RE: Re: PSA is down

[Guest guest]

Sammy,

You wanted "hands up". I've been on ADT for nearly three years. I had EBRT in April/May 2008, after my prostate had shrunk somewhat. I started in Oct 2007 with Gleason 9 and PSA 62. I did initially experience some lethargy and weight gain, but I realised that one begat the other and that the solution lay in my own hands. I found gym work frankly boring, but I walk vigorously five to six miles a day (a Pointer helps and so do 18 holes of golf a week - badly, but on a very hilly course). I am lighter than I've been for 35 years and I would say pretty fit. Hot flushes remain a problem. I'd much rather not have to go through them, especially on warm summer nights (of which, thank God, we've had a couple of months recently in the UK). Of course, after EBRT and Zoladex, I'm no Errrol Flynn, but at 67, I've had my share of thrills (possibly a lot more than my share, but I've been lucky)

so abstinence is not a problem for me or my long suffering wife of over 38 years. There is no evidence of bone density problems and all organs are operating well. I do consume pomegranate pills (can't find the juice at a sensible price any more), tomato juice and half a bottle of red wine daily, Vitamin D in the winter months and look after my joints with fish oil capsules and glucosamine sulphate, but I'd say that otherwise my diet is a normal healthy one (varied meats, plenty of fruit and vegetables).

I do think that positive thinking and a determination to live life to the full are important factors. The mind drives the body. My experience is that positive thinking, good diet and fitness are key factors, but extrapolating from one man's experience to generalise for many is a risky thing to do. I just count myself lucky to have an intact, very small, soft and smooth - if useless - prostate (still slowly recovering from the EBRT, so my oncologist states) with a PSA at a quarter what it would be normally for a man of my age (and years to go before I need be concerned about my Prostate Cancer, again, according to my oncologist).

I think maybe an excess of testosterone leads to a lot of behavioural problems for men and in our final decades when we should expect to have a bit less buzzing around anyway, to find that we have to do without it and rely instead upon our little grey cells, as Poirot would say, is not a disaster, may even be a blessing.

So to those contemplating the treatment I've had, who also have locally advanced PCa, I'd say, life goes on, there's an effective treatment, side effects are a nuisance, but need not be a disaster and please don't be put off by the horror stories of some men. I've been lucky so far, you could very well be, too.

To: ProstateCancerSupport Sent: Saturday, 7 August, 2010 0:09:09Subject: Re: PSA is down

Steve,Sorry I have to contradict you here when you say ..> (1) There is no need to suffer the SEs of ADT (aka "hormones").The fact is that as long as you are on ADT / "hormones" / "TIP" as the links put it (I call it "castration therapy") you are going to experience "SEs of ADT" as you put it. [ i.e. side effects of androgen deprivation therapy -- Sorry for all the acronyms to anyone here for the first time.] Anyhow, to continue .. This is what I read several times on the PCRI site where your links point:-"Unfortunately there is no way to prevent or treat this problem. [ i.e. "SEs of ADT"] However, once testosterone deprivation therapy is completed and testosterone levels return to normal .. "So, when I see in the thread below a problem with side effects from treatment, I don't think it is right to say it is "no problem". It is a BIG problem as long as you

are taking the Zoladex / Lupron, and one that will always be with many men as long as this damned castration therapy is the mainstream medical treatment of choice. I have great sympathy for the guy in the thread (Ralph I think) who let his PSA go up to 1800+ because he just hated being on castration therapy. I know has said he does not suffer from "SEs of ADT", but how many men are like him ? How about a "hands up" ? I am not for sure. "SEs of ADT" have always been an issue for me, and indeed have driven me to seek alternative ways of managing my PC. I too have allowed my PSA to go higher than maybe it should have in the past. There are other guys who do testosterone with more success - but anyhow, I am still around after 15 years. The pity is not many men give testosterone a try, and not many of those who do, effectively communicate what they are doing.Sam. >> On 8/6/10, Ralph Van Riper replied to Alan Meyer:> > > I had been monitoring my PSA in the past more closely but waited> > 8 months before the 1,815 results. The test reults 8 months prior> > were 67.00 & I knew the time was coming to go back on hormones,> > I've experienced bad reactions to the side effects & was reluctant> > to get PSA tested---but I never thought I would see> > 1,800+.....thought it would be more like 200+> > (1) There is no need to suffer the SEs of ADT (aka "hormones").> > Two excellent articles on coping are:> > http://www.prostate -cancer.org/ education/ andind/Guess_ TestosteroneSide Effects.html> or> http://tinyurl. com/2ymb8f> > http://www.prostate -cancer.org/ education/ sidefx/Strum_ ADS.html> or>

http://tinyurl. com/g6fzp> > All too many medics either do not know or do not care about side > effects of treatment.> > (2) Is your medic a urologist? A uro is a surgeon and only a surgeon.> > I suggest that consultation with a real cancer specialist, a > medical oncologist, is overdue.>

[Guest guest]

I echo the other 's positive experience (some what positive anyway).I have been on Lurpon for 5.5 years, continuously. During that I have had Casodex, HDK+HC, Nilandorn, Taxotere,HDK+_HC again, Radiation (for pain) and now DES.  I'm a bot younger than most but I experienced someone the same side effects. The hot

flashes were pretty bad the first two years, lessened after Tax, and are almost non-existent now that I am on DES.IMHO, it takes a balanced attack to fight Advanced PCa. I have had extensive mets since the start, my case is different than most, but not all. It takes the right frame of mind, diet, exercise, supplements, the right pharmaceuticals, a good support staff including family, friends and doctors. I have been fortunate.

The side effects of ADT can usually be dealt with, death on the other hand, cannot. ADT gets a bum rap sometimes and I understand why, but in many cases it provides many, many benefits.e

 

Sammy,

 

You wanted " hands up " .  I've been on ADT for nearly three years.  I had EBRT in April/May 2008, after my prostate had shrunk somewhat.  I started in Oct 2007 with Gleason 9 and PSA 62.  I did initially experience some lethargy and weight gain, but I realised that one begat the other and that the solution lay in my own hands.  I found gym work frankly boring, but I walk vigorously five to six miles a day (a Pointer helps and so do 18 holes of golf a week - badly, but on a very hilly course).  I am lighter than I've been for 35 years and I would say pretty fit.  Hot flushes remain a problem.  I'd much rather not have to go through them, especially on warm summer nights (of which, thank God, we've had a couple of months recently in the UK).  Of course, after EBRT and Zoladex, I'm no Errrol Flynn, but at 67, I've had my share of thrills (possibly a lot more than my share, but I've been lucky)

so abstinence is not a problem for me or my long suffering wife of over 38 years.  There is no evidence of bone density problems and all organs are operating well.  I do consume pomegranate pills (can't find the juice at a sensible price any more), tomato juice and half a bottle of red wine daily, Vitamin D in the winter months and look after my joints with fish oil capsules and glucosamine sulphate, but I'd say that otherwise my diet is a normal healthy one (varied meats, plenty of fruit and vegetables).

 

I do think that positive thinking and a determination to live life to the full are important factors.  The mind drives the body.  My experience is that positive thinking, good diet and fitness are key factors, but extrapolating from one man's experience to generalise for many is a risky thing to do.  I just count myself lucky to have an intact, very small, soft and smooth - if useless -  prostate (still slowly recovering from the EBRT, so my oncologist states) with a PSA at a quarter what it would be normally for a man of my age (and years to go before I need be concerned about my Prostate Cancer, again, according to my oncologist).

 

I think maybe an excess of testosterone leads to a lot of behavioural problems for men and in our final decades when we should expect to have a bit less buzzing around anyway, to find that we have to do without it and rely instead upon our little grey cells, as Poirot would say, is not a disaster, may even be a blessing.

 

So to those contemplating the treatment I've had, who also have locally advanced PCa, I'd say, life goes on, there's an effective treatment, side effects are a nuisance, but need not be a disaster and please don't be put off by the horror stories of some men.  I've been lucky so far, you could very well be, too.

 

To: ProstateCancerSupport

Sent: Saturday, 7 August, 2010 0:09:09Subject: Re: PSA is down 

Steve,Sorry I have to contradict you here when you say ..> (1) There is no need to suffer the SEs of ADT (aka " hormones " ).The fact is that as long as you are on ADT / " hormones " / " TIP " as the links put it (I call it " castration therapy " ) you are going to experience " SEs of ADT " as you put it. [ i.e. side effects of androgen deprivation therapy --  Sorry for all the acronyms to anyone here for the first time.]

Anyhow, to continue .. This is what I read several times on the PCRI site where your links point:- " Unfortunately there is no way to prevent or treat this problem. [ i.e. " SEs of ADT " ] However, once testosterone deprivation therapy is completed and testosterone levels return to normal .. "

So, when I see in the thread below a problem with side effects from treatment, I don't think it is right to say it is " no problem " . It is a BIG problem as long as you

are taking the Zoladex / Lupron, and one that will always be with many men as long as this damned castration therapy is the mainstream medical treatment of choice. I have great sympathy for the guy in the thread (Ralph I think) who let his PSA go up to 1800+ because he just hated being on castration therapy.

I know has said he does not suffer from " SEs of ADT " , but how many men are like him ? How about a " hands up " ? I am not for sure. " SEs of ADT " have always been an issue for me, and indeed have driven me to seek alternative ways of managing my PC. I too have allowed my PSA to go higher than maybe it should have in the past.  There are other guys who do testosterone with more success - but anyhow, I am still around after 15 years.  The pity is not many men give testosterone a try, and not many of those who do, effectively communicate what they are doing.

Sam. >> On 8/6/10, Ralph Van Riper replied to Alan Meyer:> > > I had been monitoring my PSA in the past more closely but waited> > 8 months before the 1,815 results. The test reults 8 months prior

> > were 67.00 & I knew the time was coming to go back on hormones,> > I've experienced bad reactions to the side effects & was reluctant> > to get PSA tested---but I never thought I would see

> > 1,800+.....thought it would be more like 200+> > (1) There is no need to suffer the SEs of ADT (aka " hormones " ).> > Two excellent articles on coping are:> > http://www.prostate -cancer.org/ education/ andind/Guess_ TestosteroneSide Effects.html

> or> http://tinyurl. com/2ymb8f> > http://www.prostate -cancer.org/ education/ sidefx/Strum_ ADS.html

> or>

http://tinyurl. com/g6fzp> > All too many medics either do not know or do not care about side > effects of treatment.> > (2) Is your medic a urologist? A uro is a surgeon and only a surgeon.

> > I suggest that consultation with a real cancer specialist, a > medical oncologist, is overdue.>

-- Emersonwww.flhw.orgEvery 2.25 minutes a man is diagnosed with prostate cancer.

Every 16.5 minutes a man, dies from the disease.

[Guest guest]

> Steve,

>

> Sorry I have to contradict you here when you say ..

>

>> (1) There is no need to suffer the SEs of ADT (aka

>> " hormones " ).

>

> The fact is that as long as you are on ADT / " hormones " /

> " TIP " as the links put it (I call it " castration therapy " )

> you are going to experience " SEs of ADT " as you put it. [

> i.e. side effects of androgen deprivation therapy -- Sorry for

> all the acronyms to anyone here for the first time.]

Not necessarily. Some are, according to what I've seen fortunate

enough to experience no SEs. In short, judging from what I've

seen, which is a lot, any individual patient, might experience

some, none, or all of the possible SEs if he does nothing to

cope. The lucky guy with no SEs can spend his money on Refreshing

Beverages.

> Anyhow, to continue .. This is what I read several times on

> the PCRI site where your links point:-

>

> * " Unfortunately there is no way to prevent or treat this

> problem. [ i.e. " SEs of ADT " ] However, once testosterone

> deprivation therapy is completed and testosterone levels

> return to normal .. " *

Very clever, Sam, but it won't wash.

That carefully-cut sentence is from

" Preventing and Treating the Side Effects of Testosterone

Deprivation Therapy in Men with Prostate Cancer: A Guide for

Patients and Physicians " By Brad Guess PA-C, Former PCRI

Executive Director

It is the section:

> *Dry Ejaculation*

>

> In men who have an intact prostate and have not had it

> removed, radiated or frozen, the normal fluid production of

> the prostate stops while they are on testosterone deprivation

> therapy. Therefore, when a man ejaculates it will be dry. Some

> men report that the pleasure of an orgasm with dry ejaculation

> is reduced.

>

> Prevention / Treatment Strategies

> Unfortunately there is no

> way to prevent or treat this problem. However, once

> testosterone deprivation therapy is completed and

> testosterone levels return to normal, the prostate typically

> begins to produce fluid again and ejaculate returns.

*************

> So, when I see in the thread below a problem with side

> effects from treatment, I don't think it is right to say it is

> " no problem " .

Who said that? I didn't.

Fundamentally, there *are* means to cope with almost all of the

SEs of ADT and it is almost criminal that all too many medics

either do not know or do not care about them.

For some layman to falsely tell what should be his brother in

adversity that there is no hope for relief is........well, never

mind.

Regards,

Steve J

" You live and learn -- or you don't live long. "

--Lazarus Long

[Guest guest]

Hello Sammy,

Am I reading your post correctly? It would appear that you are saying you are on some form of testosterone SUPPLEMENTATION therapy as opposed to testosterone abalation therapy? If so is it under the recommendation of your uro/onco? I ask because I'm 50, and according to my Onco should be preparing myself mentally to face ADT in September. She believes my 40 sessions of IGRT 21 months ago have probably failed and ADT will be the next step. I'm not convinced myself that my fairly small increases in my last 2 quarters' PSA levels indicate failure, so am really keeping my fingers crossed and overdosing on pomegranate supplements until my next PSA test. As I say I'm 50 and to be honest my sex life and my libido are everything to me. I appreciate the numerous guys in their 70's who have responded to you and said 'ADT ain't so bad, I've got plenty of memories and I enjoy seeing my grandkids grow' but THAT IS JUST NOT MY LIFE.

As I'm symptom free and thankfully IGRT has not diminished my sexual capabilities or desires to any great degree ( if at all) I am just not ready to go down the 'castration therapy route' just yet. If, as all 3 of my Onco's have repeated ad nauseam, that my PCa is particularly aggressive I'm not convinced ADT will significantly increase my lifespan anyway but will seriously reduce my quality of life almost as soon as I agree to start it, I'm just not sure it's a route I want to go down. I would rather have 3 years of life with the status quo than 5, 6, or 7 years as someone without a sexual appetite.

If you are on a testosterone supplementation regime I would be really grateful to know the details. In the meantime I would be grateful to hear from anyone of a similar age to me and sexually active how ADT does affect their libido - I simply can't imagine life without one - even the temporary reduction in mine post TX was weird beyond belief for me !

Best regards,

Chris.Malaga,Spain

Re: PSA is down

Steve,Sorry I have to contradict you here when you say ..> (1) There is no need to suffer the SEs of ADT (aka "hormones").The fact is that as long as you are on ADT / "hormones" / "TIP" as the links put it (I call it "castration therapy") you are going to experience "SEs of ADT" as you put it. [ i.e. side effects of androgen deprivation therapy -- Sorry for all the acronyms to anyone here for the first time.] Anyhow, to continue .. This is what I read several times on the PCRI site where your links point:-"Unfortunately there is no way to prevent or treat this problem. [ i.e. "SEs of ADT"] However, once testosterone deprivation therapy is completed and testosterone levels return to normal .. "So, when I see in the thread below a problem with side effects from treatment, I don't think it is right to say it is "no problem". It is a BIG problem as long as you are taking the Zoladex / Lupron, and one that will always be with many men as long as this damned castration therapy is the mainstream medical treatment of choice. I have great sympathy for the guy in the thread (Ralph I think) who let his PSA go up to 1800+ because he just hated being on castration therapy. I know has said he does not suffer from "SEs of ADT", but how many men are like him ? How about a "hands up" ? I am not for sure. "SEs of ADT" have always been an issue for me, and indeed have driven me to seek alternative ways of managing my PC. I too have allowed my PSA to go higher than maybe it should have in the past. There are other guys who do testosterone with more success - but anyhow, I am still around after 15 years. The pity is not many men give testosterone a try, and not many of those who do, effectively communicate what they are doing.Sam. >> On 8/6/10, Ralph Van Riper replied to Alan Meyer:> > > I had been monitoring my PSA in the past more closely but waited> > 8 months before the 1,815 results. The test reults 8 months prior> > were 67.00 & I knew the time was coming to go back on hormones,> > I've experienced bad reactions to the side effects & was reluctant> > to get PSA tested---but I never thought I would see> > 1,800+.....thought it would be more like 200+> > (1) There is no need to suffer the SEs of ADT (aka "hormones").> > Two excellent articles on coping are:> > http://www.prostate-cancer.org/education/andind/Guess_Testost eroneSideEffects.html> or> http://tinyurl.com/2ymb8f> > http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html> or> http://tinyurl.com/g6fzp> > All too many medics either do not know or do not care about side > effects of treatment.> > (2) Is your medic a urologist? A uro is a surgeon and only a surgeon.> > I suggest that consultation with a real cancer specialist, a > medical oncologist, is overdue.>

[Guest guest]

I'm inclined to think about the side effects of ADT in light of

a number of separable issues:

1. How bad are the side effects for a particular patient?

They really do seem to vary. Most men get hot flushes. Some

don't. Some get them, but they aren't too bad. Some get them

initially but find that they have gone away after some period of

time.

Most men get weaker and many gain weight. Others don't, or at

least don't do so to the same degree.

Most men lose their libido and their ability to have sex. Some

don't (I know that because, although I lost all my libidio, I was

still able to have sex on ADT - though it required a lot of

psychological work to make it happen.)

2. How well can a man compensate for his side effects?

From my own experience and from the reports of others, I believe

that a strong program of exercise combined with a reasonable diet

can mitigate a significant amount of the weakening, weight gain,

and emotional depression, of ADT.

I also found that I could overcome the destruction of my libido

by working at it.

3. Are there medical interventions that can help?

Some men have reported that Megace or similar drugs have

eliminated hot flashes. Some studies have indicated that

bisphosphonates can mitigate weakening of the bones.

4. How much does a particular man actually _suffer_ from side

effects?

I think it's possible to find two men with the exact same

objectively measurable side effects, one of whom reports that

they are terrible and the other reports that they're no problem

at all.

This might have something to do with lifestyle. One guy is a

competitive athlete with an active sex life who finds that both

have gone downhill. He's very upset. The other guy has no

athletic or sexual life and gets his kicks playing the piano and

reading books. He wonders what the fuss is all about. ADT has

not interfered with his life at all.

It might also have to do with attitude. One guy is a biker who

rides 30 miles a day up and down hills. He loses some of his

strength, gives up, and spends his time watching TV and feeling

depressed. The other guy is also a biker doing the same amount

of riding. He loses some of his strength so he picks out a

different course with fewer hills and maybe fewer miles, or he

substitutes hiking for biking, and he enjoys himself just as

much. This sounds like what has done.

My own view of ADT is as follows:

First, determine whether ADT will extend your life and/or

alleviate symptoms. If it will, you have a _prima facie_ reason

to go on ADT. Try it. Get the injection.

Then do everything you can maintain a high quality of life. This

may mean:

Exercising more or less than you did in the past - keeping

the level of exercise as high as you can reasonably sustain,

but not higher.

Eating a reasonable diet. Not allowing yourself to gain

weight.

Getting a little extra sleep each night, if needed.

Making the effort to sustain some kind of a sex life, if you

had a good one before - even if it's mainly to satisfy your

partner.

Changing your lifestyle, if needed. If there's something you

loved to do that you can no longer do, then find something

else you love to do that you can do. Focus on that.

Seeking medical help if needed for hot flushes or weakening

bones. Personally, I would not seek such help unless I was

sure there was a problem.

Only if all of those failed and I was very unhappy would I

consider trading off life extension in order to get off ADT.

Alan

[Guest guest]

El Horizonte wrote:

....

> I would rather have 3 years of life with the status quo than 5,

> 6, or 7 years as someone without a sexual appetite.

....

I understand that point of view and I would support you in making

such a choice. It's your right and it may be right for you.

There's nobody other than you who can say, one way or the other.

But having said that, I'd also like to say that I believe that

there are a dozen, or a hundred, or a thousand ways to lead a

happy and satisfying life. You've explored some of them and,

apparently, been very successful. It sounds like you've been

very happy and very satisfied with the choices you've made and

the life you have led.

That's great. Many people cannot say as much.

Still, I would like to submit to you that you are a very

resourceful and open minded person. You might be surprised at

all of the ways that are open to you to be happy and satisfied.

There are many realms of experience out there waiting for you and

some of them may be every bit as fine as the experience you've

had already. So I would think twice or three or four times about

turning down ADT if that's what the best medical advice

prescribes for you. Turning it down might indeed be the best

choice for you. But, in spite of what you might think now, it

might not.

I have wondered what I would do if I were crippled and had to

look forward to a life in a wheelchair, in constant pain, and

someone handed me a bottle of pills that would enable me to end

it all.

I think I would like having those pills. I think I would get

great comfort from knowing that my future was in my hands. But

then I think I would put the bottle in my pocket. I'd think,

" Well, I can take those pills tomorrow, but first let me see if I

can spend a little time with my wife, or have a chat with one of

my friends, or my kids, or my granddaughter. Let me listen to

some Mozart again before I swallow the pills. Let me listen to

some blues guitar. I can take the pills, but first I think I'll

try to read some of the books by my favorite authors that I never

got to. First let me see the Woody and Steve movies

that I missed. I can take the pills, but before I do that, let

me check the prostate cancer newsgroup and see if there's some

poor soul in trouble that I could help. "

I don't know for sure what I would do, and I do know for sure

that I'd have a lot of bad days and nights. But I'm thinking

that, just maybe, some long years could go by without me taking

those pills.

Life is full of pain and frustration, but it's still pretty sweet

too.

Alan

[Guest guest]

Alan, thank you for posting such an

eloquent reply. I was trying to word an good reply about the effects of

ADT but couldn’t word it in such a way without sounding rude. As

for me the cancer itself gave me the ED that allowed an active sex life so the

ADT didn’t change things much. I can still have fun with my partner

though. I may not initiate it but in respect for my partner I put forth

the effort. In the early stages of my diagnosis I was like really

concerned about my loss of “masculinity” but I have since learned

that there is a lot more to life than just sex. Yes I would love having a

more active libido but I have learned to live with it and I still am loving

life.

From:

ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer

Sent: Saturday, August 07, 2010 7:11

PM

To:

ProstateCancerSupport

Subject: Re:

Re: PSA is down

I'm inclined to think about the side effects of ADT in

light of

a number of separable issues:

1. How bad are the side effects for a particular patient?

They really do seem to vary. Most men get hot flushes. Some

don't. Some get them, but they aren't too bad. Some get them

initially but find that they have gone away after some period of

time.

Most men get weaker and many gain weight. Others don't, or at

least don't do so to the same degree.

Most men lose their libido and their ability to have sex. Some

don't (I know that because, although I lost all my libidio, I was

still able to have sex on ADT - though it required a lot of

psychological work to make it happen.)

2. How well can a man compensate for his side effects?

From my own experience and from the reports of others, I believe

that a strong program of exercise combined with a reasonable diet

can mitigate a significant amount of the weakening, weight gain,

and emotional depression, of ADT.

I also found that I could overcome the destruction of my libido

by working at it.

3. Are there medical interventions that can help?

Some men have reported that Megace or similar drugs have

eliminated hot flashes. Some studies have indicated that

bisphosphonates can mitigate weakening of the bones.

4. How much does a particular man actually _suffer_ from side

effects?

I think it's possible to find two men with the exact same

objectively measurable side effects, one of whom reports that

they are terrible and the other reports that they're no problem

at all.

This might have something to do with lifestyle. One guy is a

competitive athlete with an active sex life who finds that both

have gone downhill. He's very upset. The other guy has no

athletic or sexual life and gets his kicks playing the piano and

reading books. He wonders what the fuss is all about. ADT has

not interfered with his life at all.

It might also have to do with attitude. One guy is a biker who

rides 30 miles a day up and down hills. He loses some of his

strength, gives up, and spends his time watching TV and feeling

depressed. The other guy is also a biker doing the same amount

of riding. He loses some of his strength so he picks out a

different course with fewer hills and maybe fewer miles, or he

substitutes hiking for biking, and he enjoys himself just as

much. This sounds like what has done.

My own view of ADT is as follows:

First, determine whether ADT will extend your life and/or

alleviate symptoms. If it will, you have a _prima facie_ reason

to go on ADT. Try it. Get the injection.

Then do everything you can maintain a high quality of life. This

may mean:

Exercising more or less than you did in the past - keeping

the level of exercise as high as you can reasonably sustain,

but not higher.

Eating a reasonable diet. Not allowing yourself to gain

weight.

Getting a little extra sleep each night, if needed.

Making the effort to sustain some kind of a sex life, if you

had a good one before - even if it's mainly to satisfy your

partner.

Changing your lifestyle, if needed. If there's something you

loved to do that you can no longer do, then find something

else you love to do that you can do. Focus on that.

Seeking medical help if needed for hot flushes or weakening

bones. Personally, I would not seek such help unless I was

sure there was a problem.

Only if all of those failed and I was very unhappy would I

consider trading off life extension in order to get off ADT.

Alan

[Guest guest]

Hi AlanThat was a great post!BOB G

I'm inclined to think about the side effects of ADT in light of

a number of separable issues:

1. How bad are the side effects for a particular patient?

They really do seem to vary. Most men get hot flushes. Some

don't. Some get them, but they aren't too bad. Some get them

initially but find that they have gone away after some period of

time.

Most men get weaker and many gain weight. Others don't, or at

least don't do so to the same degree.

Most men lose their libido and their ability to have sex. Some

don't (I know that because, although I lost all my libidio, I was

still able to have sex on ADT - though it required a lot of

psychological work to make it happen.)

2. How well can a man compensate for his side effects?

From my own experience and from the reports of others, I believe

that a strong program of exercise combined with a reasonable diet

can mitigate a significant amount of the weakening, weight gain,

and emotional depression, of ADT.

I also found that I could overcome the destruction of my libido

by working at it.

3. Are there medical interventions that can help?

Some men have reported that Megace or similar drugs have

eliminated hot flashes. Some studies have indicated that

bisphosphonates can mitigate weakening of the bones.

4. How much does a particular man actually _suffer_ from side

effects?

I think it's possible to find two men with the exact same

objectively measurable side effects, one of whom reports that

they are terrible and the other reports that they're no problem

at all.

This might have something to do with lifestyle. One guy is a

competitive athlete with an active sex life who finds that both

have gone downhill. He's very upset. The other guy has no

athletic or sexual life and gets his kicks playing the piano and

reading books. He wonders what the fuss is all about. ADT has

not interfered with his life at all.

It might also have to do with attitude. One guy is a biker who

rides 30 miles a day up and down hills. He loses some of his

strength, gives up, and spends his time watching TV and feeling

depressed. The other guy is also a biker doing the same amount

of riding. He loses some of his strength so he picks out a

different course with fewer hills and maybe fewer miles, or he

substitutes hiking for biking, and he enjoys himself just as

much. This sounds like what has done.

My own view of ADT is as follows:

First, determine whether ADT will extend your life and/or

alleviate symptoms. If it will, you have a _prima facie_ reason

to go on ADT. Try it. Get the injection.

Then do everything you can maintain a high quality of life. This

may mean:

Exercising more or less than you did in the past - keeping

the level of exercise as high as you can reasonably sustain,

but not higher.

Eating a reasonable diet. Not allowing yourself to gain

weight.

Getting a little extra sleep each night, if needed.

Making the effort to sustain some kind of a sex life, if you

had a good one before - even if it's mainly to satisfy your

partner.

Changing your lifestyle, if needed. If there's something you

loved to do that you can no longer do, then find something

else you love to do that you can do. Focus on that.

Seeking medical help if needed for hot flushes or weakening

bones. Personally, I would not seek such help unless I was

sure there was a problem.

Only if all of those failed and I was very unhappy would I

consider trading off life extension in order to get off ADT.

Alan

[Guest guest]

Hi AlanThanks for another great post!Because of your posts, especially the two that I have commented on, my thinking is starting to change.I have been quietly with this group for about seven or eight years, and thank God, because I've often wondered what I would have done without the fantastic advise and knowledge I have gained by reading the understanding and wise posts from people like you.I do know that I would probably not be writing this post.Thanks againBOB G

El Horizonte wrote:

....

> I would rather have 3 years of life with the status quo than 5,

> 6, or 7 years as someone without a sexual appetite.

....

I understand that point of view and I would support you in making

such a choice. It's your right and it may be right for you.

There's nobody other than you who can say, one way or the other.

But having said that, I'd also like to say that I believe that

there are a dozen, or a hundred, or a thousand ways to lead a

happy and satisfying life. You've explored some of them and,

apparently, been very successful. It sounds like you've been

very happy and very satisfied with the choices you've made and

the life you have led.

That's great. Many people cannot say as much.

Still, I would like to submit to you that you are a very

resourceful and open minded person. You might be surprised at

all of the ways that are open to you to be happy and satisfied.

There are many realms of experience out there waiting for you and

some of them may be every bit as fine as the experience you've

had already. So I would think twice or three or four times about

turning down ADT if that's what the best medical advice

prescribes for you. Turning it down might indeed be the best

choice for you. But, in spite of what you might think now, it

might not.

I have wondered what I would do if I were crippled and had to

look forward to a life in a wheelchair, in constant pain, and

someone handed me a bottle of pills that would enable me to end

it all.

I think I would like having those pills. I think I would get

great comfort from knowing that my future was in my hands. But

then I think I would put the bottle in my pocket. I'd think,

"Well, I can take those pills tomorrow, but first let me see if I

can spend a little time with my wife, or have a chat with one of

my friends, or my kids, or my granddaughter. Let me listen to

some Mozart again before I swallow the pills. Let me listen to

some blues guitar. I can take the pills, but first I think I'll

try to read some of the books by my favorite authors that I never

got to. First let me see the Woody and Steve movies

that I missed. I can take the pills, but before I do that, let

me check the prostate cancer newsgroup and see if there's some

poor soul in trouble that I could help."

I don't know for sure what I would do, and I do know for sure

that I'd have a lot of bad days and nights. But I'm thinking

that, just maybe, some long years could go by without me taking

those pills.

Life is full of pain and frustration, but it's still pretty sweet

too.

Alan

[Guest guest]

THANK YOU LARRY...and I feel the exact same way. If initiated...I can take a little blue guy and get some response...but no libido at all. AND...it did not take long to live with the fact..that is not

an important part of this stage of life. SOOO HAPPY TO FIND SOMEONE who agrees. It was JUST NOT WORTH all the stress the ED problems werre causing...and I basically said UCK IT...I just won't worry about it!

Subject: RE: Re: PSA is downTo: ProstateCancerSupport Date: Sunday, August 8, 2010, 1:38 AM

Alan, thank you for posting such an eloquent reply. I was trying to word an good reply about the effects of ADT but couldn’t word it in such a way without sounding rude. As for me the cancer itself gave me the ED that allowed an active sex life so the ADT didn’t change things much. I can still have fun with my partner though. I may not initiate it but in respect for my partner I put forth the effort. In the early stages of my diagnosis I was like really concerned about my loss of “masculinity†but I have since learned that there is a lot more to life than just sex. Yes I would love having a more active libido but I have learned to live with it and I still am loving life.

From: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto:ProstateCan cerSupport@ yahoogroups. com] On Behalf Of Alan MeyerSent: Saturday, August 07, 2010 7:11 PMTo: ProstateCancerSuppo rtyahoogroups (DOT) comSubject: Re: [ProstateCancerSupp ort] Re: PSA is down

I'm inclined to think about the side effects of ADT in light ofa number of separable issues:1. How bad are the side effects for a particular patient?They really do seem to vary. Most men get hot flushes. Somedon't. Some get them, but they aren't too bad. Some get theminitially but find that they have gone away after some period oftime.Most men get weaker and many gain weight. Others don't, or atleast don't do so to the same degree.Most men lose their libido and their ability to have sex. Somedon't (I know that because, although I lost all my libidio, I wasstill able to have sex on ADT - though it required a lot ofpsychological work to make it happen.)2. How well can a man compensate for his side effects?From my own experience and from the reports of others, I believethat a strong program of exercise

combined with a reasonable dietcan mitigate a significant amount of the weakening, weight gain,and emotional depression, of ADT.I also found that I could overcome the destruction of my libidoby working at it.3. Are there medical interventions that can help?Some men have reported that Megace or similar drugs haveeliminated hot flashes. Some studies have indicated thatbisphosphonates can mitigate weakening of the bones.4. How much does a particular man actually _suffer_ from sideeffects?I think it's possible to find two men with the exact sameobjectively measurable side effects, one of whom reports thatthey are terrible and the other reports that they're no problemat all.This might have something to do with lifestyle. One guy is acompetitive athlete with an active sex life who finds that bothhave gone downhill. He's very upset. The other guy has noathletic or

sexual life and gets his kicks playing the piano andreading books. He wonders what the fuss is all about. ADT hasnot interfered with his life at all.It might also have to do with attitude. One guy is a biker whorides 30 miles a day up and down hills. He loses some of hisstrength, gives up, and spends his time watching TV and feelingdepressed. The other guy is also a biker doing the same amountof riding. He loses some of his strength so he picks out adifferent course with fewer hills and maybe fewer miles, or hesubstitutes hiking for biking, and he enjoys himself just asmuch. This sounds like what has done.My own view of ADT is as follows:First, determine whether ADT will extend your life and/oralleviate symptoms. If it will, you have a _prima facie_ reasonto go on ADT. Try it. Get the injection.Then do everything you can maintain a high quality of life. Thismay

mean:Exercising more or less than you did in the past - keepingthe level of exercise as high as you can reasonably sustain,but not higher.Eating a reasonable diet. Not allowing yourself to gainweight.Getting a little extra sleep each night, if needed.Making the effort to sustain some kind of a sex life, if youhad a good one before - even if it's mainly to satisfy yourpartner.Changing your lifestyle, if needed. If there's something youloved to do that you can no longer do, then find somethingelse you love to do that you can do. Focus on that.Seeking medical help if needed for hot flushes or weakeningbones. Personally, I would not seek such help unless I wassure there was a problem.Only if all of those failed and I was very unhappy would Iconsider trading off life extension in order to get off ADT.Alan