RE: Happy Update

[Guest guest]

Good luck to your husband Lynn. Others had commented on overdoing the sports until surgery has healed. It seems to me that migration of seeds is a definite risk and jogging might not be a good idea. What do others say? We had a lot of publicity in Philadelphia a couple of years ago over poor placement and follow up at a Veterans Hospital. See, http://www.medscape.com/viewarticle/706366, http://www.va.gov/oig/54/reports/VAOIG-09-02815-143.pdfRegards, T MIchael Poxon-8 weeks post Proton Beam Therapy with a third Lupron shot today. I wanted to post an update on my husband who is 65 years old. After being diagnosed 3 years ago with a 4+3 and GS of 7, he finally decided on treatment. The doctor re-biopsied and re-scanned and everything looked good. So, on Oct. 7, he had 46 Iodine 125 seeds inplanted (LDR Brachytherapy). The procedure went quicker than expected and Moffitt Cancer Center was wonderful to work with.While it is clear that he has some side effects such as urinary frequency and was initially a bit sore, things have gone amazingly well. The only medication that he is on is Flomax. He was encouraged to start walking almost immediately. On Nov. 5, he ran and and completed a 5k race and next week we are doing a 5k Turkey Trot before having the family over for Thanksgiving.Thank you all so much for your patience with my questions!Low PSAs and blessings to all.Lynn

[Guest guest]

Way to go to Lynn and her Hubby! Sounds great.... has started radiation at Datolli in Sarasota.... 2 treatments so far... no side effects yet...Vicki

I wanted to post an update on my husband who is 65 years old. After being diagnosed 3 years ago with a 4+3 and GS of 7, he finally decided on treatment. The doctor re-biopsied and re-scanned and everything looked good. So, on Oct. 7, he had 46 Iodine 125 seeds inplanted (LDR Brachytherapy). The procedure went quicker than expected and Moffitt Cancer Center was wonderful to work with.

While it is clear that he has some side effects such as urinary frequency and was initially a bit sore, things have gone amazingly well. The only medication that he is on is Flomax. He was encouraged to start walking almost immediately. On Nov. 5, he ran and and completed a 5k race and next week we are doing a 5k Turkey Trot before having the family over for Thanksgiving.

Thank you all so much for your patience with my questions!

Low PSAs and blessings to all.

Lynn

[Guest guest]

> I think you misunderstood,,my husband WAS on Zoladex,,and after

> one year his PSA had dropped,,,and after a year of being off

> them, only then, did the PSA start to climb slowly,,first to

> 0.08 then to 0.42 three months later 0.52 and the last one was

> 0.53, so now we wait and see what happenes with his next test

> in a couple of weeks says. Steve, may God rest his soul, told

> me at that when it went up to 0.52 that he may have to go back

> on the hormones. ...

Hello Sheila,

Well, I'm going to be the odd man out here and say that, so far,

it looks to me like your husband is doing okay.

Radiation does not kill all of the cancer immediately. It

damages the tumor cells to the point where they can't replicate

any more and, eventually, they die off. However the process can

take years. In my own case it took about five years before my

PSA reached its lowest point.

It is my understanding that Zoladex causes some cancer cells to

die and suppresses others, making them less biologically active.

The PSA goes down a lot under Zoladex.

If the Zoladex is withdrawn within a year, as in your husband's

case, I think it would be normal and expected for the PSA to go

up a little. It happened to me with my PSA going from

undetectable under Lupron to as high as 1.8 about a year after

the end of Lupron, before it started back down again.

The fact that his last PSA was 0.53, and has not really gone up

since the one before that (it's hard to consider a " rise " from

0.52 to 0.53 as a real rise), is a very encouraging sign. He may

still have a dangerous cancer. You never know for sure. But the

PSA readings so far don't seem to me to prove that the treatment

failed. I'm not a doctor and not qualified to give medical

opinions, but to my layman's eye, waiting to see what happens

seems reasonable. Even if the PSA goes up higher, if it were me

I wouldn't rush into further treatment unless it keeps going up

and going up and going up. Given my own experience of having it

go up to 1.8 before it went down, I'd now be inclined to wait at

least until 2.0 and maybe 4.0 before getting more treatment.

Finally, I'd like to make a comment about the problem of hormone

therapy causing men to withdraw from their wives and become cold

to them.

In my inexpert opinion, the hormone therapy does not directly

cause this. It is an indirect effect of depression and a sense

of loss that men experience. There are several causes of this.

1. Cancer

First of all, being diagnosed and treated for cancer will depress

the hell out of anybody. I think it is not uncommon for cancer

patients to withdraw into themselves, become self-absorbed, and

lose interest in the rest of the people in the world. It looks

to them like everybody else can live and plan for the future but

all they can do is slowly die.

2. Loss of interest in sex.

A man's relationship to his wife or partner changes on Lupron or

Zoladex. One of his big interests is gone. He has to

re-evaluate his relationship. For some men this can take a lot

of time and they may or may not be able to work things out for

themselves. It helps a lot, I think, if they can talk about it.

3. Loss of a sense of manhood.

When a man loses his ability to have sex he feels different and

worse about himself. He walks down the street and sees other men

and feels isolated, alienated, and diminished. All those guys on

the street can do something that he can't do. All of them can

attract and satisfy women (or men for guys inclined that way),

something that men have wanted to do since they were 12 years

old, but which he imagines that he now can't do. He feels like a

guy in a wheelchair watching other guys play baseball and

listening to the crowd cheer the players, and knowing that he can

never play again.

In actual fact, some of those guys on the street have the same

problem he has, but he doesn't know that. He feels like he's

different from and inferior to all other men.

In that state, a man may even resent his wife. She can do

something (enjoy sex) that he can't do. She might want something

from him that he believes he cannot provide. He could suffer all

kinds of delusions about that and project blame onto others -

especially his wife - who is living a normal life right there in

front of him, while he can't.

These problems are not easy to overcome. They require an effort

of will. They require that a man think deeply about the problems

and, most importantly, discuss them with his wife.

So for all of the wives facing this problem, my best advice is to

try to get their husbands to talk about it. It's hard. Talking

about it will probably make them feel threatened. But I

personally think it's the best thing for their marriages and the

best thing for them. I think a lot of men will find that the

women who have lived with them for 30 or 40 years are more

understanding and supportive than they realize and can help them

through the problems.

Alan

[Guest guest]

Thanks, Alan. I was going to reply to Sheila but you put it so much better. I’ve had six months of Triptorelin this year finishing in September. My PSA dropped from 10.2 to 0.1 but the side-effects (sudden sweats and complete loss of libido) were not great and that’s only the ones I’m aware of. Hormone deprivation isn’t a cure for prostate cancer although it can hold it off for a long time if you’re lucky. And being on ADT isn’t great for the rest of your body so intermittent therapy seems like a good compromise. I have yet to find an oncologist in the UK who goes along with the triple androgen blockade which Chuck is so convinced about. Looking for more answers I changed consultants recently to one of the top UK medical oncologists at Bart’s Hospital in London. He explained the approach they take in great detail. Intermittent therapy is not an improvement on continuous ADT but it is no worse either. On the other hand it places your body under less stress so in the end it may avoid you having a heart attack or a stroke before the PCa has time to get you. The scheme we are following at present is to stop the ADT until the PSA rises to between 10 and 20 and then recommence until it is down to an insignificant level again before recommencing the cycle. We keep doing that until it doesn’t work any more and then try something else. It remains to be seen whether this works for me – everyone is different so there’s no way of knowing. I’ve had my bone density checked and it’s fine. Meanwhile I feel great and my business is beginning to flourish. In fact life is pretty good. Bob From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan MeyerSent: 17 November 2011 16:28To: ProstateCancerSupport Subject: Re: Happy Update > I think you misunderstood,,my husband WAS on Zoladex,,and after> one year his PSA had dropped,,,and after a year of being off> them, only then, did the PSA start to climb slowly,,first to> 0.08 then to 0.42 three months later 0.52 and the last one was> 0.53, so now we wait and see what happenes with his next test> in a couple of weeks says. Steve, may God rest his soul, told> me at that when it went up to 0.52 that he may have to go back> on the hormones. ...Hello Sheila,Well, I'm going to be the odd man out here and say that, so far,it looks to me like your husband is doing okay.Radiation does not kill all of the cancer immediately. Itdamages the tumor cells to the point where they can't replicateany more and, eventually, they die off. However the process cantake years. In my own case it took about five years before myPSA reached its lowest point.It is my understanding that Zoladex causes some cancer cells todie and suppresses others, making them less biologically active.The PSA goes down a lot under Zoladex.If the Zoladex is withdrawn within a year, as in your husband'scase, I think it would be normal and expected for the PSA to goup a little. It happened to me with my PSA going fromundetectable under Lupron to as high as 1.8 about a year afterthe end of Lupron, before it started back down again.The fact that his last PSA was 0.53, and has not really gone upsince the one before that (it's hard to consider a " rise " from0.52 to 0.53 as a real rise), is a very encouraging sign. He maystill have a dangerous cancer. You never know for sure. But thePSA readings so far don't seem to me to prove that the treatmentfailed. I'm not a doctor and not qualified to give medicalopinions, but to my layman's eye, waiting to see what happensseems reasonable. Even if the PSA goes up higher, if it were meI wouldn't rush into further treatment unless it keeps going upand going up and going up. Given my own experience of having itgo up to 1.8 before it went down, I'd now be inclined to wait atleast until 2.0 and maybe 4.0 before getting more treatment.Finally, I'd like to make a comment about the problem of hormonetherapy causing men to withdraw from their wives and become coldto them.In my inexpert opinion, the hormone therapy does not directlycause this. It is an indirect effect of depression and a senseof loss that men experience. There are several causes of this.1. CancerFirst of all, being diagnosed and treated for cancer will depressthe hell out of anybody. I think it is not uncommon for cancerpatients to withdraw into themselves, become self-absorbed, andlose interest in the rest of the people in the world. It looksto them like everybody else can live and plan for the future butall they can do is slowly die.2. Loss of interest in sex.A man's relationship to his wife or partner changes on Lupron orZoladex. One of his big interests is gone. He has tore-evaluate his relationship. For some men this can take a lotof time and they may or may not be able to work things out forthemselves. It helps a lot, I think, if they can talk about it.3. Loss of a sense of manhood.When a man loses his ability to have sex he feels different andworse about himself. He walks down the street and sees other menand feels isolated, alienated, and diminished. All those guys onthe street can do something that he can't do. All of them canattract and satisfy women (or men for guys inclined that way),something that men have wanted to do since they were 12 yearsold, but which he imagines that he now can't do. He feels like aguy in a wheelchair watching other guys play baseball andlistening to the crowd cheer the players, and knowing that he cannever play again.In actual fact, some of those guys on the street have the sameproblem he has, but he doesn't know that. He feels like he'sdifferent from and inferior to all other men.In that state, a man may even resent his wife. She can dosomething (enjoy sex) that he can't do. She might want somethingfrom him that he believes he cannot provide. He could suffer allkinds of delusions about that and project blame onto others -especially his wife - who is living a normal life right there infront of him, while he can't.These problems are not easy to overcome. They require an effortof will. They require that a man think deeply about the problemsand, most importantly, discuss them with his wife.So for all of the wives facing this problem, my best advice is totry to get their husbands to talk about it. It's hard. Talkingabout it will probably make them feel threatened. But Ipersonally think it's the best thing for their marriages and thebest thing for them. I think a lot of men will find that thewomen who have lived with them for 30 or 40 years are moreunderstanding and supportive than they realize and can help themthrough the problems.Alan

[Guest guest]

> ... The scheme we are following at present is to stop the ADT

> until the PSA rises to between 10 and 20 and then recommence

> until it is down to an insignificant level again before

> recommencing the cycle. We keep doing that until it doesn’t

> work any more and then try something else. ...

I think that's a good thing to try, but one question I would ask

of the oncologist is what to do in the " off " periods.

I think I would definitely try all of the diet, exercise and

supplement recommendations that have been offered for prostate

cancer. That probably means something like the " Mediterranean "

diet, limiting fat and calories and exercising well.

As for supplements, I am aware of claims having been made for

pomegranate, lycopene, curcumin, resveratrol, and vitamin D. One

study (paid for by the pomegranate growers of course), showed a

significant decrease in PSA growth rate while taking pomegranate

juice. One study claimed an increase in doubling time from 12

months to 18 months with pomegranate alone:

http://www.medpagetoday.com/MeetingCoverage/ASCOGU/24941

Another study claimed an even larger increase.

The evidence for the supplements is not at as high a level as

we'd like but, if they're cheap and thought to be otherwise

harmless, I don't see why one wouldn't take them.

Another possiblity is using " light " ADT in the off periods. This

might include dutasteride or even low doses of bicalutamide or a

similar drug, or low doses of estradio.

The goal of all this is not to cure the cancer, it won't do that,

but to decrease its growth and increase the time between " on "

periods when you are taking heavy drugs like Triptorelin. The

results can be significant.

If I've done the math right, the differences look like this:

Doubling time Years to go from 1-10

-------------- ---------------------

12 months 3.32

18 months 5.68

24 months 6.64

Assuming you have a pattern of 3 " on " periods of one year each

followed by 3 " off " periods, your time to hormone refractory

cancer is:

Doubling time Years to go from 1-10

-------------- ---------------------

12 months 3 + (3 * 3.32) = 12.96

18 months 3 + (3 * 5.68) = 20.04

24 months 3 + (3 * 6.64) = 22.92

Not only do you live longer, more of those years are non-ADT

years.

Of course your doubling time may be shorter than 12 months. Many

men have shorter times. But you still get significant

improvements if you can increase the doubling time with simple

and relatively non-toxic treatments.

Best of luck.

Alan

[Guest guest]

> One study claimed an increase in doubling time from 12 months

> to 18 months with pomegranate alone:

>

> http://www.medpagetoday.com/MeetingCoverage/ASCOGU/24941

Here's some more about the study. There were two groups of men.

One group took one pomegranate extract pill per day. The other

group took 3 pills. There was no control group with no pills.

We might expect that the improvement between 0 pills and 3 pills

would be even greater than from 1 to 3, though we have no data to

confirm that.

Of course everyone's mileage varied. Some men had their doubling

time get worse instead of better. But if I'm reading it right,

the number of men who got worse was greater in the low dose group

than the high dose group. And on the other side, some men

actually had their PSA decline over the term of the study.

I'm sure that if we had a real control group with no pomegranate,

we'd see some of those men have an accelerating doubling time as

well.

It's also noted in the article that we don't know for sure that

the average decrease in PSA doubling time really means a longer

survival in the end. But what can you do? If it were me, I'd

play what I thought were the best odds, which would be to take

the course of action that holds down my PSA the best.

Some day in the future, people will read these ancient postings

on alt.support.cancer.prostate and shake their heads. " Those

poor ignorant people, " they'll think, " they didn't know that if

you just get one flibbergibbet pill your cancer would be

completely cured. "

I hope the scientists figure out how to make flibbergibbet real

soon :^)

Alan

[Guest guest]

> ... His somewhat smug, know-it-all unconcerned replay was " well, it’s

> working isn’t it? " (Ignorance may be bliss when you are not

> the recipient of that ignorance). I left him and went to a

> Medical Oncologist I had come to respect ...

I'm amazed at how many " experts " at prostate cancer don't seem to

know about any of the subtler, and even not so subtle, issues in

treating it.

I watched a video by Dr. Myers commenting on the new guidelines

recommending against PSA screening. He said that he believed

that we could reduce prostate cancer deaths to only around 3,000

per year in this country if every doctor treating it followed

best practices. He thought all men should be screened, men who

didn't need treatment should not be treated, and men who did need

treatment should be treated correctly. It made sense to me.

The urologists and oncologists who don't follow best practices,

of course, don't even know that they're ignorant of them. And of

course most patients don't either. It's very upsetting to see

how many men suffer and die when they don't need to.

> ... I consider the Avodart " maintenance " while off the other

> medications ...

Did you use any other maintenance treatments? For example the

supplements (pomegranate, lycopene, resveratrol, curcumin,

Vitamin D?), or other hormone therapies like low dose Casodex?

> To continue the story, with the return at the end of this past

> September to bicalutamide (the generic of Casodex) at triple

> strength (150mg daily) and Lupron to the continuing Avodart, my

> PSA continued a very slow but constant elevation with only a

> brief drop when the Lupron was added and bicalutamide stopped.

> It was obvious HRPC (hormone refractory PC) was occurring. My

> MedOnc contacted my health insurer and obtained approval for

> Zytiga (abiraterone acetate) coverage.

Do you have any opinions of the other " second line " hormone

therapies? I'm thinking for example of estradiol, DES (though

its activity is probably the same as estradiol), or ketoconazole?

Others I've heard of include Revlimid and Leukine, though I know

less about them.

Do you have specific plans for what to do if and when the Zytiga

stops working?

It's my impression that there are perhaps a dozen drugs with

demonstrated activity against PCa, maybe more. When one of them

fails I think a really good med onc should try every single one

of the others until he either finds one that works or he's gone

through all of the possibilities. He should probably try them in

the order of their toxicity. Try the least toxic first. If it

works, stay on it until it fails, then try the next least toxic,

and so on, until there's nothing left to try. Probably the last

one in the chain is docetaxel.

An alternative might be to try a combination. The disadvantage

of that is that you don't know whether all of the benefit

actually came from just one of the drugs and the others did

nothing. The advantage is that you might get synergistic

effects.

I think most " specialists " don't even know the names of most of

these drugs and have no idea that there are any choices beyond

Lupron, Casodex, and docetaxel. Of those who have heard of them,

many have no idea about proper dosing, proper testing, drug

interactions, side effects, or proper follow on care.

This is not just true of prostate cancer. It's true of all of

the cancers and a lot of other diseases besides. Lance Armstrong

would probably not be alive today, and certainly wouldn't have

been able to return to professional athletics, if he hadn't

decided to throw out his oncologist and find a better one to

treat his testicular cancer.

I don't know the answer to this problem but I'm more and more

recommending that people only seek treatment either from well

known specialists, or from the teaching and research hospitals

designated as " cancer centers " by the National Cancer Institute.

My own treatment was in a clinical trial at NCI and I can say

that most of the doctors I talked to there were reading, and able

to quote, the latest research. They weren't famous doctors, but

they were themselves research scientists and they spent a lot of

time studying and keeping up.

Best of luck with you Zytiga treatment. I believe that the whole

prostate cancer community is behind you and wishing you well. We

need you to stay with us!

Alan