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Power-User

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Location: Near Rochester, New York
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Prostate Cancer Treatment And Survival

10/14/2007 6:37 PM

I was diagnosed with advanced prostate cancer in March, 1999. Until that day, I didn't even know what a prostate was, but I immediately became a highly motivated student of the subject. I received advice that I didn't believe from the very beginning. I started making decisions based on intuition and, at the same time, studying relevant material. Like most patients I began with the material in the local library but soon graduated to published, peer reviewed studies.

My wife was able to obtain a number of papers for me through her work in health care and I found the UMASS Medical School and Stony Brook Hospital libraries very cooperative in allowing me access to their stacks and copying machines. My best and most informative information source, however, was a CR4-like network operated by a fellow patient named Don Cooley. He had several groups you could join and made a lot of information (including my own book) available on line, at no cost.

Don had over 2000 participants and I received an average of 5 to 10 messages a day from people in the group. If you can imagine the abilities of that many interested patients brought to one forum you may be able to appreciate the value of that net. They didn't all have great technical depth, but some were doctors and many had done extensive independent study. There were the usual crackpots and comedians, but that just lightened up a gloomy subject. The thoughts of so many highly focused individuals, though, were a gold mine of leads, concepts, experiences and data. I don't think I'm exaggerating to say that I may owe my life to information obtained as a result of participation in that group.

Last year, Don reached an age at which he didn't wish to continue the stress of maintaining that network and he closed it down. That left a gaping hole in my life and put me back on my own for continued research. It happened at a bad time for me, because my cancer was about to become hormone refractory and I've had to dig a lot harder for the information I need to stay alive. I still hear from a few people around the world who seemed to believe in my approaches and want to stay in touch so I'm glad to keep them advised, but I do miss the Cooley network.

After seeing the response to the series that Moose presented, it occurred to me that there might be enough interest in prostate cancer within CR4 to keep a small exchange going. If so, I would be glad to contribute anything I can in response to queries here. If not, that's OK too.

Best regards.

DickL

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Guru
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Location: Harlow England
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#1

Re: Prostate Cancer Treatment And Survival

10/15/2007 3:29 AM

Hi,

Good post, blokes can sometimes be a bit shy about talking about this stuff and anything that encourages communicaion and an early checkup rather than the 'head in the sand ' attitude is great.

(There were the usual crackpots and comedians. I have no idea what you mean!)

Godd luck

Del

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Power-User

Join Date: Nov 2006
Location: Near Rochester, New York
Posts: 157
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#5
In reply to #1

Re: Prostate Cancer Treatment And Survival

10/16/2007 4:51 PM

Thanks Del. I should have realized that no one in CR4 would understand my allusion to crackpots and comedians because this is a very serious group indeed.

Dick

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Anonymous Poster
#2

Re: Prostate Cancer Treatment And Survival

10/15/2007 8:59 AM

Dick

Sorry to hear that you have become hormone refractory. Since the Cooley group is no longer available I have started another internet group for guys and their families that have advanced disease. You may want to check it out.

http://health.groups.yahoo.com/group/advancedprostatecancer/join

I noticed you live in the metro NYC area so you also might want to consider the weekly malecare group that meets at Beth Israel Ambulatory Care Ct in Union Square. It is different then most other groups, check out the web site at www.malecare.com.

We also have a monthly meeting at St. Vincent's Comprehensive Cancer Care Ct in the West side of Manhattan.

I write a blog specifically about advanced disease at www.advancedprostatecancer.net

If you want additional information you can email me at JoelTNowak@gmail.com

Good luck and let me know if you have any qustions.

Joel

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Power-User

Join Date: Nov 2006
Location: Near Rochester, New York
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#4
In reply to #2

Re: Prostate Cancer Treatment And Survival

10/16/2007 11:42 AM

Your blog is excellent and reflects a lot of study and work on your part. I'll definitely use it. Thank you for the link. I still miss the personalized, daily "give-and-take" of the email based system, though.

DickL

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Guru

Join Date: Dec 2006
Location: Germany 49° 26' N, 7° 46' O
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#3

Re: Prostate Cancer Treatment And Survival

10/16/2007 4:08 AM

http://www.worldhealth.net/p/273,5736.html

Hi DickL and others,

after our last discussion on strontium I found the above website that has a lot of important information on strontium.

I did not find any data on the tolerated dose that is given by kidney capacity.

Many people do not tolerate calcium above 400mg/d as above this dose calcium will be excreted in urine no longer as solution but as some type of sediment, indicating overdosing and possible danger of stone formation.

So if you take a lot then have a careful look at your urine in a clear glass if there are non dissolved sediments.

The same but may be at different levels is likely to exist with strontium.

As we are beyond any doubt adapted to the minerals that are existing in seawater and there is 8mg/kg of strontium in seawater together with 400mg calcium we should take minimum this dose.

I had a talk to an oncological working MD, he was informed about better bone strength with strontium intake but did nor realise that there are safe isotopes and long time good results of medical use. But he will start to watch and try.

I myself will try too but I am not sure at which level (most likely as citrate (cheap)).

RHABE

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Power-User

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#6
In reply to #3

Re: Prostate Cancer Treatment And Survival

10/16/2007 5:29 PM

RHABE:

Strontium could change lives, but receives little attention in this country. Its most significant feature is that it travels to bone in the human body. That gives it two very important uses, one structural and one therapeutic.

Standard practice in this country is to prescribe biophosphonates for people who are at risk for bone loss because of old age, medications or cancer. This is a very serious condition, possibly crippling, possibly fatal. The biophosphonates are expensive and create a predisposition for osteonecrosis, a particularly nasty side effect, that produces non-healing, infected lesions, usually in the jawbone. Strontium has been shown to reverse bone loss in osteoporitic women and actually increase bone mass and strength while reducing the frequency of fractures. And it's cheap.

Radioactive strontium 89 (NOT 90) is used in treating cancer in bones (typical of prostate cancer) because it carries the radioactivity selectively to bone and to the cancerous lesions. I was intending to use it myself until I learned of samarium 153. That emits lower energy radiation, has a much shorter half-life and can be used repeatedly. The higher energy strontium is too damaging to bone marrow for continued use.

I have used 680 mg/day of strontium, as citrate, for almost two years and found that it eliminated a lot of the little aches and pains over time. It's cheap and effective. I regret that I was started on Zometa in 2004 without being warned of the risk of osteonecrosis. I don't know how long the susceptibility to osteonecrosis remains after stopping the biophosphonates.

I recommend that anyone experiencing bone loss look into the use of strontium.

DickL

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Anonymous Poster
#7

Re: Prostate Cancer Treatment And Survival

10/23/2007 8:16 AM

My name is Islay and my father has advanced prostate cancer. He has survived years longer then the doctors said he would. My father is a proud man and does not like to talk about it. He was a plant scientist before he retired and was a strong man until now. One of the things he thinks has helped him is Dr Red 'Blueberry Punch' as well as eating tomatoes. My father is my mothers and my life we take each day as it comes and are thankful that he is still here and that we have had 10 years more then the doctors said we would.

orcainalaska@hotmail.com.au

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Power-User

Join Date: Nov 2006
Location: Near Rochester, New York
Posts: 157
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#8
In reply to #7

Re: Prostate Cancer Treatment And Survival

10/23/2007 9:16 AM

Hi Islay:

I've replied by email but, if you prefer, I'd be glad to offer any suggestions that I can in this forum. Feel free to contact me. Good luck.

Dick Leahy

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Anonymous Poster (2); Del the cat (1); DickL (4); RHABE (1)

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