Re: Welcome, Smiley!

[Guest guest]

Thx you've sent this to me twice. I'm past the point you refer toBest wishesNikkoDate: Tue, 06 Apr 2010 11:26:38 -0700To: <ProstateCancerSupport >Subject: Welcome, Smiley! Welcome to the club no one wants to join.I have some suggestions that will help to make well-informed decisions.Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa. " Find people who are more interested in helping you to learn than teaching you what *they* think you need to know. " -- Young, PCa MentorPhoenix 5There is a lot to do.(1) If applicable, I recommend having the biopsy specimens examined bya pathology lab that specializes in prostate cancer (PCa). Everythingthat is done from here on depends upon the accuracy of the Gleasonscoring. Here is a list of such labs:Bostwick Laboratories [800] 214-6628Dianon Laboratories [800] 328-2666 (select 5 for client services)Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162Jon Oppenheimer (Tennessee) [800] 881-0470 Lucia (303)724-3470This is a " second opinion " and should be covered by insurance/Medicare. The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered.The chosen lab can give instructions on shipment arrangements.In civilized jurisdictions, those specimens are the property of thepatient and not the medic, not the lab. Sometimes it is necessary toeducate them on that point.(2) The authoritative website of the Prostate Cancer ResearchInstitute (PCRI) at http://www.prostate-cancer.org/pcricms/is an excellent beginning.See also http://www.prostate-cancer.org/pcricms/node/126 if newly diagnosed.Some access to medics who specialize in treatment (tx) of PCa are listed viathis portal: http://www.prostate-cancer.org/pcricms/node/38If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral.There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home.(3) I heartily recommend this comprehensive text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical oncologist and PCa specialist B. Strum, MD and PCa warriorDonna Pogliano. It is available from the PCRI website and the like, aswell as Amazon (30+ five-star reviews), & Noble, andbookstores. A lifesaver, as I very well know.(4) Personal contact with other patients can be very helpful. Localchapters of the international support group Us Too can be found viatheir website at http://www.ustoo.com/chapter_nearyou.aspRegards,Steve J " Empowerment: taking responsibility for and authority over one's ownoutcomes based on education and knowledge of the consequences andcontingencies involved in one's own decisions. This focus provides theuplifting energy that can sustain in the face of crisis. " --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled " The Empowered Patient's Guide. "

[Guest guest]



Nikko

Everyone receives all the messages.Steve sends this one out regularly for new members.

Let us know if we can help in other ways

B

Welcome, Smiley!

Welcome to the club no one wants to join.I have some suggestions that will help to make well-informed decisions.Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa."Find people who are more interested in helping you to learn than teaching you what *they* think you need to know."-- Young, PCa MentorPhoenix 5There is a lot to do.(1) If applicable, I recommend having the biopsy specimens examined bya pathology lab that specializes in prostate cancer (PCa). Everythingthat is done from here on depends upon the accuracy of the Gleasonscoring. Here is a list of such labs:Bostwick Laboratories [800] 214-6628Dianon Laboratories [800] 328-2666 (select 5 for client services)Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162Jon Oppenheimer (Tennessee) [800] 881-0470 Lucia (303)724-3470This is a "second opinion" and should be covered by insurance/Medicare. The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered.The chosen lab can give instructions on shipment arrangements.In civilized jurisdictions, those specimens are the property of thepatient and not the medic, not the lab. Sometimes it is necessary toeducate them on that point.(2) The authoritative website of the Prostate Cancer ResearchInstitute (PCRI) at http://www.prostate-cancer.org/pcricms/is an excellent beginning.See also http://www.prostate-cancer.org/pcricms/node/126 if newly diagnosed.Some access to medics who specialize in treatment (tx) of PCa are listed viathis portal: http://www.prostate-cancer.org/pcricms/node/38If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral.There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home.(3) I heartily recommend this comprehensive text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist B. Strum, MD and PCa warriorDonna Pogliano. It is available from the PCRI website and the like, aswell as Amazon (30+ five-star reviews), & Noble, andbookstores. A lifesaver, as I very well know.(4) Personal contact with other patients can be very helpful. Localchapters of the international support group Us Too can be found viatheir website at http://www.ustoo.com/chapter_nearyou.aspRegards,Steve J"Empowerment: taking responsibility for and authority over one's ownoutcomes based on education and knowledge of the consequences andcontingencies involved in one's own decisions. This focus provides theuplifting energy that can sustain in the face of crisis."--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled"The Empowered Patient's Guide."

[Guest guest]

Thx I have bone mets. Docs only have palliative suggestions. Will have to look for alternate methods or places ( outside US?)Best wishesNikkoDate: Tue, 6 Apr 2010 19:41:47 +0100To: <ProstateCancerSupport >Subject: Re: Welcome, Smiley! Nikko Everyone receives all the messages.Steve sends this one out regularly for new members. Let us know if we can help in other ways B Welcome, Smiley! Welcome to the club no one wants to join.I have some suggestions that will help to make well-informed decisions.Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa."Find people who are more interested in helping you to learn than teaching you what *they* think you need to know."-- Young, PCa MentorPhoenix 5There is a lot to do.(1) If applicable, I recommend having the biopsy specimens examined bya pathology lab that specializes in prostate cancer (PCa). Everythingthat is done from here on depends upon the accuracy of the Gleasonscoring. Here is a list of such labs:Bostwick Laboratories [800] 214-6628Dianon Laboratories [800] 328-2666 (select 5 for client services)Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162Jon Oppenheimer (Tennessee) [800] 881-0470 Lucia (303)724-3470This is a "second opinion" and should be covered by insurance/Medicare. The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered.The chosen lab can give instructions on shipment arrangements.In civilized jurisdictions, those specimens are the property of thepatient and not the medic, not the lab. Sometimes it is necessary toeducate them on that point.(2) The authoritative website of the Prostate Cancer ResearchInstitute (PCRI) at http://www.prostate-cancer.org/pcricms/is an excellent beginning.See also http://www.prostate-cancer.org/pcricms/node/126 if newly diagnosed.Some access to medics who specialize in treatment (tx) of PCa are listed viathis portal: http://www.prostate-cancer.org/pcricms/node/38If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral.There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home.(3) I heartily recommend this comprehensive text on PCa:_A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist B. Strum, MD and PCa warriorDonna Pogliano. It is available from the PCRI website and the like, aswell as Amazon (30+ five-star reviews), & Noble, andbookstores. A lifesaver, as I very well know.(4) Personal contact with other patients can be very helpful. Localchapters of the international support group Us Too can be found viatheir website at http://www.ustoo.com/chapter_nearyou.aspRegards,Steve J"Empowerment: taking responsibility for and authority over one's ownoutcomes based on education and knowledge of the consequences andcontingencies involved in one's own decisions. This focus provides theuplifting energy that can sustain in the face of crisis."--Donna Pogliano, co-author of_A Primer on Prostate Cancer_, subtitled"The Empowered Patient's Guide."

[Guest guest]

Nikko wrote:

> Thx

> I have bone mets. Docs only have palliative suggestions. Will

> have to look for alternate methods or places ( outside US?)

Nikko,

I recommend extreme caution when dealing with " alternate methods

and places " . I haven't seen a single one of the " alternate "

clinics in Europe or Mexico that I wouldn't characterize as

fraudulent. Many of them have staff with apparently real medical

degrees and look legitimate, but when you investigate you find

out that they are using therapies that haven't a shred of real

evidence behind them, and have testimonials from people who wrote

them while feeling good and then subsequently died, or who didn't

actually have cancer at all.

Terminal cancer patients are a desperate group for whom money is

no object, and there are thousands of predators out there just

waiting to prey on them. If you hold up $10,000 and offer it to

anyone who can cure your cancer, there'll be a stampede of fakers

fighting each other to get to you.

You might think you have nothing to lose, but it isn't so. It's

not just the money - which can be many thousands of dollars.

It's also the time spent away from home doing something useless

and possibly harmful with what remains of the limited time

available.

If your doctors are only offering palliative care, you might wish

to investigate clinical trials. Look for example at:

http://www.cancer.gov/search/SearchClinicalTrials.aspx?protocolsearchid=7543233

Fill in the form any way that makes sense to you.

Most of the trials will probably be inappropriate for you, but

some may not.

You can't expect a cure from experimental drugs or treatments. I

don't know of any drugs in trials that look like permanent cures.

What they offer is possible life extension and/or possible

palliation for some patients. As with hormone therapy, some

patients taking experimental drugs get significant benefit and

some don't. There's no way to know in advance. Also, some are

two arm studies with one arm getting a placebo or, more likely, a

standard treatment, rather than the experimental drug.

So it's a crap shoot with the odds stacked against you but, once

all other options have run out, it may be the only game left. It

also has the benefit of using your illness to help scientists

work on a cure for the disease. If it doesn't benefit you, it

might, in at least a small way, benefit your sons and grandsons

and millions of others that come after you.

Speaking of other options, has your oncologist tried any of the

following:

ADT3

ketoconazole

thalidimide (Revlimid)

leukine

docetaxel

If not, or if he answers " huh? " when you ask him about any of

them, you might try to find a medical oncologist with more

experience in prostate cancer. Unfortunately, they are not

always easy to find, but if you tell us your geographical area

there may be people here who can suggest names to you.

Best of luck to you.

Alan

[Guest guest]

> I recommend extreme caution when dealing with " alternate methods

> and places " . I haven't seen a single one of the " alternate "

> clinics in Europe or Mexico that I wouldn't characterize as

> fraudulent. Many of them have staff with apparently real medical

> degrees and look legitimate, but when you investigate you find

> out that they are using therapies that haven't a shred of real

> evidence behind them, and have testimonials from people who wrote

> them while feeling good and then subsequently died, or who didn't

> actually have cancer at all.

(snip more good advice)

I most heartily support what Alan has written, especially about

those who have no conscience waiting to prey on those who are

desperate.

One of them was arrested in San Diego about a year ago for all

sorts of medical fraud. He ran a “clinic†in Mexico. I’m unsure

of his current criminal status. His name is Kurt Donsbach. He is

not licensed to practice. I could go on and on, but my point is

to reference an example. More can be found about him and others

of his sort on http://www.quackwatch.org/index.html

I do hope that the “docs†include a real cancer specialist, a

medical oncologist; preferably one who is well-trained in

treatment of PCa (prostate cancer).

Regards,

Steve J

[Guest guest]

Thanks Steve. I appreciate the welcome and the offered resources. I'll be

reading and lurking for a bit. I appreciate this site.

Smiley in Montana