Jerry L invited me to join

Will
First of all let me say "Welcome" Not exactly where you want to be but a great place to correspond with men and women that share your concerns. I would suggest that you include a signature with your posts. That way we can see what is going on health wise and compare our own medical condition to yours so we can more readily help you. You will find this to be a very caring group of people and eager to lend a hand. I wish for you the best, and I wish for you added health in the future.
Stay well and blessed
TTaylor

To TTaylor:

Ok, I figured it out and added it to my signature.

Will1

Will,

What a fantastic story. 16 years with metastatic Gleason 9. I as well as others I am sure would love to hear exactly what your treatment plan was.

Glad to see you here.

Will, welcome...nice to have a long term survivor among us!  Plenty of us talk about our treatment plans and plenty of us share advice.  I think you will find the rules a lot less onerous and restrictive than you may believe.  And, if you stray a bit, we have some excellent moderators with a velvet glove that get us back on the right path.

Tudpock (Jim)

Will, sharing your story isn't giving advice. The details will be fascinating, I am sure. The giving advice part starts when you tell others your path taken is the only way to go, so to speak...so speak, man, speak...

Ok, I will speak. I think it goes to attitude. I have written several articles, and to help with attitude, I will post this article published 2 or 3 years ago in PAACT magazine.

Here goes:

Folks, this is an article that I wrote about my
successful treatment plan and submitted to PAACT
Newsletter, and they just published it Dec 08.

Happy reading,

Will

LETTER TO THE

EDITOR

Identical twins

Diferent treatment plans

Diferent results

We depend upon research done in the Petri dish, on

mice, and on groups of people.

Perhaps we could look at identical twins, with each

undergoing a different treatment plan, for their

results. It would be pretty good research.

Here is a true story. Twin A: PSA went from 0.8 to

1.3, Gleason 9, Tetraploid grade tumor, cancer
present

in three lymph nodes that were removed. Twin

A had an orchiectomy and prostatectomy thirteen

years ago and has "never" had a rise in PSA (still

less than 0.01). Twin A is still alive.

Twin B: PSA went from 1.01 to 2.3, also Gleason

grade 9. Cancer only went as far as his seminal
vesicles.

Twin B had a prostatectomy. Twin B passed

away three years ago.

Question? Why is twin A still alive when the cancer

was in his lymph nodes, and has never had a rise

in PSA; and twin B passed away three years ago

and the cancer had only gone as far as his seminal

vesicles? That is what this discussion will be about.

I am twin A. I will make very few comments about

my brother's treatment (twin B), except to say he

was not nearly as aggressive in his treatment as I

was. He listened to his doctors; I listened to
myself. I

worked very hard to stay alive and was very
aggressive

in my treatment plan.

To start, we will talk about how smart you are. An

M.D. in my town grew marijuana in his backyard, got

caught, and is in jail. He was smart, but not "street

smart." There is a difference. So, I hang my hat on

being "street smart." I have three degrees, but they

are of no help, as none of them have anything to do

with health/medicine. I will explain my thinking, an

approach to my treatment plan, and how it differs

from many others.

First, three months after surgery, my PSA was
measured

at 0.1, which was considered undetectable

back in 1994. I asked my very skilled surgeon if I

should start flutamide. He said, "take nothing by

mouth. He said: we will use flutamide

if/when it comes back." I could hardly believe

his statement. If we cut out all of the cancer why
not

try to kill the remainder, if there happened to be
any

left? My street smarts kicked in, I got together with

my family doctor, and I convinced him to start me on

flutamide three months after surgery. A short time

later I started taking Proscar®. So, I was
essentially

on triple hormone therapy three months after

surgery fourteen years ago. Essentially, in fourteen

years I have never been off of triple hormone
therapy.

Where did the idea ever come from that after your

basic treatment: whether it is an orchiectomy,
radiation,

seeds, etc., that you should wait for the PSA to

rise, then start treating with medication? All wrong
in

my opinion, and experience.

If a boxer gets an eight count on his opponent, he

does not back off and let his opponent gain strength,

and start in again. No, he goes after the knockout.

If you know your cancer is down in the eighth

round, with your first basic treatment, why not go

for the knockout with additional medication. "Street

smarts."

So, first, in my opinion, start with medication right

after your basic treatment, whatever that is.

Second, take the shotgun approach to treatment.

When I was in the service, during rifle training, I

learned that the target can often move or another

target can develop. Often things can come into play

that can influence your cancer. So why take a rifle

approach, why not a shotgun approach? In my
treatment,

I did not want to start a medication and wait to

"see how it does." I didn't think this was street
smart

(you may just find out "how it does," and your cancer

continues). There are different elements to prostate

cancer. How do you know which element may arise

and restart or continue your cancer?

A shotgun approach goes something like this. If

there is good research on a medication/supplement,

why not start it immediately? You may not have a

second chance.

Perhaps your cancer is influenced by inflammation,

and you may not realize that you have an inflammation

problem. Why not start Celebrex®? You get the

picture. In a shotgun approach you start just about

anything that "good" research has shown may stop

or slow down cancer.

We could go on and on about the shotgun approach

to treatment with many medications and many

supplements. There are a lot of medications and

supplements that fit into the shotgun approach, but

not so many that you can't get a handle on them.

I try to stay on the cutting edge of research, with

proven treatments.

Here are some examples: lycopene. I phoned

Doctor Clinton (at Harvard then, now at Ohio State),

and he introduced me to lycopene and suggested I

eat cooked tomatoes. No capsules were available at

the time. I looked at the research and started eating

cooked tomatoes.

Pomegranate research looked overwhelming to

me, and no capsules were available at the time. I

purchased it as a liquid concentrate, shipped under

cold pack from California, then refrigerated it. When

the capsules became available I switched to the

capsules.

Soy and fish oil capsules are another example. The

research looked very good to me, so I started taking

both of them 13 years ago.

Often folks have a different point of view, and do
not

want to take triple hormone therapy, as they want

to keep an erection. That is understandable, if you

accept the risk. I often hear it said that while you

are on triple hormone therapy you do not feel good.

I don't feel bad. Remember women have very low

testosterone, and they are tennis players, basketball

players, etc.

Back on point. Street smarts again. If you purchase

a new car, never change the oil, and blow an engine,

then replace the engine, would you go back and not

change the oil in the car again? Of course not, you

would change the oil, and use preventive maintenance.

Same with cancer. Keep changing the oil, by

staying on your treatment plan.

So, as of today, I have never stopped my medications/

supplements from the beginning, and have

added more.

My family doctor, who is a very excellent doctor,

would not give me everything I asked for. He would

often look at my research, but he knew other doctors

at a large medical center nearby, so I suspect

he would contact them sometimes before writing

me the prescription. If his research showed
different,

he would not give me the prescription.

You may be thinking, "if he's so smart, why did he
let

his prostate cancer get as far as his lymph nodes?"

It wasn't my fault. I told the large medical
institution

during my annual physical, that I wanted a biopsy

and they wouldn't agree to give me one.

I told them my twin brother already had prostate

cancer, and showed them some research that said

to watch the trend of the PSA. Having a PSA of 4.0

is not the only indicator for a conclusive
determination

of prostate cancer. They wouldn't listen to me.

Six months later, the same doctor still refused to

give me a biopsy. Another month went by without

a biopsy, so I went to another doctor at the same

institution and begged for one. They finally did the

biopsy, but by then it was already advanced to my

lymph nodes. I was smarter than these doctors. It

is understandable to make mistakes. Even doctors

make mistakes, and that's ok, but they should

listen to their patients too, when good research is

presented to them.

Some doctors still think the PSA of 4.0 is the magic

number. I don't believe it.

I watch the trend in my blood work. I've talked with
a

lot of men, and often find that they do not know the

numbers on their blood work. They are not being

proactive or their own advocate.

Some doctors will use unreliable research or old

research to prove their point for a treatment plan

that they are suggesting for you. Don't listen. Do

your own research.

Let me give you an example: suppose a doctor

tells you that a prostatectomy is not any better than

watchful waiting, and the results are the same.

They may even use "research" that is fifteen years

old and done in a small country, which doesn't have

as good of doctors as we have, to prove their point.

You had better run for the door. If you are street

smart you will get on your computer and check

out the research yourself. One doctor recently

used research from the Lancet, 1996, 347:260 to

show that surgery accelerates cancer growth. (I

have never considered the Lancet as a top of the

line publication). He even went further and used

an article from the Scandinavian Journal of Urology

and Nephrology, 1995, 172:65-77 to prove

that radical prostatectomy versus no treatment for

prostate cancer were the same. Is he kidding me?

Using a Scandinavian study done in 1955 to prove

his point. He had better look at the research done

at Mayo Clinic. They have 3500 doctors, and do

many, many prostatectomy's a week and keep figures

on their long term results.

Are we to listen to some doctor that is using old

and unreliable research to prove his inferior point
of

view? Be your own advocate. We are not children.

What if a doctor tells you to cycle, that you will
get

better results than continuous treatment? Better

read the PAACT newsletter, September 2007

(page 3), with the most brilliant Dr. Fernand Labrie

writings.

Quote: "Frequent errors related to androgen

blockade:

1) Monotherapy alone, instead of combined

androgen blockade.

2) Too short a duration of treatment.

3) Treatment started too late.

4) "Intermittent treatment."

Dr. Labrie is one of the giants in prostate research

and treatment. I will listen to Doctors like him.

To summarize, my approach has been to first start

medication/supplements immediately after your

first basic treatment, whatever that is.

Then stay on it. Take a shotgun approach.

Listen only to good research and good Doctors.

Best,

Will

I am already impressed with the nice people in this group.

I hope my article comments do not cause an argument. But it is what I believe, and what I did, and am still doing.

I wish well to all.

Will H

Will,

Welcome to HW.

I arrived here the first time well after I had made some rather aggressive decisions - I went straight to adjuvant IGRT after DaVinci without waiting for a PSA rise. My post op path was ugly, to say the least.

Interesting reactions can be had here - John T. agreed that I was right to be aggressive, another (no longer present) poster called me a fool and idiot in separate posts. So you will get "varied" reactions. Don't be surprised.

I am of the opinion that each of us makes our own decisions, and once made and executed, you can't look back. I have no fear of telling someone what I did, or how I came to my decision. I will not tell anyone what treatment to chose. I can produce lists of real life experience on how not to prepare for surgery

Again, welcome. I think your article is completely appropriate for HW. 

Will,  Thanks for posting your story.  I really like your approach to diet and supplements and your results speak for themselves.  Please keep coming back and sharing your ideas.

Carlos

Will1, what a great intro to healing well. Guys like you are an inspiration to us. Your success in yoour treatment plan speaks for itself. Welcome to HW. You will be a great resource to us here.

Cajun Jeff

Will

Thanks for sharing your experience and perspective.

I have been thinking along similar lines myself, based on what I have been reading about other cancers. For example there was an important research report this week about HER2-sensitive breast cancers, where a combination of two chemos had much greater impact than either alone. Basically the treatment was used prior to surgery in early stage breast cancer patients and 50% of the patients had a complete remission:

emaxhealth.com said...

Three Drug Combination Shrinks HER-2 Positive Breast Cancer Tumors
Researchers at the 33rd Annual CTRC-AACR San Antonio Breast Cancer Symposium have presented data to show that a combination of three drugs – pertuzumab, trastuzumab (Herceptin), and docetaxel – eradicated a significant number of HER-2 positive breast cancer tumors in a Phase II study.
…
In the study, 417 women were given four cycles of therapy before they underwent either surgery or as neoadjuvant therapy. Lead investigator Dr. Luca Gianni, director of medical oncology at the National Cancer Institute in Milan, reports that the combination of the three drugs resulted in tumor eradication in 46% of the patients, which is 50% more than was seen with the standard therapy of just Herceptin plus chemotherapy.

Another example: For leukemia, many types of which are now highly curable, the critical breakthrough discovery was to combine three different drugs, each only partially effective on its own, into a three-drug cocktail. The cocktail has a very high success rate.

So I am increasingly coming to believe in the idea you recommend -- massive attack at the beginning, rather than using several drugs in succession and allowing the cancer to regroup and develop resistance. (I haven't done this myself, given that my PC is was a gleason 3+4 and relatively small, but if it comes back I will aim to hit it with everything all at once, and not attack sequentially.) You can see why the docs hold off on this given the high side effects of the treatments: if a given population has an 80% chance of 10 year recurrence free survival, is it justified to give very aggressive treatment to the whole population? But, even though I can understand the logic, I think the conventional approach probably costs lives.

Thanks again for your perspective.

Will1, I aslo welcome you to HW and appreciate you sharing your story with us. I have the same questions as Piano and would appreciate the additional info. Your approach is very similar to Mr Myers treament plan, which I am following. Except of course the intermitent HT. You have certainly given us some "food for thought". BB