RE: Elevated PSA

[Guest guest]

Larry --

" Palliative treatments " ?????

It's true that hormone-blocking drugs (and chemo) always fail _eventually_. But

they can give the patient quite a few years -- often, a decade or more -- of

decent living, as several members of my local PCa support group can testify.

I'm not suggesting that radiation treatment should be delayed -- that's a whole

different question.

>

> Dennis,

>

>

>

> I agree with that you should not wait too long to get the radiation.

> Studies have shown that the soon you get the treatments the better the

> chances of positive outcomes. Once the cancer escapes the pelvic bed there

> is nothing the doctors can do for a " cure " . The chemo and hormone

> treatments are just palliative treatments that just help extend your life

> with side effects.

>

[Guest guest]

OK, I agree, palliative may be a little

strong in its use here. I have a very close friend who has lived over 15

years on hormones before going refractory. He just recently decided to

for go chemo and let the disease run its course. He’s 82. Still,

hormones and chemo, at the moment, don’t cure they just delay the

inevitable. Which is the point that I wanted to make.

From:

ProstateCancerSupport [mailto:ProstateCancerSupport ]

On Behalf Of C

Sent: Wednesday, September 22,

2010 12:40 AM

To:

ProstateCancerSupport

Subject:

Re: Elevated PSA

Larry --

" Palliative treatments " ?????

It's true that hormone-blocking drugs (and chemo) always fail _eventually_. But

they can give the patient quite a few years -- often, a decade or more -- of

decent living, as several members of my local PCa support group can testify.

I'm not suggesting that radiation treatment should be delayed -- that's a whole

different question.

>

> Dennis,

>

>

>

> I agree with that you should not wait too long to get the radiation.

> Studies have shown that the soon you get the treatments the better the

> chances of positive outcomes. Once the cancer escapes the pelvic bed there

> is nothing the doctors can do for a " cure " . The chemo and

hormone

> treatments are just palliative treatments that just help extend your life

> with side effects.

>

[Guest guest]

Again,

I thank all that have been replying with information and support. This group

and members are fantastic!!!

I’ll

have the MRI and Bone Scan on Friday. They should have the information ready

for the doctor next Wednesday when I go in for the follow up. Your information

and from what I have been able to research puts me in favor of having the

radiation. If I’m going to have it, it must be soon.

Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Larry Helber

Sent: Tuesday, September 21, 2010 10:33

To: ProstateCancerSupport

Subject: RE: Elevated PSA

Dennis,

I agree

with that you should not wait too long to get the radiation. Studies

have shown that the soon you get the treatments the better the chances of

positive outcomes. Once the cancer escapes the pelvic bed there is

nothing the doctors can do for a “cure”. The chemo and

hormone treatments are just palliative treatments that just help extend your

life with side effects.

Don’t’

dwell too much on the side effects of the radiation treatments. For the

most part they will only be around a couple of months and then fade away.

Most of the side effects have simple treatments that will help you cope with

them. The “burns” that I received were limited to just some

minor itching and redness that were easily controlled with a cream that they

gave me. The diarrhea is annoying but keeping yourself clean, over the

counter medicines and diet selections makes it a minor inconvenience.

Fatigue can be combated with keeping busy and exercising and rest when you can.

You should be able to keep your same life style while you are going through

radiation treatments. The only difference is attending to your daily

appointments. Most cancer centers are usually very comfortable places.

Do

yourself a favor and don’t put off radiation treatments because of your

concerns of the side effects. You actually got the hard one, the side

effects of surgery, out of the way.

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of D

Sent: Monday, September 20, 2010 5:59 PM

To: ProstateCancerSupport

Subject: RE: Elevated PSA

,

Thanks for your reply. I still have not made a decision.

I have an appointment for a CT Simulation, to gather data for treatment, on the

29th. They said it will take about two weeks to compile the plan.

I’m in the process of scheduling a whole body bone scan and MRI of the

pelvis. I’ll have a PSA test on the 23rd, and have been on

Cipro for a week. I’m rereading sections of Dr. Walsh’s

book—Guide to Surviving Prostate Cancer--primarily the sections on

when surgery fails, about salvage surgery, and have been reading links that

were sent to me by others. Thanks for the links you sent, I’ll check

those out, too.

I think my biggest concern are side effects from

radiation—burns and discharge in the rectal area primarily. From what

I’ve read, if I’m going to get the treatment, it needs to be done

soon. The upper limit of PSA for treatment is at around .3, which is where I am

now.

The other question in my mind is, if I don’t treat

how long would be before I would start having serious issues with the cancer. I

guess if I could answer that, I’d have won the lottery.

I do appreciate the feedback from everyone. It does give

me more options that I haven’t thought about.

Dennis

Dennis J

dennisp42@...

Seffner, FL 33584

[Guest guest]

If a person on ADT dies of other causes

before the ADT fails, is the ADT successful because he die of other causes or did

the ADT not have enough time to fail? Sounds like a chicken vs egg

situation. J

I will be the first in line in being

overly optimistic about my prognosis. Actually I don’t even think

too much about my life expectancy, I didn’t worry about it before I got

sick so why should I worry about it now. I have heard anecdotally of men

living up to 15 years on hormones before they go refractory. People that

die of other causes don’t really count as successful ADT in my opinion

since it could be they just didn’t live long enough for it to go

refractory. I am looking for being refractory free 30 years from now before I

would call it successful. I am just over 50 years old, in today’s

world living until the age of 80 is not unreasonable, hence my 30 year quest.

I could go out and get run over by a car

tomorrow and the point may be mute, but that is a topic for a different group.

From:

ProstateCancerSupport [mailto:ProstateCancerSupport ]

On Behalf Of Terry Herbert

Sent: Wednesday, September 22,

2010 8:26 PM

To:

ProstateCancerSupport

Subject: RE:

Re: Elevated PSA

Larry and all,

I think the belief that ADT (Androgen Deprivation Therapy) always

fails, eventually or only delays the inevitable is not correct. Some years ago,

a study, which I can’t lay my hands on, demonstrated that many of the men

on ADT lived out their normal life expectancy (and died of something else, the

fate of most of us) while some of the anecdotal evidence (non-scientific and

valueless in the eyes of some) from men who have survived many years on ADT or

even on ADT vacation also demonstrate this fallacy.

No one on ADT should assume it will inevitably fail. There are no

unbreakable rules for prostate cancer.

[Guest guest]

Sorry I forgot I also wanted to comment on

your last line in my previous message. While I don’t agree with the

assumption that ADT may not fail (yet), I do agree with the second part that

there are no unbreakable rules for prostate cancer. My sincere hope is

that before I make that turn for the worst medical technology will stay ahead

of me and will come up with something that will help me to live past 80.

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert

Sent: Wednesday, September 22,

2010 8:26 PM

To:

ProstateCancerSupport

Subject: RE:

Re: Elevated PSA

Larry and all,

I think the belief that ADT (Androgen Deprivation Therapy) always

fails, eventually or only delays the inevitable is not correct. Some years ago,

a study, which I can’t lay my hands on, demonstrated that many of the men

on ADT lived out their normal life expectancy (and died of something else, the

fate of most of us) while some of the anecdotal evidence (non-scientific and

valueless in the eyes of some) from men who have survived many years on ADT or

even on ADT vacation also demonstrate this fallacy.

No one on ADT should assume it will inevitably fail. There are no

unbreakable rules for prostate cancer.

[Guest guest]

I agree Terry

The question then is defining when ADT has failed. I'm still on ADT after 14 years, but at one time I was changing drug regimes every 18 months.

RE: Re: Elevated PSA

I really don’t know how you measure the ultimate success of any therapy other than the fact that it keeps you alive until you die of another cause. I have seen many men in this kind of discussion seemingly thinking that, if only they can ‘cure’ their prostate cancer, they will be immortal, yet there is always about a 33:1 chance that even us men with a PCa diagnosis will die of something else before the disease gets us.:-)

As to ADT failure, the statement <snip> I have heard anecdotally of men living up to 15 years on hormones before they go refractory. <snip> still works on the assumption that they will inevitably go refractory. I’m saying that there is anecdotal and other evidence to say that there are men who are on or who have been on ADT who do NOT go refractory at any time. If you take a lok at a story like Doug Admas’ (at http://www.yananow.net/Mentors/DougA.htm ) you’ll see that he was also in his 50s when diagnosed with a Gleason 10 diagnosis. Surgery plus EBRT (External Beam Radiation Therapy) failed so he went on to ADT for a little over a year – stopping in 1998 – 12 years ago. At his last update he certainly wasn’t refractory and I’ll bet he wont be if I can catch him from his busy life and get him to give me an update. I’ll say it again – it is not a laid down Royal flush that every man on ADT will become refractory.

More than the men who die of prostate cancer are over the age of 80; only 10% are under the age of 70 – what makes you think you’ll be in the lower half of the life expectancy? Do you drive a good deal – that’s a greater risk than PCa for some men. If you haven’t seen it you may (or may not) find this piece of some interest http://www.yananow.net/elephant.htm

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Larry HelberSent: Thursday, 23 September 2010 11:42 AMTo: ProstateCancerSupport Subject: RE: Re: Elevated PSA

If a person on ADT dies of other causes before the ADT fails, is the ADT successful because he die of other causes or did the ADT not have enough time to fail? Sounds like a chicken vs egg situation. J

I will be the first in line in being overly optimistic about my prognosis. Actually I don’t even think too much about my life expectancy, I didn’t worry about it before I got sick so why should I worry about it now. I have heard anecdotally of men living up to 15 years on hormones before they go refractory. People that die of other causes don’t really count as successful ADT in my opinion since it could be they just didn’t live long enough for it to go refractory. I am looking for being refractory free 30 years from now before I would call it successful. I am just over 50 years old, in today’s world living until the age of 80 is not unreasonable, hence my 30 year quest.

I could go out and get run over by a car tomorrow and the point may be mute, but that is a topic for a different group.

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry HerbertSent: Wednesday, September 22, 2010 8:26 PMTo: ProstateCancerSupport Subject: RE: Re: Elevated PSA

Larry and all,

I think the belief that ADT (Androgen Deprivation Therapy) always fails, eventually or only delays the inevitable is not correct. Some years ago, a study, which I can’t lay my hands on, demonstrated that many of the men on ADT lived out their normal life expectancy (and died of something else, the fate of most of us) while some of the anecdotal evidence (non-scientific and valueless in the eyes of some) from men who have survived many years on ADT or even on ADT vacation also demonstrate this fallacy

[Guest guest]

Success is such a relative term.

There is no question about how ADT has helped men with PCa. I would call

that successful. The issue I have is with the statement

.. “I’m saying that there is

anecdotal and other evidence to say that there are men who are on or who have

been on ADT who do NOT go refractory at any time.”

Literally that statement is correct,

except your sample includes those who died before their ADT failed and those

who are using it as adjuvant therapy. Your statement gives the

implication that there is a chance you can live a very long life because of

it. What it actually means for those men where surgery, EBRT or IRT has failed,

they have up to 15 years (longest I have seen to date) of ADT before it fails

OR you died before that time. For someone in their 70s that can be a long

time. It is not so long for someone in their 40s or 50s. An unqualified statement

like that would give a false hope. Most doctors today still say it is not

if ADT fails it is when it fail. I have heard “you may die of

something else before then” added on. As I believe today.

At this time I have not heard of anyone

who has been on ADT more than 15 years and it hasn’t gone refractory. I

still hold out hope with medical discoveries everyday by the time I get there

ADT failure may not be an issue any more. If not, then I had a good run.

My new motto when I hop on my motorcycle:

I am working on my cure for cancer. J

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Terry Herbert

Sent: Thursday, September 23, 2010

12:50 AM

To: ProstateCancerSupport

Subject: RE:

Re: Elevated PSA

I really don’t know how you measure the ultimate success of

any therapy other than the fact that it keeps you alive until you die of

another cause. I have seen many men in this kind of discussion seemingly

thinking that, if only they can ‘cure’ their prostate cancer, they

will be immortal, yet there is always about a 33:1 chance that even us men with

a PCa diagnosis will die of something else before the disease gets us.:-)

As to ADT failure, the statement <snip> I have heard

anecdotally of men living up to 15 years on hormones before they go

refractory. <snip> still works on the assumption that they will

inevitably go refractory. I’m saying that there is anecdotal and other

evidence to say that there are men who are on or who have been on ADT who do

NOT go refractory at any time. If you take a lok at a story like Doug

Admas’ (at http://www.yananow.net/Mentors/DougA.htm

) you’ll see that he was also in his 50s when diagnosed with a

Gleason 10 diagnosis. Surgery plus EBRT (External Beam Radiation Therapy)

failed so he went on to ADT for a little over a year – stopping in 1998

– 12 years ago. At his last update he certainly wasn’t refractory

and I’ll bet he wont be if I can catch him from his busy life and get him

to give me an update. I’ll say it again – it is not a laid down

Royal flush that every man on ADT will become refractory.

More than the men who die of prostate cancer are over the age of

80; only 10% are under the age of 70 – what makes you think you’ll

be in the lower half of the life expectancy? Do you drive a good deal

– that’s a greater risk than PCa for some men. If you haven’t

seen it you may (or may not) find this piece of some interest http://www.yananow.net/elephant.htm

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ]

On Behalf Of Larry Helber

Sent: Thursday, 23 September 2010

11:42 AM

To: ProstateCancerSupport

Subject: RE:

Re: Elevated PSA

If a person on ADT dies of other causes before the ADT fails, is

the ADT successful because he die of other causes or did the ADT not have

enough time to fail? Sounds like a chicken vs egg situation. J

I will be the first in line in being overly optimistic about my

prognosis. Actually I don’t even think too much about my life

expectancy, I didn’t worry about it before I got sick so why should I

worry about it now. I have heard anecdotally of men living up to 15 years

on hormones before they go refractory. People that die of other causes don’t

really count as successful ADT in my opinion since it could be they just

didn’t live long enough for it to go refractory. I am looking for being

refractory free 30 years from now before I would call it

successful. I am just over 50 years old, in today’s world

living until the age of 80 is not unreasonable, hence my 30 year quest.

I could go out and get run over by a car tomorrow and the point may

be mute, but that is a topic for a different group.

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ]

On Behalf Of Terry Herbert

Sent: Wednesday, September 22,

2010 8:26 PM

To: ProstateCancerSupport

Subject: RE:

Re: Elevated PSA

Larry and all,

I think the belief that ADT (Androgen Deprivation Therapy) always

fails, eventually or only delays the inevitable is not correct. Some years ago,

a study, which I can’t lay my hands on, demonstrated that many of the men

on ADT lived out their normal life expectancy (and died of something else, the

fate of most of us) while some of the anecdotal evidence (non-scientific and

valueless in the eyes of some) from men who have survived many years on ADT or

even on ADT vacation also demonstrate this fallacy.

No one on ADT should assume it will inevitably fail. There are no

unbreakable rules for prostate cancer.

[Guest guest]

,

Are you a YANA " Mentor " ? Where can I find a history of your treatment ?

Sam.

>

> I agree Terry

>

> The question then is defining when ADT has failed. I'm still on ADT

after 14 years, but at one time I was changing drug regimes every 18

months.

>

>

>

>

> RE: Re: Elevated PSA

>

>

>

>

>

> Larry and all,

>

>

>

> I think the belief that ADT (Androgen Deprivation Therapy) always

fails, eventually or only delays the inevitable is not correct. Some

years ago, a study, which I can't lay my hands on, demonstrated that

many of the men on ADT lived out their normal life expectancy (and died

of something else, the fate of most of us) while some of the anecdotal

evidence (non-scientific and valueless in the eyes of some) from men who

have survived many years on ADT or even on ADT vacation also

demonstrate this fallacy.

>

>

>

> No one on ADT should assume it will inevitably fail. There are no

unbreakable rules for prostate cancer.

>

[Guest guest]

Terry,

A couple of questions.

1. Would you try to dig out that reference you mentioned in the thread

below, please?

2. How many Platinum Members are on YANA ? [ I can find about half a

dozen, surely there are more ? ]

Thanks again !

Sam.

>

> Larry and all,

>

>

>

> I think the belief that ADT (Androgen Deprivation Therapy) always

fails,

> eventually or only delays the inevitable is not correct. Some years

ago, a

> study, which I can't lay my hands on, demonstrated that many of the

men on

> ADT lived out their normal life expectancy (and died of something

else, the

> fate of most of us) while some of the anecdotal evidence

(non-scientific and

> valueless in the eyes of some) from men who have survived many years

on ADT

> or even on ADT vacation also demonstrate this fallacy.

>

>

>

> No one on ADT should assume it will inevitably fail. There are no

> unbreakable rules for prostate cancer.

>

>

>

> All the best

>

> Prostate men need enlightening, not frightening

>

> Terry Herbert - diagnosed in 1996 and still going strong

>

> Read A Strange Place for unbiased information at

> http://www.yananow.net/StrangePlace/index.html

>

>

>

> _____

>

> From: ProstateCancerSupport

> [mailto:ProstateCancerSupport ] On Behalf Of Larry

Helber

> Sent: Wednesday, 22 September 2010 7:59 PM

> To: ProstateCancerSupport

> Subject: RE: Re: Elevated PSA

>

>

>

>

>

> OK, I agree, palliative may be a little strong in its use here. I

have a

> very close friend who has lived over 15 years on hormones before going

> refractory. He just recently decided to for go chemo and let the

disease

> run its course. He's 82. Still, hormones and chemo, at the moment,

don't

> cure they just delay the inevitable. Which is the point that I wanted

to

> make.

>

>

>

> _____

>

> From: ProstateCancerSupport

> [mailto:ProstateCancerSupport ] On Behalf Of C

> Sent: Wednesday, September 22, 2010 12:40 AM

> To: ProstateCancerSupport

> Subject: Re: Elevated PSA

>

>

>

>

>

> Larry --

>

> " Palliative treatments " ?????

>

> It's true that hormone-blocking drugs (and chemo) always fail

_eventually_.

> But they can give the patient quite a few years -- often, a decade or

more

> -- of decent living, as several members of my local PCa support group

can

> testify.

>

> I'm not suggesting that radiation treatment should be delayed --

that's a

> whole different question.

>

>

>

[Guest guest]

Terry wrote...."There are no unbreakable rules for prostate cancer"

If ever any words were worthy of inscription on the fabled Obelisk,it would be these. I did not know you could translate Hieroglyphs Terry.

"Il faut d'abord durer" Hemingway

RE: Re: Elevated PSA

Larry and all,

I think the belief that ADT (Androgen Deprivation Therapy) always fails, eventually or only delays the inevitable is not correct. Some years ago, a study, which I can’t lay my hands on, demonstrated that many of the men on ADT lived out their normal life expectancy (and died of something else, the fate of most of us) while some of the anecdotal evidence (non-scientific and valueless in the eyes of some) from men who have survived many years on ADT or even on ADT vacation also demonstrate this fallacy

[Guest guest]

’s story is here http://www.yananow.net/Mentors/M.htm

All the best

Prostate men need enlightening, not

frightening

Terry Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of sammy_bates

Sent: Friday, 24 September 2010

3:37 AM

To: ProstateCancerSupport

Subject:

Re: Elevated PSA

,

Are you a YANA " Mentor "

? Where can I find a history of your treatment ?

Sam.

[Guest guest]

Thank you for the information (and thank you Terry for hosting the YANA

site).

-- As I understand it from your YANA listing, you did not immediately have

some form of castration therapy (i.e. bicalutamide) post surgery in 1996. Is

that correct ? How many cycles of castration therapy ON-OFF periods) have you

undertaken since then ? [ The dates you actually refer to are not clear - would

you mind appending the information ? ]

Your listing says you " added DES .. " . Was this in addition to bicalutamide or

did you take a break from bicalutamide before going on to DES ? It is usual to

take LHRH-a (zoladex or lupron) before DES. Have you not used LHRH-a at all ?

Sorry to hear your PSA has risen to around 50 ng/ml on DES. This would indicate

the presence of tumor somewhere - responding to low androgen - probably in the

bone but possibly in soft tissue also.

This is known as 'castration resistant prostate cancer' (CRPC). Have you tried

to identify the source ? A bone scan or MRI would help. Once identified you

could take steps to reduce the tumor load. I have some ideas but would need to

know more detail before I suggested anything further.

Feel free to contact me privately. Take care. -- Sam.

>

> 's story is here http://www.yananow.net/Mentors/M.htm

>

>

>

> All the best

>

> Prostate men need enlightening, not frightening

>

> Terry Herbert - diagnosed in 1996 and still going strong

>

> Read A Strange Place for unbiased information at

> http://www.yananow.net/StrangePlace/index.html

>

>

>

> _____

>

> From: ProstateCancerSupport

> [mailto:ProstateCancerSupport ] On Behalf Of sammy_bates

> Sent: Friday, 24 September 2010 3:37 AM

> To: ProstateCancerSupport

> Subject: Re: Elevated PSA

>

>

>

>

>

> ,

>

> Are you a YANA " Mentor " ? Where can I find a history of your treatment ?

>

> Sam.

>

[Guest guest]

Sammy

From 1996 to 2000 the PSA rose only slowly, the urologist at the time believed in delaying hormone manipulation to avoid side effects so long as the PSA remained low.

From when the PSA doubled from 9 to 19 in 6 months it was time to take action. I have not had a PSA low enough to have an ADT holiday. The change from bicultamide to Zoledex occurred after the end of the Onyvax trial and when the regrowth near the right kidney drain was found.

Best wishes

Re: Elevated PSA> > > > > > ,> > Are you a YANA "Mentor" ? Where can I find a history of your treatment ?> > Sam.>