason 4+3). The overall experience was

very positive. The doctors I met were more knowledgeable than

most, the quality of care and follow up were quite good, and the

cost was zero since it was all paid for by research grant funds.

I also had some feeling that I might be helping to develop

treatments that would be useful to others, including my own son

when he reaches my age.

Best of luck to you and to your family.

Alan Meyer

ameyer2@...

________________________________________________________________________________\

____

Be a better pen pal.

Text or chat with friends inside Yahoo! Mail. See how.

http://overview.mail.yahoo.com/

[Guest guest]

> ...

> Did the surgeon know that you had a Gleason Score of 8?

> Did he urge you to have surgery? If so I think he is guilty

> of malpractice. There are some who say that operating on

> a high Gleason to debulk the tumor is helpful. But I believe

> that it only adds to one's problems. Just my opinion- and

> the fact that I have read about so many men who have

> not seemed to have benefitted from debulking.

> ...

I don't believe that's true Aubrey. Gleason 8 tumors

are indeed high risk. Treatment failures are common.

But surgeries are also often successful. I don't know

the success rates and different studies find different

rates. How good the odds are depends on pretreatment

PSA, age, and clinical stage as well as Gleason score,

but I seem to recall seeing numbers ranging from 20%

up to 70+%, depending on those other factors.

Those aren't fabulous odds, but they're better than

the odds one has without primary treatment.

If I were a patient and were offered those odds, I know

I'd take my chances and hope for the best rather than

refuse primary treatment.

Alan

[Guest guest]

Hi Alan,

Dr. Judah Folkman is the man who first discovered that

cancers provide a substance, angiogenesis substances,

to cause the body to build new blood vessels to supply them.

Because of his studies, we now have several anti-angiogenesis

drugs which do show some success.

Dr. Folkman also suggested that a primary tumor may have

some control over secondary tumors. How many times have

you heard of a many who had his prostate removed, then

almost immediately his PSA may go up because of the

secondary tumor. I am sorry but I don't have any studies at

hand about this.

My point is that with a Gleason Score of 8 or more, very

often the cancer has already escaped the prostate and is

somewhere else in the body. So local therapy, such as

removal of the prostate. in many cases where there is a

high Gleason Score or PSA above 20 is not curative.

If it were me, and I had a very high PSA or Gleason, I would

opt for a regimen of Androgen Deprivation Therapy (ADT)

which would treat the cancer no matter where it is.

Again, this is my own opinion- you are responsible for your

own therapy. However, one should be well informed when

making a decision that will affect you for the rest of your life.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

In ProstateCancerSupport , APilgrm@... wrote:> ...> Did the surgeon know that you had a Gleason Score of 8?> Did he urge you to have surgery? If so I think he is guilty> of malpractice. There are some who say that operating on> a high Gleason to debulk the tumor is helpful. But I believe> that it only adds to one's problems. Just my opinion- and> the fact that I have read about so many men who have > not seemed to have benefitted from debulking.> ...I don't believe that's true Aubrey. Gleason 8 tumors are indeed high risk. Treatment failures are common. But surgeries are also often successful. I don't knowthe success rates and different studies find differentrates. How good the odds are depends on pretreatmentPSA, age, and clinical stage as well as Gleason score,but I seem to recall seeing numbers ranging from 20%up to 70+%, depending on those other factors.Those aren't fabulous odds, but they're better than the odds one has without primary treatment.If I were a patient and were offered those odds, I knowI'd take my chances and hope for the best rather than refuse primary treatment.Alan

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Thanks for the info Aubrey.

However I think I'd still opt for the surgery or radiation.

According to the National Cancer Institute, ADT works for an

average of 18 months before PSA starts to rise again. For a

patient with a particularly hormone sensitive cancer, it could

work longer since the average includes people with PSAs in the

hundreds.

But even if ADT works for 4 years, and secondary treatments work

for another 2 years, the 55 year old who wrote in would be only

61 when his PSA went out of control and he could expect only

another few years. He'd very likely be dead by 65. In the

actual event, Allan got the average 18 months before his PSA

started to rise, and he had dangerous toxicity from second line

hormone therapy (ketoconazole) that badly limited his options in

that direction. So hormone therapy didn't do a great deal more

for him than surgery did.

I looked at the Sloan-Kettering nomogram at:

http://www.mskcc.org/mskcc/html/10088.cfm

You have to click " Open calculator " and then click the check box

that accepts their terms and conditions. Then click

" Pre-treatment " and fill in some numbers. To see surgery results

you have to click the " Historical model " tab on the right side of

the screen. Depending on what else you put in, you can see 5

year progression free probabilities as high as 81% or as low as

24% for PSA=30 and stage T2B. Gleason 8 cancers

Obviously what to do is an individual choice. Choosing ADT over

attempted curative treatment is a perfectly valid choice that

meets some people's goals. It avoids the side effects of surgery

or radiation. But if I were a physician, I still would have

recommended surgery or radiation to a person presenting with

Allan's diagnosis. It didn't work, but it was his one real shot

at a long life. I don't think that recommendation should be

called " malpractice " .

Alan

Re: Re: Running out of ideas

Hi Alan,

Dr. Judah Folkman is the man who first discovered that

cancers provide a substance, angiogenesis substances,

to cause the body to build new blood vessels to supply them.

Because of his studies, we now have several anti-angiogenesis

drugs which do show some success.

Dr. Folkman also suggested that a primary tumor may have

some control over secondary tumors. How many times have

you heard of a many who had his prostate removed, then

almost immediately his PSA may go up because of the

secondary tumor. I am sorry but I don't have any studies at

hand about this.

My point is that with a Gleason Score of 8 or more, very

often the cancer has already escaped the prostate and is

somewhere else in the body. So local therapy, such as

removal of the prostate. in many cases where there is a

high Gleason Score or PSA above 20 is not curative.

If it were me, and I had a very high PSA or Gleason, I would

opt for a regimen of Androgen Deprivation Therapy (ADT)

which would treat the cancer no matter where it is.

Again, this is my own opinion- you are responsible for your

own therapy. However, one should be well informed when

making a decision that will affect you for the rest of your life.

I wish you all the best

Aubrey Pilgrim, DC (Ret.) Author of

A Revolutionary Approach to Prostate Cancer-Read the original book

for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/

Read new edition for FREE at

http://www.cancer.prostate-help.org/capilgr.htm

Dr. E. Crawford is co-author of the revision

In a message dated 11/25/2007 8:37:58 P.M. Pacific Standard Time,

ameyer2@... writes:

In ProstateCancerSuppo rtyahoogroups (DOT) com, APilgrm@... wrote:

> ...

> Did the surgeon know that you had a Gleason Score of 8?

> Did he urge you to have surgery? If so I think he is guilty

> of malpractice. There are some who say that operating on

> a high Gleason to debulk the tumor is helpful. But I believe

> that it only adds to one's problems. Just my opinion- and

> the fact that I have read about so many men who have

> not seemed to have benefitted from debulking.

> ...

I don't believe that's true Aubrey. Gleason 8 tumors

are indeed high risk. Treatment failures are common.

But surgeries are also often successful. I don't know

the success rates and different studies find different

rates. How good the odds are depends on pretreatment

PSA, age, and clinical stage as well as Gleason score,

but I seem to recall seeing numbers ranging from 20%

up to 70+%, depending on those other factors.

Those aren't fabulous odds, but they're better than

the odds one has without primary treatment.

If I were a patient and were offered those odds, I know

I'd take my chances and hope for the best rather than

refuse primary treatment.

Alan

[Guest guest]

ADT is NEVER a cure. It is a temporary palliative. It may be used as an adjunct therapy prior to radiation or brachytherapy to shrink the prostate prior to treatment. It is also a backstop in case any of the major treatment modalities fail.

Louis. . .

Re: [ProstateCancerSupp ort] Re: Running out of ideasHi Alan,Dr. Judah Folkman is the man who first discovered thatcancers provide a

substance, angiogenesis substances,to cause the body to build new blood vessels to supply them.Because of his studies, we now have several anti-angiogenesisdrugs which do show some success.Dr. Folkman also suggested that a primary tumor may havesome control over secondary tumors. How many times haveyou heard of a many who had his prostate removed, thenalmost immediately his PSA may go up because of thesecondary tumor. I am sorry but I don't have any studies athand about this.My point is that with a Gleason Score of 8 or more, veryoften the cancer has already escaped the prostate and issomewhere else in the body. So local therapy, such asremoval of the prostate. in many cases where there is ahigh Gleason Score or PSA above 20 is not curative.If it were me, and I had a very high PSA or Gleason, I wouldopt for a regimen of Androgen Deprivation Therapy (ADT)which would treat the

cancer no matter where it is.Again, this is my own opinion- you are responsible for yourown therapy. However, one should be well informed whenmaking a decision that will affect you for the rest of your life.I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original bookfor FREE at: http://www.prostate pointers. org/prostate/ lay/apilgrim/Read new edition for FREE athttp://www.cancer. prostate- help.org/ capilgr.htmDr. E. Crawford is co-author of the revisionIn a message dated 11/25/2007 8:37:58 P.M. Pacific Standard Time,ameyer2yahoo (DOT)

com writes:In ProstateCancerSuppo rtyahoogroups (DOT) com, APilgrm@... wrote:> ...> Did the surgeon know that you had a Gleason Score of 8?> Did he urge you to have surgery? If so I think he is guilty> of malpractice. There are some who say that operating on> a high Gleason to debulk the tumor is helpful. But I believe> that it only adds to one's problems. Just my opinion- and> the fact that I have read about so many men who have> not seemed to have benefitted from debulking.> ...I don't believe that's true Aubrey. Gleason 8 tumorsare indeed high risk. Treatment failures are common.But surgeries are also often successful. I don't knowthe success rates and different studies find differentrates. How good the odds are depends on pretreatmentPSA, age, and clinical stage as well as Gleason score,but I seem to recall seeing numbers ranging from 20%up to

70+%, depending on those other factors.Those aren't fabulous odds, but they're better thanthe odds one has without primary treatment.If I were a patient and were offered those odds, I knowI'd take my chances and hope for the best rather thanrefuse primary treatment.Alan

[Guest guest]

Thanks for the suggestions everybody posted. The only malpractice

here was my own fault for not researching other options such as seeds

with immediate adt to stop the spreading while seeds are working.

seeds have slightly higher success stats, but I cant turn back the

clock.

The group gave me some ideas. I have a suggetion for an oncologist in

Los Angeles, Dr. Bob Leibowitz, who seems to have a bigger bag of

tricks than my oncologist. That new onclogist is famous for

encouraging drug therapy when surgery does not have a good chance.

His goal is to try to make prostate cancer a managable nuisance

rather than a terminal illness.

I also found a clinical trial of TROVAX + taxotere that does not

require to show a tumor on a scan or have one foot in the grave

before I start the trial. TROVAX is one many immune vaccines being

tested in the US by different companies. Most companies wont take me

because of my gleason score and the fact that my scans are still

negative. Those companies want a quick survival statistic so they

want people who are closer to death. Vaccines are showing data to

extend life when used alone, such as the DENDREON trials, and be more

effective when combined with another approved and tested treatment.

It is lead by Dr. Amato at the Methodist Research Hospital in

Houston. That oncologist is one of the best in the world I heard.

> > ...

> > Did the surgeon know that you had a Gleason Score of 8?

> > Did he urge you to have surgery? If so I think he is guilty

> > of malpractice. There are some who say that operating on

> > a high Gleason to debulk the tumor is helpful. But I believe

> > that it only adds to one's problems. Just my opinion- and

> > the fact that I have read about so many men who have

> > not seemed to have benefitted from debulking.

> > ...

>

> I don't believe that's true Aubrey. Gleason 8 tumors

> are indeed high risk. Treatment failures are common.

> But surgeries are also often successful. I don't know

> the success rates and different studies find different

> rates. How good the odds are depends on pretreatment

> PSA, age, and clinical stage as well as Gleason score,

> but I seem to recall seeing numbers ranging from 20%

> up to 70+%, depending on those other factors.

>

> Those aren't fabulous odds, but they're better than

> the odds one has without primary treatment.

>

> If I were a patient and were offered those odds, I know

> I'd take my chances and hope for the best rather than

> refuse primary treatment.

>

> Alan

>

[Guest guest]

Hi Alan,

You are absolutely wrong about the limit of ADT. I personally

know many men who have been on it for several years- or

rather most of them go on it for a year, then go intermittent.

If the PSA starts to rise and the man becomes hormone

refractory, there are several other options that could be

pursued. Not everyone becomes hormone refractory.

Of course, it is your body and you are free to choose any

therapy. I do believe that you are misinformed.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

Thanks for the info Aubrey.However I think I'd still opt for the surgery or radiation.According to the National Cancer Institute, ADT works for anaverage of 18 months before PSA starts to rise again. For apatient with a particularly hormone sensitive cancer, it couldwork longer since the average includes people with PSAs in thehundreds.But even if ADT works for 4 years, and secondary treatments workfor another 2 years, the 55 year old who wrote in would be only61 when his PSA went out of control and he could expect onlyanother few years. He'd very likely be dead by 65. In theactual event, Allan got the average 18 months before his PSAstarted to rise, and he had dangerous toxicity from second linehormone therapy (ketoconazole) that badly limited his options inthat direction. So hormone therapy didn't do a great deal morefor him than surgery did.I looked at the Sloan-Kettering nomogram at:http://www.mskcc.org/mskcc/html/10088.cfmYou have to click "Open calculator" and then click the check boxthat accepts their terms and conditions. Then click"Pre-treatment" and fill in some numbers. To see surgery resultsyou have to click the "Historical model" tab on the right side ofthe screen. Depending on what else you put in, you can see 5year progression free probabilities as high as 81% or as low as24% for PSA=30 and stage T2B. Gleason 8 cancersObviously what to do is an individual choice. Choosing ADT overattempted curative treatment is a perfectly valid choice thatmeets some people's goals. It avoids the side effects of surgeryor radiation. But if I were a physician, I still would haverecommended surgery or radiation to a person presenting withAllan's diagnosis. It didn't work, but it was his one real shotat a long life. I don't think that recommendation should becalled "malpractice".Alan

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

HI Louis,

What are your qualifications? You have made several

unqualified statements recently. Do you have any studies

or information to back up your statements?

I know several men who are alive because of their ADT

treatments. Dr. Bob Leibowitz is a friend who has published

his studies about the successes he has had with his patients.

Dr. Mark Scholz is another friend who has treated hundreds

of men with ADT and has had some great successes.

Of course there is no 100 percent cure using any therapy.

But I do know many men who are still alive because of

their use of ADT.

Please if you are going to make absolute statements, Please

offer some proof.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

ADT is NEVER a cure. It is a temporary palliative. It may be used as an adjunct therapy prior to radiation or brachytherapy to shrink the prostate prior to treatment. It is also a backstop in case any of the major treatment modalities fail.

Louis. . .

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Hi WM,

Several Antiangiogenesis drugs have been developed. If

you remember the Thalidomide fiasco a few years ago,

several babies were born to mothers who had taken the

drug. It prevented the development of blood vessels so

many babies were born without arms or legs.

Dr. Bob Leibowitz now uses Thalidomide on his patients to

help prevent the cancer from growing new blood vessels.

Without the new blood vessels, a tumor cannot grow to any

large size.

There are several Antiangiogenesis drugs. I have macular

degeneration where small blood vessels are growing in the

retina of my right eye. I have periodic injections of a drug

to prevent that growth. It does seem to be working.

Prostate cancer thrives on testosterone, or a conversion of

testosterone to dihydrotestosterone (DHT). By depriving the

cancer cells of testosterone, they will shrink up and die. However

there are usually some cancer cells which learn to survive and

propagate without testosterone. These are the hormone independent

cells which may kill a person.

If a person on Androgen Deprivation Therapy (ADT) becomes

hormone refractory, then the next step is to use chemotherapy.

There are several drugs which can be used. Of course it is

better to stop the cancer before it becomes hormone refractory,

but the chemotherapy has been successful in many cases.

Hope this helps- you can read more about this in my book listed

below.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

Aubrey:

This is first time hearing of this angiogenesis. (just something we don't readily think or ask about).

With ADT in mind, would you please refer to your notes and explain what the dif. is between an androgen depletion drug vs a chemo (which I understand attacks the mets anywhere and is used post ADT regimen?)

Thanx.

WM.

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Aubrey:

This is first time hearing of this angiogenesis. (just something we don't readily think or ask about).

With ADT in mind, would you please refer to your notes and explain what the dif. is between an androgen depletion drug vs a chemo (which I understand attacks the mets anywhere and is used post ADT regimen?)

Thanx.

WM.

Re: Re: Running out of ideas

Hi Alan,

Dr. Judah Folkman is the man who first discovered that

cancers provide a substance, angiogenesis substances,

to cause the body to build new blood vessels to supply them.

Because of his studies, we now have several anti-angiogenesis

drugs which do show some success.

Dr. Folkman also suggested that a primary tumor may have

some control over secondary tumors. How many times have

you heard of a many who had his prostate removed, then

almost immediately his PSA may go up because of the

secondary tumor. I am sorry but I don't have any studies at

hand about this.

My point is that with a Gleason Score of 8 or more, very

often the cancer has already escaped the prostate and is

somewhere else in the body. So local therapy, such as

removal of the prostate. in many cases where there is a

high Gleason Score or PSA above 20 is not curative.

If it were me, and I had a very high PSA or Gleason, I would

opt for a regimen of Androgen Deprivation Therapy (ADT)

which would treat the cancer no matter where it is.

Again, this is my own opinion- you are responsible for your

own therapy. However, one should be well informed when

making a decision that will affect you for the rest of your life.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision

In a message dated 11/25/2007 8:37:58 P.M. Pacific Standard Time, ameyer2 writes:

In ProstateCancerSupport , APilgrm@... wrote:> ...> Did the surgeon know that you had a Gleason Score of 8?> Did he urge you to have surgery? If so I think he is guilty> of malpractice. There are some who say that operating on> a high Gleason to debulk the tumor is helpful. But I believe> that it only adds to one's problems. Just my opinion- and> the fact that I have read about so many men who have > not seemed to have benefitted from debulking.> ...I don't believe that's true Aubrey. Gleason 8 tumors are indeed high risk. Treatment failures are common. But surgeries are also often successful. I don't knowthe success rates and different studies find differentrates. How good the odds are depends on pretreatmentPSA, age, and clinical stage as well as Gleason score,but I seem to recall seeing numbers ranging from 20%up to 70+%, depending on those other factors.Those aren't fabulous odds, but they're better than the odds one has without primary treatment.If I were a patient and were offered those odds, I knowI'd take my chances and hope for the best rather than refuse primary treatment.Alan

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Sticking my nose in, and possibly friend Aubrey will have a different

definition, but because of the fine line of difference, many would

include ADT in the Chemotherapy category.

The basic distinguishing difference is that ADT is intended to reduce

levels of the male hormones/androgens testosterone and

dihydrotestosterone (DHT) in order to shrink tumors as well as

inhibit their growth, whereas chemotherapy uses toxic drugs to slow

or reverse the spread of cancer. The drugs are injected into the

bloodstream to poison rapidly growing cancer cells. Unforunately,

side effects include damage to healthy cells and organs.

> > ...

> > Did the surgeon know that you had a Gleason Score of 8?

> > Did he urge you to have surgery? If so I think he is guilty

> > of malpractice. There are some who say that operating on

> > a high Gleason to debulk the tumor is helpful. But I believe

> > that it only adds to one's problems. Just my opinion- and

> > the fact that I have read about so many men who have

> > not seemed to have benefitted from debulking.

> > ...

>

> I don't believe that's true Aubrey. Gleason 8 tumors

> are indeed high risk. Treatment failures are common.

> But surgeries are also often successful. I don't know

> the success rates and different studies find different

> rates. How good the odds are depends on pretreatment

> PSA, age, and clinical stage as well as Gleason score,

> but I seem to recall seeing numbers ranging from 20%

> up to 70+%, depending on those other factors.

>

> Those aren't fabulous odds, but they're better than

> the odds one has without primary treatment.

>

> If I were a patient and were offered those odds, I know

> I'd take my chances and hope for the best rather than

> refuse primary treatment.

>

> Alan

>

>

>

>

>

>

> --------------------------------------------------------------------

----------

> Check out AOL Money Finance's list of the hottest products and

top money wasters of 2007.

>

[Guest guest]

Chalk me up for 15 years since diagnosis, failed RP followed by EBRT,

and subsequent 11 years (so far) adt/iadt/adt/iadt and still

going....going.....going.....and, as Aubrey notes, there are many

more of us.

>

>

>

> Hi Alan,

>

> You are absolutely wrong about the limit of ADT. I personally

> know many men who have been on it for several years- or

> rather most of them go on it for a year, then go intermittent.

>

> If the PSA starts to rise and the man becomes hormone

> refractory, there are several other options that could be

> pursued. Not everyone becomes hormone refractory.

>

> Of course, it is your body and you are free to choose any

> therapy. I do believe that you are misinformed.

>

>

>

> I wish you all the best

>

> Aubrey Pilgrim, DC (Ret.) Author of

> A Revolutionary Approach to Prostate Cancer-Read the original book

> for FREE at:

_http://www.prostatepointers.org/prostate/lay/apilgrim/_

> (http://www.prostatepointers.org/prostate/lay/apilgrim/)

> Read new edition for FREE at

> _http://www.cancer.prostate-help.org/capilgr.htm_

(http://www.cancer.prostate-help.org/capilgr.htm)

> Dr. E. Crawford is co-author of the revision

>

>

> In a message dated 11/26/2007 10:57:52 A.M. Pacific Standard Time,

> ameyer2@... writes:

>

>

>

>

>

> Thanks for the info Aubrey.

>

> However I think I'd still opt for the surgery or radiation.

> According to the National Cancer Institute, ADT works for an

> average of 18 months before PSA starts to rise again. For a

> patient with a particularly hormone sensitive cancer, it could

> work longer since the average includes people with PSAs in the

> hundreds.

>

> But even if ADT works for 4 years, and secondary treatments work

> for another 2 years, the 55 year old who wrote in would be only

> 61 when his PSA went out of control and he could expect only

> another few years. He'd very likely be dead by 65. In the

> actual event, Allan got the average 18 months before his PSA

> started to rise, and he had dangerous toxicity from second line

> hormone therapy (ketoconazole) that badly limited his options in

> that direction. So hormone therapy didn't do a great deal more

> for him than surgery did.

>

> I looked at the Sloan-Kettering nomogram at:

>

> _http://www.mskcc.http://wwwhttp://www.htt_

> (http://www.mskcc.org/mskcc/html/10088.cfm)

>

> You have to click " Open calculator " and then click the check box

> that accepts their terms and conditions. Then click

> " Pre-treatment " and fill in some numbers. To see surgery results

> you have to click the " Historical model " tab on the right side of

> the screen. Depending on what else you put in, you can see 5

> year progression free probabilities as high as 81% or as low as

> 24% for PSA=30 and stage T2B. Gleason 8 cancers

>

> Obviously what to do is an individual choice. Choosing ADT over

> attempted curative treatment is a perfectly valid choice that

> meets some people's goals. It avoids the side effects of surgery

> or radiation. But if I were a physician, I still would have

> recommended surgery or radiation to a person presenting with

> Allan's diagnosis. It didn't work, but it was his one real shot

> at a long life. I don't think that recommendation should be

> called " malpractice " c

>

> Alan

>

>

>

>

>

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

[Guest guest]

None, really. All of the information is based on what I read or heard. Sorry if I am being misconstrued as a medical professional!

Louis. . .

Re: Re: Running out of ideas

HI Louis,

What are your qualifications? You have made several

unqualified statements recently. Do you have any studies

or information to back up your statements?

I know several men who are alive because of their ADT

treatments. Dr. Bob Leibowitz is a friend who has published

his studies about the successes he has had with his patients.

Dr. Mark Scholz is another friend who has treated hundreds

of men with ADT and has had some great successes.

Of course there is no 100 percent cure using any therapy.

But I do know many men who are still alive because of

their use of ADT.

Please if you are going to make absolute statements, Please

offer some proof.

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostate pointers. org/prostate/ lay/apilgrim/Read new edition for FREE at http://www.cancer. prostate- help.org/ capilgr.htmDr. E. Crawford is co-author of the revision

In a message dated 11/26/2007 1:58:25 P.M. Pacific Standard Time, lcarlineryahoo (DOT) com writes:

ADT is NEVER a cure. It is a temporary palliative. It may be used as an adjunct therapy prior to radiation or brachytherapy to shrink the prostate prior to treatment. It is also a backstop in case any of the major treatment modalities fail.

Louis. . .

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

I noticed that Mark Scholz at prostateoncology.com is not taking new

patients. Who do you recommend who can provide inovative options for

androgen independent patients? You seem to have good MD friends and I

am desperate for ideas.

>

>

>

> HI Louis,

>

> What are your qualifications? You have made several

> unqualified statements recently. Do you have any studies

> or information to back up your statements?

>

> I know several men who are alive because of their ADT

> treatments. Dr. Bob Leibowitz is a friend who has published

> his studies about the successes he has had with his patients.

> Dr. Mark Scholz is another friend who has treated hundreds

> of men with ADT and has had some great successes.

>

> Of course there is no 100 percent cure using any therapy.

> But I do know many men who are still alive because of

> their use of ADT.

>

> Please if you are going to make absolute statements, Please

> offer some proof.

>

>

> I wish you all the best

>

> Aubrey Pilgrim, DC (Ret.) Author of

> A Revolutionary Approach to Prostate Cancer-Read the original book

> for FREE at:

_http://www.prostatepointers.org/prostate/lay/apilgrim/_

> (http://www.prostatepointers.org/prostate/lay/apilgrim/)

> Read new edition for FREE at

> _http://www.cancer.prostate-help.org/capilgr.htm_

(http://www.cancer.prostate-help.org/capilgr.htm)

> Dr. E. Crawford is co-author of the revision

>

>

> In a message dated 11/26/2007 1:58:25 P.M. Pacific Standard Time,

> lcarliner@... writes:

>

> ADT is NEVER a cure. It is a temporary palliative. It may be used

as an

> adjunct therapy prior to radiation or brachytherapy to shrink the

prostate prior

> to treatment. It is also a backstop in case any of the major

treatment

> modalities fail.

>

> Louis. . .

>

>

>

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

[Guest guest]

> ... Most companies wont take me

> because of my gleason score and the fact that my scans are still

> negative. Those companies want a quick survival statistic so they

> want people who are closer to death. ...

Many causes of this may be less sinister than you might think.

One surprising result of a recent study of clinical trials

was that many doctors were referring patients to trials

who didn't even have the condition that the experimental

treatment was being tested for. In one case, 1/3 of the

patients turned out not to have the condition. The doctors

had been sloppy about diagnosing their own patients.

Since then, trials designers have been more careful about

insisting on documentary proof (e.g., bone scans) that the

patient actually has the problem that the experimental

treatment is trying to solve (e.g., metastatic cancer).

Alan

[Guest guest]

Have you visited the clinical trial search of NIH? This may be a very good place to start. I do not have currently the URL for it.

Louis. . .

Re: Running out of ideas

I noticed that Mark Scholz at prostateoncology. com is not taking new patients. Who do you recommend who can provide inovative options for androgen independent patients? You seem to have good MD friends and I am desperate for ideas.>> > > HI Louis,> > What are your qualifications? You have made several > unqualified statements recently. Do you have any studies> or information to back up your statements?> > I know several men who are alive because of their ADT> treatments. Dr. Bob Leibowitz is a friend who has published> his studies about the successes he has had with his patients.> Dr. Mark Scholz is another friend who has treated

hundreds> of men with ADT and has had some great successes.> > Of course there is no 100 percent cure using any therapy.> But I do know many men who are still alive because of> their use of ADT.> > Please if you are going to make absolute statements, Please> offer some proof.> > > I wish you all the best> > Aubrey Pilgrim, DC (Ret.) Author of> A Revolutionary Approach to Prostate Cancer-Read the original book > for FREE at: _http://www.prostate pointers. org/prostate/ lay/apilgrim/ _ > (http://www.prostate pointers. org/prostate/ lay/apilgrim/) > Read new edition for FREE at > _http://www.cancer. prostate- help.org/ capilgr.htm_ (http://www.cancer. prostate- help.org/ capilgr.htm) > Dr. E. Crawford is co-author of the revision> > > In a message dated 11/26/2007 1:58:25 P.M. Pacific Standard Time, > lcarliner@.. . writes:> > ADT is NEVER a cure. It is a temporary palliative. It may be used as an > adjunct therapy prior to radiation or brachytherapy to shrink the prostate prior > to treatment. It is also a backstop in case any of the major treatment > modalities fail.> > Louis. . . > > > > > > > > > ************ ********* ********* ********Check out AOL's list of 2007's hottest > products.> (http://money. aol.com/special/ hot-products- 2007?NCID=aoltop00030000 000001)>

[Guest guest]

Hi Allan,

Dr. Lam works with Dr. Mark Scholz. They are both

very good. So perhaps Dr. Lam could see you.

Dr. Bob Leibowitz is also very good. If you are in the Los

Angeles area, his phone number is . I have

a short article about him in the revision in Chapter 13 on

Hormone Treatments.

I wish you all the best

Aubrey

I noticed that Mark Scholz at prostateoncology.com is not taking new patients. Who do you recommend who can provide inovative options for androgen independent patients? You seem to have good MD friends and I am desperate for ideas.

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Hi Allan,

Let me know how you make out.

Aubrey

Dr. Lam works in the same center as Dr. Mark Scholz and that center is not taking new patients right now, but I will contact Dr. Bob Leibowitz. Thanks for these contacts

Check out AOL Money Finance's list of the hottest products and top money wasters of 2007.

[Guest guest]

Dr. Lam works in the same center as Dr. Mark Scholz and that

center is not taking new patients right now, but I will contact Dr.

Bob Leibowitz. Thanks for these contacts

> Hi Allan,

>

> Dr. Lam works with Dr. Mark Scholz. They are both

> very good. So perhaps Dr. Lam could see you.

>

> Dr. Bob Leibowitz is also very good. If you are in the Los

> Angeles area, his phone number is . I have

> a short article about him in the revision in Chapter 13 on

> Hormone Treatments.

>

> I wish you all the best

>

> Aubrey

>

> In a message dated 11/26/2007 7:31:17 P.M. Pacific Standard Time,

> Allan@... writes:

>

>

>

>

> I noticed that Mark Scholz at prostateoncology.I noticed that Mark

Scholz

> patients. Who do you recommend who can provide inovative options

for

> androgen independent patients? You seem to have good MD friends and

I

> am desperate for ideas.

>

>

>

>

>

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>