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Old 12-16-2010, 12:38 PM   #1
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Smile Eleven years ago today

Eleven years ago today was my first full day as an "official" prostate cancer survivor. I had received my biopsy result the preceding afternoon, and the results were not good: following that PSA (first ever) of 113.6 that triggered this journey, the biopsy revealed all cores were positive, most with 100% cancer, and with a Gleason of 7 (later upgraded by an expert from 3+4 to 4+3=7).

Back then a great many doctors did not know good ways of treating advanced cancer (many still don't, especially urologists). Within a month I had obtained second opinions from respected doctors at the City of Hope (outside LA in Duarte) and at Johns Hopkins; both urologists answered my request for a prognosis, under best treatment, with survival estimates of five years: three good years and two declining years.

Surgery, which in ignorance of the dire challenges in my case I had requested, was bluntly ruled out , and the odds of success for radiation were pretty low . I had started Lupron (December 20, 1999) to try to slow the cancer down and as preparation for whatever treatment would follow.

I look back on where I've been and where I am now with amazement and profound gratitude! In a gradual education process, I elected to rely on triple hormonal therapy alone, supported with lifestyle tactics (nutrition/diet/supplements, exercise, and stress reduction) and a bone density rebuilding program. I have now completed two full cycles of triple blockade, achieving a nadir of <0.01 both times before taking a vacation and discontinuing the heavy duty drugs (Lupron and Casodex), and achieving more time off-therapy than on. I achieved a nadir of .02 for this last (third) cycle, and I'm now starting my nineth month off therapy; based on the slow rate at which my PSA is climbing, I should be on vacation for quite a number of additional months.

As on the previous two cycles, side effects were essentially gone at about the three month point, and I now have virtually the same high quality of life that I enjoyed in the years prior to being diagnosed. That prospect too would have been unbelievable to me eleven years ago. (My overall health is in better shape than it was eleven years ago, and even my bone mineral density has returned to the normal level.)

I am especially grateful to the courageous, visionary, pioneering medical oncologists who have blazed the trail for effective and tolerable hormonal therapy.

We see a lot of bad news on this board, which is natural, but we also see some good news, and today I want to add to that.

Here's to low PSAs for us all!

Take care all,

Jim

 
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Old 12-16-2010, 04:00 PM   #2
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Re: Eleven years ago today

Jim,
Congratulations and keep it going. You are not only an insperation to us but also one of the leaders of solid information and hope for all including us 9'S.

Fight On.

 
Old 12-16-2010, 06:58 PM   #3
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Re: Eleven years ago today

Congratulations, Jim. You're setting new records every day. Ever thought about writing a book yourself? I know there are a lot of people who would be interested in reading it.
- Allen

 
Old 12-16-2010, 07:44 PM   #4
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Re: Eleven years ago today

Well done Jim, I would wish you good luck but you dont need it as you are making your own. Agree with TA re a book on your experiences.
Good luck anyway, some more wont hurt.
david

 
Old 12-16-2010, 10:21 PM   #5
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Re: Eleven years ago today

Jim, your story is truly an inspiration to all of us who need that kind of hope. Our GP told us about an 84 year old man who stopped responding to hormone therapy after only 3 years. Another doctor told us that everybody responds to hormone therapy differently and I guess that has to do with how much hormone refractory cancer is present. Have you learned anything about this? Why do some respond better and longer to hormone therapy?

In any event, as you know, Irv has had the surgery and is dealing with the side effects. Also, because of his stage T3B, it will, most likely, be recommended that he goes through adjuvant radiation therapy. If I only had a crystal ball and knew that Irv would respond as well as you to the hormone therapy, it really sounds like a good alternative. Unfortunately, we never know what tomorrow brings and we all hope we're doing the right thing. For Irv, at 51, the goal is to try to cure him, despite the apparent odds. Hopefully he'll keep up with his positive attitude. That can't hurt.

Congratulations on your successes and may you experience 11 more successful years...and then some. Keep kicking *** with that prostate cancer monster.

Regards, Rhonda

 
Old 12-17-2010, 04:56 AM   #6
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Re: Eleven years ago today

Hi Jim,
Congratulations on your anniversary. You really have done it the right way against all odds. Many of us got inspiration in your case. Hope you get many more on/off periods to break all barriers of diagnosis.
Merry Christmas.
Baptista

 
Old 12-17-2010, 09:20 AM   #7
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Re: Eleven years ago today

Hi Jim,

That's great news! I guess you showed those doctors that only gave you five years.

I hope you continue to do great things with hormone therapy. It's an inspiration to all of us that are looking at the possibility of hormone therapy sometime in the future.

If and when I have to go on hormone therapy, I would rather have you treating me than my current oncologist. How's that for having confidence in someone?

Have a great Holiday season!!!

Lionel

 
Old 12-17-2010, 10:22 AM   #8
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Re: Eleven years ago today

Jim: Great news, Hope you have continued success. I think everyone on this board would agree that you are a world of knowledge to us all. Hope you have meny more months of vacation. Have a Merry Christmas & A Happy Healthy New Year. Rich

 
Old 12-17-2010, 04:12 PM   #9
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Re: Eleven years ago today

Hi Allen and everyone participating in this thread,

Thank you for your kind and encouraging responses! I'll do my best to keep it up!

Allen, you wrote in post #3:


Quote:
Originally Posted by Tall Allen View Post
Congratulations, Jim. You're setting new records every day. Ever thought about writing a book yourself? I know there are a lot of people who would be interested in reading it.
- Allen
I have thought a little about writing a book, but there are several great books already out there, and I'm not sure that there would be that many book buyers for a book about becoming empowered as a prostate cancer survivor while finding lots of flaws in the system as well as wonderful but nearly hidden gems.

Maybe someday.

Whatever happens, thanks for your encouragement!

 
Old 12-17-2010, 05:46 PM   #10
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Thumbs up Re: Eleven years ago today

Hi Rhonda,

I'm responding to your post #5 about the prospects for hormonal blockade. As usual, I'll insert some thought in green in an excerpt from what you said. I'll repeat my thanks to you and all who have expressed such kind and warm thoughts.

Quote:
Originally Posted by srhonda61 View Post
... Our GP told us about an 84 year old man who stopped responding to hormone therapy after only 3 years. Another doctor told us that everybody responds to hormone therapy differently and I guess that has to do with how much hormone refractory cancer is present. Have you learned anything about this? Why do some respond better and longer to hormone therapy?
So many doctors have a grossly inadequate understanding of hormonal therapy, and it's not limited just to general practitioners, who have a fairly good excuse that they are not specialists who should no better. Even highly respected prostate cancer surgeons, like the legendary pioneer Dr. Patrick Walsh of Johns Hopkins does not really have a sound grasp of hormonal therapy.

The response time, as I see it, depends mostly on the nature of the cancer at the time of hormonal therapy, the kind of hormonal therapy, and whether it is soundly delivered. (Side effects depend on the person, on the nature of the hormonal therapy, and on the use of countermeasures.) Unfortunately, hormonal therapy often does not work well in men with widespread bone metastases, especially if they are painful; it seems to work somewhat better in men with widespread bone mets without pain; and it appears to work with increasing effectiveness as it is applied to earlier stage disease - few bone mets, no bone mets, and no mets at all. It is quite possible that that 84 year old man your GP mentioned was a patient with very advanced disease. However, it is really uninformative, misleading and confusing for a doctor to tell you something like that without identifying the stage of the disease and the kind of blockade. I'll give the GP a pass as we can't really expect him to know the ins and outs of hormonal therapy.

As to the kind of hormonal therapy, accumulating evidence suggests strongly that combined therapy is going to be superior to single therapy for many of us. Often, these days, that means an LHRH-agonist (such as Lupron or Zoladex, the latter scheduled to go generic shortly, or surgical castration) plus an antiandrogen such as bicalutamide (now thankfully generic so that the price has plunged from what we used to pay for Casodex). However, many doctors are still prescribing only one drug. I'm convinced, partly based on my own dramatic results, that adding a third drug - a 5-alpha reductase inhibitor, either finasteride (generic) or Avodart, will be the straw that breaks the camel's back for many of our cancers. This triple blockade combination first halts the production of testosterone produced by the testes, then muscles out most of the remaining testosterone (produced indirectly using products of the adrenal glands) from docking to the androgen receptors on the cancer cells, also blocks androgen receptors so that docking of DHT is reduced, and finally sharply reduces the conversion of any remaining testosterone to the far more dangerous DHT. (The Primer, Beating Prostate Cancer: Hormonal Therapy & Diet, and Invasion of the Prostate Snatchers all do a good job explaining how all this works.)

From participation in these electronic discussions and from listening to talks by doctors, I've learned that many doctors do not understand that it is important to deal with DHT as well as testosterone. So many doctors really do not have a clue! You probably will be able to assess a doctor's level of savvy about this pretty easily: just ask him whether DHT is important in hormonal therapy. If he doesn't confidently assert its importance, he isn't very savvy about hormonal therapy.

Sound administration and management of hormonal therapy are also vital. The experts I follow advise that about 10% of men on hormonal therapy will not get much benefit because the therapy is poorly administered or because their own biology eliminates the dose too rapidly and this is not effectively countered. The key to success here, if there is any delay in driving the PSA rapidly down to <0.05 (may take a few months; Dr. Myers would like to see the PSA driven to <0.01), is monitoring at least the testosterone level, and it's wise to also have the DHT level monitored. (Some other hormones, LH for example, may also be monitored.) If testosterone is 20 or higher, that's a sign that there may be a problem if the PSA is not extremely low. (Fifty used to be accepted as the success cut-off, but accumulating evidence has many experts convinced the level needs to be around 20 or lower.) I don't recall the desired figure for DHT, but it's in the teens or lower. So many doctors neglect to monitor either testosterone or DHT, nor do they do an ultrasensitive test that will show whether there is a problem! Conventional PSA tests that measure to <.1 are simply blind to the key evidence, which lies below that level. I heard one leading expert say recently that he thinks it's "criminally negligent" for doctors not to monitor patients with ultrasensitive tests. I recently heard one of his fellow-medical oncologists, who treats many prostate cancer patients locally, say that he does not see the value of using ultrasensitive tests. (He strikes me as a kind and decent man, probably with some good talents as a doctor, but you won't see me in his office!)

Problems in administration include improper mixing of ingredients (not hard, but needs to be done right - you can read the directions at the US Government's FDA site), improper storage (temperature), injection of the "bolus" into fat instead of muscle, and having the coil (for Zoladex) work its way out of the skin. When I get an injection from someone new to me, I tactfully talk to them first to make sure they know what they are doing, and I try to discreetly watch to make sure the Lupron is being pre-mixed correctly.

I'm repeating the second part of what you wrote to give it special attention:


Quote:
Another doctor told us that everybody responds to hormone therapy differently and I guess that has to do with how much hormone refractory cancer is present.
There are differences in how each of us responds, but that thought should be in the context of broad commonality of success for soundly used hormonal therapy. The physicians who have pioneered advances in this therapy confidently expect that a large majority of us will achieve a drop in PSA to at least below 0.05. In fact they use failure to achieve that, under triple blockade, as a key diagnostic clue indicating unusually aggressive disease that requires a switch in tactics or additional tactics. (Meanwhile their unenlightened colleagues blissfully let prostate cancer in such patients advance unchecked.)

Those leading expert doctors fully expect that most of us, who achieve the desired drop in PSA, should respond to hormonal blockade for either around ten to eleven years or even indefinitely long. (Meanwhile their unenlightened colleagues are scaring their patients by telling them that hormonal therapy will only work for about a year and a half to three years.) The experts will inform us that second and third line hormonal therapy, which is used should the first line stop controlling the cancer adequately, will work for additional years. (Meanwhile, many of their unenlightened colleagues will not even be aware of second line therapy, or they will know only about obsolete forms of such therapy.)

Yes, ultimately the extent and growth of hormone refractory prostate cancer partly determines how we will do, but that is far from the main theme in the story for many years for most of us. I can't help thinking that if I can do well, considering my awful situation at the start, then a great many of us with much less advanced cancer should do as well or better. While I'm now at the eleven year point, I should be at or near the twelve year point when I need to go back on therapy, and I won't be refractory at that point. Based on my success this time, achieving a nadir of 0.02, I have a good shot at responding well again, and that would likely put me around the fifteen year point, still on first line hormonal therapy. Moreover, every year progress is being made toward making refractory prostate cancer again responsive to hormonal therapy. That has already happened for some patients with some drugs and drug combinations. The trick is to prove approaches that work for most patients.



Quote:
In any event, as you know, Irv has had the surgery and is dealing with the side effects. Also, because of his stage T3B, it will, most likely, be recommended that he goes through adjuvant radiation therapy.
More and more, early radiation is recommended for men with some risky features after prostatectomy. Until this week, I thought it was safe (and standard) to wait until the PSA neared 1.0, but being sure to get the radiation before that. I just learned that "the earlier the better" may be best. I'm thinking it's still wise to wait until the patient recovers from the prostatectomy.

Quote:
If I only had a crystal ball and knew that Irv would respond as well as you to the hormone therapy, it really sounds like a good alternative.
My hunch is that well-done hormonal therapy, especially intermittent triple blockade, is a sound option. However, I doubt that research can support that view at the moment. Adjuvant radiation, probably with a couple of years of hormonal therapy in support, is probably the standard as of now and a good choice.

Quote:
Unfortunately, we never know what tomorrow brings and we all hope we're doing the right thing. For Irv, at 51, the goal is to try to cure him, despite the apparent odds. Hopefully he'll keep up with his positive attitude. That can't hurt.

Congratulations on your successes and may you experience 11 more successful years...and then some. Keep kicking *** with that prostate cancer monster.

Regards, Rhonda
All we can do is do the best we can with what we know at the time. My feeling is that your husband still has a decent shot at a cure, and short of that, at a recurrence that is mild enough not to cut life short or create a heavy burden.

Warm regard to you and Irv,

Jim

 
Old 12-18-2010, 01:48 AM   #11
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Re: Eleven years ago today

Jim, thank you for another well written, informative and helpful response. I'm feeling a little overwhelmed with all of this information. It's a lot to take in. My big question is, how do I know if we have the best oncologists who are aware of all of this?

I'm rather upset now, after reading some resources, that Irv's penile rehab hasn't started. I would have thought that he would have been on the PDE5 medications already. I feel like, I could read all of this stuff and learn to understand it, but who is going to change their plan of action because of something I say? Is Canada known to provide treatment that's as good as the states? The psychologist we went to see said that Princess Margaret is one of the best for this.

Can any of you recommend the best oncologists in Toronto...particularly for radiation and hormone therapy? I need a doctor who is as well informed as you, Jim. I'd like to be able to take you with us to every appointment. I wish Irv would research like you do. He leaves it to me and I'm starting to feel like I just can't absorb anymore. I want Irv to enjoy every advantage with the best treatment of his cancer but I don't know how to know if he's getting that...and if he isn't, how to make sure he does.

I doubt decisions we've made together...like the nerve grafting. I'm starting to think that was an unneccessary waste of time and that Dr. Klotz was right and we should have stuck to our original plan. I need help understanding and absorbing this. Right now, I'm feeling a little lost.

I don't even know how to get Dr. Fleshner to just slow down and answer our questions in a concise manner. He seems to be in rush all the time. Okay...I'm rambling...tired...feel like I'm spinning my wheels...staying up late at night reading about prostate cancer and feeling like I'm getting no further ahead to make sure that we can find Irv the best treatment. How did you get to the point you're at, Jim? I'm starting to read your material and I just can't process it anymore. I'm hoping for words of wisdom.

Regards, Rhonda

Last edited by honda50; 12-18-2010 at 01:48 AM.

 
Old 12-18-2010, 02:06 AM   #12
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Re: Eleven years ago today

Oh, one more thing....It seems that the medical expertise with hormone therapy isn't as advanced here, or runs on a different philosophy. Dr. Fleshner said that he doesn't want to start hormone therapy, not until we have to...so not as part of the adjuvant therapy. It seems that the belief is that the side effects are horrible and that it may only be effective for a few years. I don't know if I'm misunderstanding but, for me, you are living proof that you can live with hormone therapy. It almost seems that the doctors here just don't have the same expertise with combination therapies and drugs to counteract the side effects.

Jim, what have you heard about Princess Margaret Hospital? Anybody out there have recommendations for certain experts I should try to get Irv to see? It's 5 am here...Haven't gone to sleep yet...The mind is always racing....

Regards, Rhonda

 
Old 12-18-2010, 05:20 AM   #13
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Re: Eleven years ago today

Hi Rhonda,

Before this is over, you will be an expert! (Probably not the field you would have chosen to become extra knowledgeable.) I'll put some thoughts in green, and I hope you get some replies from other board participants who live in the Toronto area.


Quote:
Originally Posted by srhonda61 View Post
Oh, one more thing....It seems that the medical expertise with hormone therapy isn't as advanced here, or runs on a different philosophy. Dr. Fleshner said that he doesn't want to start hormone therapy, not until we have to...so not as part of the adjuvant therapy.
Living in Canada, or Toronto, is not the problem as their are some great Canadian doctors who are highly knowledgeable in hormonal therapy. Even Dr. Klotz, though he is a surgeon, helped launch research on intermittent hormonal therapy, the approach that now looks superior to continuous therapy for many of us (not all, especially many men with metastatic prostate cancer). There is some world-leading expertise in hormonal therapy in Vancouver, and Dr. Fernand Labrie has made some key contributions at Laval University in Quebec. Toronto researchers have also contributed.

The problem in the US is that most surgeons, and even probably many radiation oncologists, do not understand the potential of hormonal therapy, the role of various drugs, combinations, and orchiectomy, how it works, how to monitor it, and how to manage a patient under that therapy. Many doctors and researchers also believe some key myths about that therapy, especially the myth about short typical success before the cancer becomes hormone refractory. I suspect the problem is the same in Canada. I'm thoroughly convinced that the best kind of doctor to handle that therapy is a medical oncologist, especially if the doctor has many prostate cancer patients in his practice, with the ideal being a nearly complete focus on prostate cancer; that's probably true no matter which side of the border you live on.


Quote:
It seems that the belief is that the side effects are horrible and that it may only be effective for a few years.
Both are myths based on overgeneralization and lack of countermeasures in the first case and very advanced patients in the second case (those with extensive painful bone mets, or at least extensive bone mets). I can point you to research by Dr. Crawford many years ago that both revealed the importance that stage of the disease makes and unfortunately provided some of the figures that have been misunderstood and misused. Dr. Fleshner does not appear to know much about hormonal therapy.

Quote:
I don't know if I'm misunderstanding but, for me, you are living proof that you can live with hormone therapy. It almost seems that the doctors here just don't have the same expertise with combination therapies and drugs to counteract the side effects.
Yes, one patient is enough to prove what is possible. However, patients with less advanced disease than mine often do better than I have done. Often they need just one course of triple blockade for about a year and then go for many years or indefinitely without needing another course. A problem is that such successes have been documented by individual doctors but have not been reported in large studies.

Quote:
Jim, what have you heard about Princess Margaret Hospital? Anybody out there have recommendations for certain experts I should try to get Irv to see?
I don't know it very well, but I've heard from a doctor I respect highly that it is a leading hospital. That's where ketoconazole was discovered to work for prostate cancer, unless my memory serves me wrong. Ketoconazole has become a very important element of second line hormonal therapy. I do not know of specific experts there.

Quote:
It's 5 am here...Haven't gone to sleep yet...The mind is always racing....

Regards, Rhonda
I hope you can get that sleep.

Take care,

Jim

 
Old 12-21-2010, 09:52 AM   #14
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Re: Eleven years ago today

Hi Jim,

First, congratulations on your continued great results! Your experiences and shared knowledge have been very instrumental in my peace of mind with this disease.

You stated in a response to Rhonda:
Quote:
More and more, early radiation is recommended for men with some risky features after prostatectomy. Until this week, I thought it was safe (and standard) to wait until the PSA neared 1.0, but being sure to get the radiation before that. I just learned that "the earlier the better" may be best. I'm thinking it's still wise to wait until the patient recovers from the prostatectomy.
As you may remember, what you describe is my situation: Gleason 9 with positive margins. 4.5 months after surgery, My PSA is undetectable. In consultation with Dr. Scholz, I am currently doing bi-monthly ultrasensitive PSA tests, putting off radiation and hormonal therapy until we see a rise in PSA. What lead to your new insights about 'the earlier the better?" I will note that we are not looking for a PSA of 1.0 before acting; instead, we will be watching for a trend, with the cutoff being in the low hundredths.

Thanks again,

Tom

 
Old 12-22-2010, 05:30 AM   #15
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Re: Eleven years ago today

Hi Tom (Gleason9),

Thanks for your kind remarks.

I'm responding to your very recent post, excerpted here:


Quote:
Originally Posted by Gleason9 View Post
Hi Jim,

...As you may remember, what you describe is my situation: Gleason 9 with positive margins. 4.5 months after surgery, My PSA is undetectable. In consultation with Dr. Scholz, I am currently doing bi-monthly ultrasensitive PSA tests, putting off radiation and hormonal therapy until we see a rise in PSA. What lead to your new insights about 'the earlier the better?" I will note that we are not looking for a PSA of 1.0 before acting; instead, we will be watching for a trend, with the cutoff being in the low hundredths.

...
Dr. Scholz has been using the ultrasensitive tests for more than a decade; as his practice focuses entirely on prostate cancer, he has seen a great many patients with all kinds of situations, including yours, as you no doubt are aware; he knows what the PSA pattern should look like, including the odds of recurrence at different ultrasensitive PSA levels. I think you are getting the best of care and will get the benefit of avoiding unnecessary radiation or using it very early, if needed, based on those ultrasensitive PSA test results in the hundredths. What you are doing is what I meant by as early as possible, but I can see now that I should have been clearer. Thanks for illuminating these key details.

Do you and Dr. Scholz have a target for starting radiation, if needed? I'm thinking that if you had a PSA <0.01, or a PSA of say 0.01 to 0.03 but stable, that radiation would not seem necessary. Would the trigger be a any rise, or a rise above, say, .03? As of several years ago, ultrasensitive results below 0.01 were not considered clinicaly useful. Do you know if there has been any change in that thinking? Dr. Scholz would be one of the first to be aware of a change, I think.

My basis for "the earlier the better" was the two doctors at our Us Too education and support group meeting this month, especially the radiation doctor. (The other was a medical oncologist, and a urologist was not able to come.) As for clues that early radiation was approprate, the radiation doctor was emphasizing post surgery clues like postive margins, seminal vesicle involvement, and extensive Gleason grade 4 from the post-surgery pathology. I asked the doctors about their use of ultrasensitive PSA tests, and neither used them. These doctors are both respected locally, and I think they do a lot of good for many patients; but their non-use of ultrasensitive tests is a sign of the enormous gulf in treatment expertise between leading experts, especially those who specialize in prostate cancer exclusively, and good local doctors. It seems to me that ultrasensitive PSA testing would be the key clue for deciding whether to have early radiation after surgery.

By the way, I have never formally consulted with Dr. Scholz. However, he reviewed an electronic synopsis of my challenging case when I was deciding back in 2002 whether to stop the Lupron and Casodex and go on intermittent therapy, continuing just the Proscar and bisphosphonate (and lifestyle tactics, of course). He said, in effect, that I would have a decent shot at success with intermittent therapy. I've also talked briefly with him twice at two of the National Conferences on Prostate Cancer, at which he is often a presenter, moderator, or host. Both times he gave me key information. I've benefited greatly from so much of the information that his practice has learned and communicated about prostate cancer, including the fact that most of us will be successful with intermittent blockade for either about ten to eleven years or indefinitely longer. He is one of my heroes!

Again, thanks for spotlighting this important issue.

Take care,

Jim

 
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