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will1
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 12/10/2010 12:50 PM (GMT -6)   
I finally got my password fixed, so I can type in a few messagesl.  I am new to the group.  First post.  I have been a member of PPML for a lot of years, but just usually read the archives.
 
I think this is a more social group, which is good.  And there are a lot of restrictions, which I will respect, but believe not much learning can take place.  But my few posts will be social, and I will stay away from studies, and opinions.  This is hard for me to do.  But the boss is the boss.
 
Everyone be well.
 
Will H
Indiana

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 12/10/2010 1:03 PM (GMT -6)   
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
Age 67. Robotic prostatectomy 10/26/2010, due for HT and RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma.

will1
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 12/10/2010 1:16 PM (GMT -6)   
ok TTaylor:

Age 81, gleason 9, pas prior to surgery 2.3. Took prostate out and testies out at Mayo Clinic, Sep 4, 1994. Gleason 9, in lymph nodes. I have been very aggressive in my treatment plan. I have never had a rist in psa. Still less than .01. My twin brother, also gleason 9, passed away 6 years ago with prostate cancer. He was not very aggressive in his treatment plan.

Will H

will1
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 12/10/2010 1:27 PM (GMT -6)   
To TTaylor:

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

Will1
Age 81, gleason 9, psa prior to surgery 2.3. Took prostate out and testies out at Mayo Clinic, Sep 4, 1994. Gleason 9, in lymph nodes. I have been very aggressive in my treatment plan. I have never had a rist in psa. Still less than .01. My twin brother, also gleason 9, passed away 6 years ago with prostate cancer. He was not very aggressive in his treatment plan.

Will H

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/10/2010 1:29 PM (GMT -6)   
Will H, welcome to HW. As you say and are aware, this is a different place than you may be used to. The owner and moderators agree as the need for certain rules that others, including yourself, may not agree with, but we feel they are needed to keep the Forum what it is now, a nuturing, comfortable and friendly place where people can come and join with others in the same boat as them to share info, ask questions and join in mutual discussions, as long as they don't turn into disagreements, conflicts and such. We do try to allow the widest lattitude for discussions while keeping within the rules. I don't think anyone who has been here a while will say that the rules are very onerous. So draw up a chair, settle in and enjoy. There is a lot of learning to be done here, maybe not for years long G9's, but a wealth of info for new people who come here confused, scared and not knowing which way to turn. I hope you fit in great, as we need you long term guys experiences to help us understand what we can do, that it isn't a death sentence that some may think.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, next in Feb.
ED-total-Bimix 30cc

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 825
   Posted 12/10/2010 3:03 PM (GMT -6)   
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.
Dx 42
Gleason 6 (tertiary score 0)

open RP 10/08 Johns Hopkins

pT2 Organ confined Gleason 6

PSA
10/15/2009 <.1
10/15/2010 <0.03
10/15/2011 -

will1
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 12/10/2010 3:34 PM (GMT -6)   
Chris: I think according to the rules, I may be giving advice, if I say very much about my treatment plan.

I am new here and do not want to break any rulels.

Will1
Aged, gleason 9, psa prior to surgery 2.3. Took prostate and testies out at Mayo Clinic, Sep 4, 1994. Gleason 9, in lymph nodes. I have been very aggressive in my treatment plan. I have never had a rise in psa, 16 years out. Still less than .01. My twin brother, also gleason 9, passed away 6 years ago with prostate cancer. He was not very aggressive in his treatment plan.

Will H

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4154
   Posted 12/10/2010 3:46 PM (GMT -6)   

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)


Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 12/10/2010 4:17 PM (GMT -6)   
Will, another welcome to the forum, and I too am glad you have joined us.

We often give advice in this forum, and I am sure that any details you give about your treatment will comply with forum rules. Even for the most contentious recent issue here -- diet -- it is perfectly acceptable to say what your diet has been.

As a Gleason 8 with rising PSA, I am facing ADT (hormone treatment) and it has crossed my mind that orchiectomy might be an option for me. My father-in-law who is now 91 recently advised us that he had his testes out about 10 years ago as a treatment for PCa, and apart from a TURP that we did know about, had no other treatment.

So Will, I really am interested in your experience, and also that of your twin brother. What treatment did he have?
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4/12 cores
Non-nerve-sparing RRP 7 March 2008 age 63
Organ confined, neg margins. Gleason downgrade 4+4=8
Fully continent
Bimix worked well; now using just VED
PSA undetectable at first but now 0.3, doubling time 7 months
No radiation but ADT coming unless I can slow down the rise...

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/10/2010 4:25 PM (GMT -6)   
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... tongue
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, next in Feb.
ED-total-Bimix 30cc

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 12/10/2010 5:09 PM (GMT -6)   
Will,
Welcome to the forum and thanks to Jerry for encouraging you to join------ you may be reading a little too much into the rules. As James has said telling your story and describing the procedures is not telling somebody to do so and so. Your input here given your stats is invaluable and a clear demonstration that we should never surrender no matter how grim our diagnosis. Check out

www.yananow.org/Chart-Gleason.htm

when you get a chance, another great site with a ton of personal stories broken down by Gleason score, age, treatment etc.
We have guys come in here with bad stats who are worried about their future and a journey such as yours will inspire much confidence. Good on you in winning the battle and my condolences for the loss of your twin.
Bill
Biopsy

4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007

Post-op

Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct '07 <0.1 undetectable
PSA Jan '08 <0.1 undetectable
PSA April '08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August '08 <0.001 undetectable (disregarded due to lab "misreporting"-----it is not possible for any lab to get a reading of less than .003)

Post-op pathology rechecked by new lab:

Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September '08 <0.01 (new lab)
PSA February 09 <0.01
PSA May '10 <0.01

www.yananow.net/Mentors/BillM2.htm

Never underestimate old people ............ you don't get to be old by being stupid.

Post Edited (BillyMac) : 12/10/2010 4:12:29 PM (GMT-7)


will1
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 12/10/2010 5:14 PM (GMT -6)   
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
Aged, gleason 9, psa prior to surgery 2.3. Took prostate and testies out at Mayo Clinic, Sep 4, 1994. Gleason 9, in lymph nodes. I have been very aggressive in my treatment plan. I have never had a rise in psa, 16 years out. Still less than .01. My twin brother, also gleason 9, passed away 6 years ago with prostate cancer. He was not very aggressive in his treatment plan.

Will H

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4226
   Posted 12/10/2010 5:41 PM (GMT -6)   
Will,
Welcome to the forum. There may be many here that will disagree with your points, but the fact is that they worked for you. I strongly believe in being your own advocate and if something looks to be promissing and doesn't harm you then ther is no need to wait for a 15 year study to validate it. I wish you continued good health. For the higher gleason grades the most agressive approachs usually get the better results.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

will1
New Member


Date Joined Dec 2010
Total Posts : 15
   Posted 12/10/2010 6:56 PM (GMT -6)   
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
Aged, gleason 9, psa prior to surgery 2.3. Took prostate and testies out at Mayo Clinic, Sep 4, 1994. Gleason 9, in lymph nodes. I have been very aggressive in my treatment plan. I have never had a rise in psa, 16 years out. Still less than .01. My twin brother, also gleason 9, passed away 6 years ago with prostate cancer. He was not very aggressive in his treatment plan.

Will H

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 688
   Posted 12/10/2010 7:54 PM (GMT -6)   
Will,
Welcome. There is no doubt your self advocacy and treatment plane is working very well.
Thank you for your post.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6948
   Posted 12/10/2010 9:52 PM (GMT -6)   
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 shakehead
 
Again, welcome. I think your article is completely appropriate for HW. 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/10/2010 10:27 PM (GMT -6)   
Will,
It's great to have you come and join us here at Healingwell. You may remember, but you and I have communicated in the past. I have mentioned your story here before as well. Jerry and I met about a year ago on the InfoLink social network and when he mentioned he had a new friend that had similar results to his, I remissed on mentioning your case. LOL. And now I know it is you.

This is truly a great site. We have our discussions, opinions, and disagreements. But as you know that is this disease. There is room for all here, and certainly room for your expertise.

Thank you for coming and I hope you stay a while...

PS: It would be very difficult for anyone to argue with the great results you have had. We need more stories like yours and Terry Herbert's here... I know now quite a few guys with such great results, but many of them don't do anything online.

Tony Crispino
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

Post Edited (TC-LasVegas) : 12/10/2010 9:30:32 PM (GMT-7)


Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 12/11/2010 5:56 AM (GMT -6)   
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

Dx 2/2008, age 71, PSA 9.1, G8,T1c. daVinci surgery 5/2008, G8(5+3), pT2c. LFPF, good QOL. PSA <0.1 for 2 yrs. PSA rose to .2 at 30 months, start SRT 12/15/2010.

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3056
   Posted 12/11/2010 9:18 AM (GMT -6)   

Will,

Thanks for joining HW and working through the initial technical issues.

I don't know of a better interactive site than this.  It is filled with men and women that not only want to learn and live, but it also contains countless people that want to help and support others.  In my short time here I have gotten to know several people that I consider an inspiration to me.  Some through email, some just by the words I see on this site.  How can your life story not inspire guys like me.
 
Thanks again,
Jerry L.


Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation

PSA History:
-----------------
Nov. 2009 4.30
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05
Nov. 2010 <.05

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/11/2010 11:13 AM (GMT -6)   
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
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 12/11/2010 3:48 PM (GMT -6)   
Thanks Will, a most interesting story. As I see it, these parts of your treatment were different from your brother's:.
  • Orchiectomy
  • Flutamide and Proscar® soon after surgery and continued without a break since
  • Celebrex® maybe?
  • Lycopene in cooked tomatoes or capusles
  • Pomegranite as juice or capsules
  • Soy and fish oil capsules
Have I missed anything? Did you make any other changes to your diet? I'm thinking in particular of red meat and dairy products, that some studies have indicated may be a factor in PCa. What about sweet things like cake and chocolate? What about alcohol? -- some sources indicate that a daily glass of red wine is helpful for general health.

I'm not suggesting that anyone should slavishly follow what you are doing, but the fact that you are still here with a very low PSA means you have done something right. yeah
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4/12 cores
Non-nerve-sparing RRP 7 March 2008 age 63
Organ confined, neg margins. Gleason downgrade 4+4=8
Fully continent
Bimix worked well; now using just VED
PSA undetectable at first but now 0.3, doubling time 7 months
No radiation but ADT coming unless I can slow down the rise...

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 12/11/2010 6:33 PM (GMT -6)   
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.
DX at age 54 12/2009
Initial clinical profile: PSA 5.6, DRE-, high pre-op PSAV. Clinical stage T1c
Biopsy: Gleason 3+4 with PNI / 6 of 14 cores + / 10% of total length + / worst 45% +
TX: Robotic assisted RP 2/2010
Pathology: pT2cNx / Gleason 3+4 / PNI+ / SM- / SV- / EPE- / Tumor vol 7% / vol 40cc / 63 Grams
PSA - 4/10 <0.01, 8/10 0.01, 12/10 0.01

leeanglo
Regular Member


Date Joined Dec 2010
Total Posts : 191
   Posted 12/12/2010 11:31 AM (GMT -6)   
Good afternoon guys,ive just been reading wills thread on his long term battle with the enemy and i can only say that it is the most inspiring thread that ive read to date.Firstly Will, thanks you very much for giving myself and possibly some others the belief that its not all over for us metatastic members.Ive recently been diagnosed with T3A N2 MI GLEASON 4+3 =7 at age 44yrs so obviously wasnt over the moon with my news.Ive searched high and low over the past couple of months to find a long term survivor and i like your veiws ideas and strength,it gives us all hope.I am very stong minded and possitive about my desease and have every intention of beating it !!! (watch this space). When i read your story it helped me to truly believe that with the right combinations of medication and foods it will one day be possible.Thanks again Will!!.
                          p.s i already do the lycopenes,pomegranate( juice) vitamin E,A,
                                                               

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 12/12/2010 12:49 PM (GMT -6)   
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
Dx PCa Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4) - 8 cores, 4 positive, 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.
PSA's < .01, .01, .07, .28, .50. HT 5/10. IMRT 9/10.
PSA's post HT .01, < .01

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/12/2010 5:53 PM (GMT -6)   
OK now I'm a goofball,

Will,
You and one of my Facebook friends and a follower of my UsTOO FB page, too. LOL, sometimes I try to look hard for things under my nose. LOL...

I just wasn't connecting the dots...

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
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