Re: Re: Don M.---another update..

April 15, 2012

I understand your apprehension about going on ADT. It certainly doesn't sound like a good thing when you look at the side effects. Yes, they are real and no, they don't go away. Worse after being on ADT for an extended time they may not ever go away. I was in the same place as you a few years ago. I didn't have much choice and started treatment. I did get all of those common side effects but I also learned life goes on. I now feel like I will be around to see my kids graduate and get married. With the advancement in PCa research I also hope to be around to see my grand kids graduate too! I still work and am productive and really only a handful of my closer friends really know or understand what I have had to go through. To the rest I am just another guy. I know you have some tough decisions to make so focus on what you really want; to be around and watch your kids grow or jump in the sack a couple of extra times over the next couple of years. Sent from my iPhone

Alan,

Thank you very much for the information and your words of encouragement. I live just outside of Seattle, WA. However, I made contact with Dr. Snuffy Myers office and hope to see him soon but I expect that to be unlikely since his waiting list is long. I have his recent book and been watching his videos. I wasn't aware of the difference between ADT3 (triple blockade) vs a single shot of lupron. My local urologist only mentioned lupron. I will visit the links provided by Chuck so I have a better understanding. My psa is at .12 but do you think waiting an additional 3 months just to see how my psa behaves will be detrimental? I'm also thinking of having my local urologist order a complete set of scans (CAT, MRI) to see if anything can be seen. I had scans done at NIH and locally before surgery and all came back negative. I know that may be a difficult question to answer. From your experience do most men experience these side effects from ADT during the entire duration or are these just initial side effects until the body gets use to the drugs?

don

>

> ...

> > I'm in a little bit of quandary. ...

> ...

>

> Don,

>

> I'm not a doctor and not qualified to give medical advice. All I

> can do is give you some layman's opinions.

>

> The first thing I recommend is to find a good medical oncologist

> who specializes in prostate cancer. If you live in the land

> area, which I presume that you do if you were treated at NIH, you

> could inquire at NIH in Bethesda, at s Hopkins or the

> University of land Hospitals in Baltimore (Hopkins is

> especially renowned for prostate cancer), or possibly at

> town University Hospital. A very famous, and very

> expensive private prostate cancer specialist not far away is Dr.

> "Snuffy" Myers. At any of those places you are likely to

> find someone with significant experience with prostate cancer who

> is up to date with the latest research - which has been advancing

> very quickly.

>

> From everything I know about the disease, the advice that Chuck

> gave is likely to be the adivce you'd get from a specialist - to

> go on androgen deprivation therapy relatively soon. A Gleason 10

> cancer is very aggressive. Getting cancer at such a relatively

> young age also indicates aggressiveness. I would inquire about

> very aggressive treatment, i.e., ADT3, treatment with a drug such

> as Lupron to suppress testosterone production, a drug like

> bicalutamide to block the uptake of testosterone in the prostate

> cells, and a drug like Dutasteride to block conversion of

> testosterone to the more potent prostate cancer stimulator

> dihydrotestosterone. Recently, some patients have even tried a

> combination of chemotherapy and ADT. Some seem to have gotten a

> pretty complete remission - though it's too early to tell how

> long it will last. There are some trials underway on this

> approach.

>

> ADT drugs will change your life. They'll reduce your athletic

> ability, take away some of your stamina, and destroy your libido.

> On the other hand they won't destroy your ability to work, to

> care for and about your family, or to find joy in life. And most

> importantly, they may also suppress your cancer - possibly for

> many, many years.

>

> A number of new drugs have recently been approved for prostate

> cancer that can take up where the ADT3 drugs leave off and

> continue to extend life after the ADT3 drugs have stopped

> working. There are also a number of additional new drugs in the

> pipeline.

>

> You've been dealt a tough hand, but your low PSA indicates that

> your cancer is still very small. I think there is a good chance

> that you can suppress it and keep it from growing. I think there

> is a good chance that you'll still be here 10 years from, and

> still have a very small cancer with no symptoms. At that time I

> expect there will be new options that will help you get another

> ten years and, who knows, maybe ten or more years after that.

>

> > I'm trying to stay positive but it's hard, especially worrisome

> > I won't be around to raise my 20 month old son.

>

> I understand. I wasn't as young as you when I was diagnosed. My

> children were already grown. And yet I still had many, many

> sleepless nights and, I must admit, I was depresesed and found

> myself crying sometimes. I think I know how you must feel.

>

> Here's what I recommend:

>

> 1. Get the best medical advice that you can. I see that you've

> been doing that and it is obvious that you have the intelligence

> and resourcefulness to keep doing that.

>

> 2. Ask about aggressive treatment. I _think_ from my layman's

> point of view, that the most aggressive treatment is desirable.

> Inquire about clinical trials at NIH and visit these pages to see

> what is available:

>

> http://cancer.gov/clinicaltrials/search/results?protocolsearchid=6158092 & vers=1

>

> 3. Stay committed to athletics. I don't think you'll be able to

> run any marathons on ADT, but you will be able to do something.

> Don't let the drugs turn you into a couch potato. If you can't

> run 25 miles, maybe you can still jog 5. Maybe you can still

> ride a bike, play tennis, hike, or do something. Don't judge

> yourself a failure if you have to cut back from where you are

> now. If you can continue to engage in athletics, even at a

> reduced level, then you're a winner!

>

> 4. I suggest that you tell your friends and family everything. I

> found that it made everything easier. Tell them what's happening

> but also put them at their ease. Many of them will not know how

> to talk to you about it and so will avoid the subject for fear of

> upsetting you, and you may avoid the subject for fear of

> upsetting them or having them pity you. But open communication,

> if you can manage it, may make your life easier. It made my life

>

> easier.

>

> 5. Focus on your family. Your wife is going through a difficult

> trial along with you. Help her out. Many patients withdraw into

> their own world of fear and depression, avoiding their wives and

> the one relationship that can help them more than any other. ADT

> will destroy your desire for sex but keep doing it anyway as an

> expression of love for your wife - and you will find that both of

> you will get a great deal out of it - even if all you can do is

> oral and manual sex. Continue to offer physical warmth and love

> to your wife.

>

> 6. Stay committed to your career. I like my work and think it is

> valuable to others (I'm a computer programmer at the National

> Cancer Institute.) Initially I found it hard to focus on work.

> I was wrapped up in my own problems. But I found that by forcing

> myself to work I took my mind away from negative feelings and

> felt better about myself.

>

> I wish the very best of luck to you and your family.

>

> Alan

>

April 15, 2012

Don,

With some notable exceptions, I think most urologists really

don't understand the complex biology of prostate cancer. What

they know best is the anatomy. They learn how to cut out a

prostate and associated lymph nodes, but I bet very few of them

understand what an androgen receptor is, what the difference is

between testosterone and dihydrotestosterone, what genes,

signalling molecules, enzymes, etc. are involved in PCa, and so

on. That's the province of medical oncologists.

Even medical oncologists may not know a lot. The problem is that

there are around 300 known types of cancer and they are very

different. Furthermore, within a single type like prostate

cancer there can be great variations. A Gleason 10 cancer and a

Gleason 6 cancer have different cell structures and different

behaviors. So what you really want is a medical oncologist who

specializes in prostate cancer, if you can find one.

Since you live in Seattle, I recommend that you call the Fred

Hutchinson Center at the University of Washington in Seattle.

They are a world famous cancer research institution and there is

a very good chance of finding a doctor there who knows the

biology well, understands the different functions of the

different types of ADT drugs, and is up on the latest research.

Their general phone number is . They also run a

lot of clinical trials there.

A full list of the research and treatment institutions endorsed

by the NCI can be found here:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html

" Fred Hutch " is among those with their highest rating.

You asked about waiting three months. I don't know the answer to

that. If that's what the doctor at NIH recommended, he might be

thinking that there is an outside chance that you may have some

residual cancer but it will die off by itself, perhaps due to the

effect of the radiation. In that case, he doesn't want to put

you through the trouble of ADT. He may also think that there's

not going to be any long term difference in your outcome if you

start ADT with a PSA of 0.12 or a PSA of 0.2, or whatever it

might reach in three months. I would have to defer to his

expertise. He knows more than I do.

You asked about scanning.

I wouldn't get any scans until you know what you're going to do

with them. What will you do if they show a spot somewhere? What

will you do if they don't? And how will you know what the best

scans to request are?

Dr. Myers had scans done on some of his patients and was able to

find spots of cancer that could be radiated - leading to what

looks like a cure. But they weren't garden variety scans. He

sent the patients to a specialist in prostate cancer scanning who

used some more sophisticated technology.

So, if you go to Hutchinson or wherever, ask them about that.

You asked about the duration of ADT side effects.

To the best of my knowledge, Larry Helber was exactly right when

he said, " Yes, they are real and no, they don't go away. Worse

after being on ADT for an extended time they may not ever go

away. "

That's the bad news. But there was also good news in Larry's

posting. He went on to say that he still leads a full life.

He's not alone in that. Many men in this group have been on ADT

for years and are active, productive, family men.

I believe that, while the side effects of ADT don't go away, they

can be mitigated. Exercise is very important and very effective

in maintaining muscle tone and energy levels. Hot flashes may go

away eventually by themselves or can be reduced with a number of

different over the counter or prescription drugs.

It can even be possible to have sex on ADT. You won't want to.

You'll have trouble remembering why you were interested in women

before. But if you make the effort, perhaps just starting out

just trying to please your wife, you may well find that you can

still become aroused and have sex.

After a few months on Lupron you may not be able to run any more

marathons. But, hey, giving up marathons is a tiny price to pay

for what the drugs can do for you.

I think there are thousands of things that a man can enjoy in

life. Even if you have to give up a hundred of them, and even if

some of those were important to you, there are still far more

left. You can never run out of great things to live for and to

do. If you engage, the problem will be picking and choosing

among them, not finding something interesting and worthwhile to

do.

Alan

Re: Don M.---another update..

>

> Alan,

>

> Thank you very much for the information and your words of

> encouragement. I live just outside of Seattle, WA. However, I

> made contact with Dr. Snuffy Myers office and hope to see him

> soon but I expect that to be unlikely since his waiting list is

> long. I have his recent book and been watching his videos. I

> wasn't aware of the difference between ADT3 (triple blockade)

> vs a single shot of lupron. My local urologist only mentioned

> lupron. I will visit the links provided by Chuck so I have a

> better understanding. My psa is at .12 but do you think

> waiting an additional 3 months just to see how my psa behaves

> will be detrimental? I'm also thinking of having my local

> urologist order a complete set of scans (CAT, MRI) to see if

> anything can be seen. I had scans done at NIH and locally

> before surgery and all came back negative. I know that may be

> a difficult question to answer. From your experience do most

> men experience these side effects from ADT during the entire

> duration or are these just initial side effects until the body

> gets use to the drugs?

>

> don

>

>>

>> ...

>> > I'm in a little bit of quandary. ...

>> ...

>>

>> Don,

>>

>> I'm not a doctor and not qualified to give medical advice. All I

>> can do is give you some layman's opinions.

>>

>> The first thing I recommend is to find a good medical oncologist

>> who specializes in prostate cancer. If you live in the land

>> area, which I presume that you do if you were treated at NIH, you

>> could inquire at NIH in Bethesda, at s Hopkins or the

>> University of land Hospitals in Baltimore (Hopkins is

>> especially renowned for prostate cancer), or possibly at

>> town University Hospital. A very famous, and very

>> expensive private prostate cancer specialist not far away is Dr.

>> " Snuffy " Myers. At any of those places you are likely to

>> find someone with significant experience with prostate cancer who

>> is up to date with the latest research - which has been advancing

>> very quickly.

>>

>> From everything I know about the disease, the advice that Chuck

>> gave is likely to be the adivce you'd get from a specialist - to

>> go on androgen deprivation therapy relatively soon. A Gleason 10

>> cancer is very aggressive. Getting cancer at such a relatively

>> young age also indicates aggressiveness. I would inquire about

>> very aggressive treatment, i.e., ADT3, treatment with a drug such

>> as Lupron to suppress testosterone production, a drug like

>> bicalutamide to block the uptake of testosterone in the prostate

>> cells, and a drug like Dutasteride to block conversion of

>> testosterone to the more potent prostate cancer stimulator

>> dihydrotestosterone. Recently, some patients have even tried a

>> combination of chemotherapy and ADT. Some seem to have gotten a

>> pretty complete remission - though it's too early to tell how

>> long it will last. There are some trials underway on this

>> approach.

>>

>> ADT drugs will change your life. They'll reduce your athletic

>> ability, take away some of your stamina, and destroy your libido.

>> On the other hand they won't destroy your ability to work, to

>> care for and about your family, or to find joy in life. And most

>> importantly, they may also suppress your cancer - possibly for

>> many, many years.

>>

>> A number of new drugs have recently been approved for prostate

>> cancer that can take up where the ADT3 drugs leave off and

>> continue to extend life after the ADT3 drugs have stopped

>> working. There are also a number of additional new drugs in the

>> pipeline.

>>

>> You've been dealt a tough hand, but your low PSA indicates that

>> your cancer is still very small. I think there is a good chance

>> that you can suppress it and keep it from growing. I think there

>> is a good chance that you'll still be here 10 years from, and

>> still have a very small cancer with no symptoms. At that time I

>> expect there will be new options that will help you get another

>> ten years and, who knows, maybe ten or more years after that.

>>

>> > I'm trying to stay positive but it's hard, especially

> worrisome

>> > I won't be around to raise my 20 month old son.

>>

>> I understand. I wasn't as young as you when I was diagnosed. My

>> children were already grown. And yet I still had many, many

>> sleepless nights and, I must admit, I was depresesed and found

>> myself crying sometimes. I think I know how you must feel.

>>

>> Here's what I recommend:

>>

>> 1. Get the best medical advice that you can. I see that you've

>> been doing that and it is obvious that you have the intelligence

>> and resourcefulness to keep doing that.

>>

>> 2. Ask about aggressive treatment. I _think_ from my layman's

>> point of view, that the most aggressive treatment is desirable.

>> Inquire about clinical trials at NIH and visit these pages to see

>> what is available:

>>

>

http://cancer.gov/clinicaltrials/search/results?protocolsearchid=6158092 & vers=1

>>

>> 3. Stay committed to athletics. I don't think you'll be able to

>> run any marathons on ADT, but you will be able to do something.

>> Don't let the drugs turn you into a couch potato. If you can't

>> run 25 miles, maybe you can still jog 5. Maybe you can still

>> ride a bike, play tennis, hike, or do something. Don't judge

>> yourself a failure if you have to cut back from where you are

>> now. If you can continue to engage in athletics, even at a

>> reduced level, then you're a winner!

>>

>> 4. I suggest that you tell your friends and family everything. I

>> found that it made everything easier. Tell them what's happening

>> but also put them at their ease. Many of them will not know how

>> to talk to you about it and so will avoid the subject for fear of

>> upsetting you, and you may avoid the subject for fear of

>> upsetting them or having them pity you. But open communication,

>> if you can manage it, may make your life easier. It made my life

>>

>> easier.

>>

>> 5. Focus on your family. Your wife is going through a difficult

>> trial along with you. Help her out. Many patients withdraw into

>> their own world of fear and depression, avoiding their wives and

>> the one relationship that can help them more than any other. ADT

>> will destroy your desire for sex but keep doing it anyway as an

>> expression of love for your wife - and you will find that both of

>> you will get a great deal out of it - even if all you can do is

>> oral and manual sex. Continue to offer physical warmth and love

>> to your wife.

>>

>> 6. Stay committed to your career. I like my work and think it is

>> valuable to others (I'm a computer programmer at the National

>> Cancer Institute.) Initially I found it hard to focus on work.

>> I was wrapped up in my own problems. But I found that by forcing

>> myself to work I took my mind away from negative feelings and

>> felt better about myself.

>>

>> I wish the very best of luck to you and your family.

>>

>> Alan

April 15, 2012

Lhelber wrote:

> ... I still work and am productive and really only a handful of

> my closer friends really know or understand what I have had to

> go through. To the rest I am just another guy. ...

I'd like to add something to that. I agree with your sentiment

and will go even a little further and say that you really ARE

just another guy.

When you get right down to it, I think it turns out that many

people, maybe even most people, feel like they are somehow

different and worse than other people. Maybe it's because they

have a bad knee, or they're overweight, or they're not married,

or they're bald, or they're diabetic, or they have a big nose,

or, well, you get the idea.

We might laugh at that but the person with advanced breast cancer

or lung cancer, or any stage of pancreatic cancer might laugh at

us and wonder why we're upset about having prostate cancer.

Some people who look great don't feel great. It all depends on

what they expect and who they compare themselves to. When Lance

Armstrong became a professional bike rider and, for the first

time in his life, met men who could beat him in a bike race, he

was pretty depressed by it. And of course when he got testicular

cancer, you can imagine what he thought.

Every one of us is suffering from a terminal illness called

" life " . Every one of us has personal problems. Most of us have

some health problems. I think that having such problems doesn't

actually single us out. If anything, it makes each of us " just

another guy. "

Alan

April 15, 2012

Good stuff Alan.

My 9th year on ADT. My wife was amused by my hot flashes. She was right.