Re: worried but coping

[Guest guest]

Thanks Terry. I think I really needed to hear that from someone. I am not giving up by any means but it does make me depondent.The new drug may help, but then again they said the Zoladex would help too. When I go to see the urologist next month I plan to ask a lot of questions. I will ask if they are going to refer me to an oncologist and if not why. Then I will demand they do. There are more questions than answers right now and I don't know what they are though I have a few in mind. Thanks for the kind words. It means a lot to me.

Dave

To: ProstateCancerSupport Sent: Tue, August 31, 2010 2:45:32 PMSubject: RE: getting worried

Dave, It always concerns me when I read statements like yours <snip> Getting really worried now. Once it goes into bone it's pretty much over as I understand it. <snip> because it ain’t necessarily so. I was told I my disease had metastasized to the bone four years ago and I certainly don’t think it is ‘pretty much over’ for me!!

I don’t want to minimize your concerns or the fact that advanced prostate cancer that has metastasized to the bone can be extremely dangerous, BUT……as Aubrey Pilgrim used to say time and again The Golden Rule Of Prostate Cancer Is That There Are No Rules. There is a multiplicity of variants in the disease itself; our own metabolism can change the outcome; treatment effects vary widely. The most important thing is not to give up hope, to seek knowledge and the best advice you can get from the best oncologist you can find.

You might also go to the Indexes on my site and look for the stories of men with T4 diagnoses because that means they had metastasis when diagnosed. Many people discount the value of anecdotal evidence, but if you start at http://www.yananow.net/Chart-Gleasonu6.htm#8 (which shows the men with Gleason Scores of 8 or higher, since those diagnoses are more often associated with metastasized disease), you will see the stories of men who have died but you will also see stories of men for whom it was not ‘pretty well over’ and who are still battling on – one man on (http://www.yananow.net/Mentors/H.htm ) who was diagnosed in 2002 – eight years ago. Mail these men, ask them for guidance in what they did and why. Of course they can’t tell you, with your particular diagnosis what you must do, but they can from their

collective knowledge, perhaps point you in a direction that might be useful to discuss with your chosen oncologist.

And never give up hope.

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

From: ProstateCancerSupport [mailto: ProstateCancerSupport ] On Behalf Of DaveSent: Wednesday, 1 September 2010 4:01 AMTo: ProstateCancerSupport Subject: getting worried

Went last week and had another bone scan done because I have been having a lot of leg and shoulder pain. Talked to the uro on the phone yesterday and tells me it has spread to the bone. Not a good day for me yesterday. They have me on a new medicine, bicalutamide. Have another appt. with uro on Sept. 14th so will find out more then.Also, my PSA which had previously gone way done to 6.0 went to 60 and my most recent PSA test shows it went up a little more, but uro didnt say exactly what it is now.Getting really worried now. Once it goes into bone it's pretty much over as I understand it.Dave

[Guest guest]

dave halvorsen wrote:

> Thanks Terry. I think I really needed to hear that from

> someone. I am not giving up by any means but it does make me

> depondent.The new drug may help, but then again they said the

> Zoladex would help too.

I expect that the Zoladex did indeed help, but the help didn't

last as long as everyone hoped.

> When I go to see the urologist next month I plan to ask a lot

> of questions. I will ask if they are going to refer me to an

> oncologist and if not why. Then I will demand they do.

If the doctor thinks that you don't need an oncologist because he

can treat you just fine, ask him what he thinks about each of the

following drugs:

ketoconazole

lenalidomide (trade name Revlimid)

estradiol

estramustine (trade name Emcyt)

diethylstilbestrol (DES)

docetaxel (a chemotherapy drug, trade name Taxotere)

Provenge

Abiraterone

MDV3100

cabizitaxel

Terry pointed out two stories on his yananow.org website of men

who look like they had very advanced cases of PCa and were

hormone refractory (i.e., Zoladex or similar drugs had stopped

working). But they still got more years of life out of

treatments from some of these drugs.

If, when you name the drugs, the doctor says " huh? " and can't

speak intelligently about them, then he's not an expert on the

medical treatment of PCa and he needs to refer you to someone who

is, pronto.

It may be that adding Casodex/bicalutamide will cause your PSA to

go down. That's good if it does. But you still need to switch

to a medical oncologist because you almost certainly will need

other drugs in the future.

With or without a referral from the urologist, you can try to

locate a medical oncologist on your own. Here's a web page that

can help you find one:

http://www.prostate-cancer.org/pcricms/node/38

There are others too.

Your insurance company or your primary care physician may also be

able to refer you to someone, but be sure to emphasize that

you're interested in someone who treats a lot of prostate cancer.

There are many medical oncologists specializing in other cancers

who won't know as much as a true PCa expert.

Best of luck.

Alan

[Guest guest]

Alan.

Thanks for the advice. I will certainly ask the doctor about those drugs. He probably will refer me to an oncologist and I certainly hope so. All my treatment is done thru the VA so I dont have much choice. All I can do is raise a fuss if he wont refer me to the oncology dept. I will take a look at the yannow site for certain. Thanks again for all your help. It does ease my mind some.

Dave

To: ProstateCancerSupport Sent: Tue, August 31, 2010 7:09:03 PMSubject: Re: worried but coping

dave halvorsen wrote:> Thanks Terry. I think I really needed to hear that from> someone. I am not giving up by any means but it does make me> depondent.The new drug may help, but then again they said the> Zoladex would help too.I expect that the Zoladex did indeed help, but the help didn'tlast as long as everyone hoped.> When I go to see the urologist next month I plan to ask a lot> of questions. I will ask if they are going to refer me to an> oncologist and if not why. Then I will demand they do.If the doctor thinks that you don't need an oncologist because hecan treat you just fine, ask him what he thinks about each of thefollowing drugs:ketoconazolelenalidomide (trade name Revlimid)estradiolestramustine

(trade name Emcyt)diethylstilbestrol (DES)docetaxel (a chemotherapy drug, trade name Taxotere)ProvengeAbirateroneMDV3100cabizitaxelTerry pointed out two stories on his yananow.org website of menwho look like they had very advanced cases of PCa and werehormone refractory (i.e., Zoladex or similar drugs had stoppedworking). But they still got more years of life out oftreatments from some of these drugs.If, when you name the drugs, the doctor says "huh?" and can'tspeak intelligently about them, then he's not an expert on themedical treatment of PCa and he needs to refer you to someone whois, pronto.It may be that adding Casodex/bicalutamide will cause your PSA togo down. That's good if it does. But you still need to switchto a medical oncologist because you almost certainly will needother drugs in the future.With

or without a referral from the urologist, you can try tolocate a medical oncologist on your own. Here's a web page thatcan help you find one:http://www.prostate-cancer.org/pcricms/node/38There are others too.Your insurance company or your primary care physician may also beable to refer you to someone, but be sure to emphasize thatyou're interested in someone who treats a lot of prostate cancer.There are many medical oncologists specializing in other cancerswho won't know as much as a true PCa expert.Best of luck.Alan

[Guest guest]

Dave,

Where are you? I am in Houston and they have a department for helping Vets because of agent orange. I am not using them because of the insurance I have. It would be free to me because I am fully disabled.

Tomnm

To: ProstateCancerSupport Sent: Tue, August 31, 2010 9:26:37 PMSubject: Re: worried but coping

Alan.

Thanks for the advice. I will certainly ask the doctor about those drugs. He probably will refer me to an oncologist and I certainly hope so. All my treatment is done thru the VA so I dont have much choice. All I can do is raise a fuss if he wont refer me to the oncology dept. I will take a look at the yannow site for certain. Thanks again for all your help. It does ease my mind some.

Dave

To: ProstateCancerSupport Sent: Tue, August 31, 2010 7:09:03 PMSubject: Re: worried but coping

dave halvorsen wrote:> Thanks Terry. I think I really needed to hear that from> someone. I am not giving up by any means but it does make me> depondent.The new drug may help, but then again they said the> Zoladex would help too.I expect that the Zoladex did indeed help, but the help didn'tlast as long as everyone hoped.> When I go to see the urologist next month I plan to ask a lot> of questions. I will ask if they are going to refer me to an> oncologist and if not why. Then I will demand they do.If the doctor thinks that you don't need an oncologist because hecan treat you just fine, ask him what he thinks about each of thefollowing drugs:ketoconazolelenalidomide (trade name Revlimid)estradiolestramustine

(trade name Emcyt)diethylstilbestrol (DES)docetaxel (a chemotherapy drug, trade name Taxotere)ProvengeAbirateroneMDV3100cabizitaxelTerry pointed out two stories on his yananow.org website of menwho look like they had very advanced cases of PCa and werehormone refractory (i.e., Zoladex or similar drugs had stoppedworking). But they still got more years of life out oftreatments from some of these drugs.If, when you name the drugs, the doctor says "huh?" and can'tspeak intelligently about them, then he's not an expert on themedical treatment of PCa and he needs to refer you to someone whois, pronto.It may be that adding Casodex/bicalutamide will cause your PSA togo down. That's good if it does. But you still need to switchto a medical oncologist because you almost certainly will needother drugs in the

future.With or without a referral from the urologist, you can try tolocate a medical oncologist on your own. Here's a web page thatcan help you find one:http://www.prostate-cancer.org/pcricms/node/38There are others too.Your insurance company or your primary care physician may also beable to refer you to someone, but be sure to emphasize thatyou're interested in someone who treats a lot of prostate cancer.There are many medical oncologists specializing in other cancerswho won't know as much as a true PCa expert.Best of luck.Alan

[Guest guest]

I am about 30 minutes north of Seattle and go to the Seattle VA. I see the oncologist on the 14th. Dont know if they treat prostate cancer due to agent orange any different. Do they? I would be interested in hearing if they do that at the Houston VA.

Dave Halvorsen

To: ProstateCancerSupport Sent: Sun, September 5, 2010 1:02:55 PMSubject: Re: worried but coping

Dave,

Where are you? I am in Houston and they have a department for helping Vets because of agent orange. I am not using them because of the insurance I have. It would be free to me because I am fully disabled.

Tomnm

To: ProstateCancerSupport Sent: Tue, August 31, 2010 9:26:37 PMSubject: Re: worried but coping

Alan.

Thanks for the advice. I will certainly ask the doctor about those drugs. He probably will refer me to an oncologist and I certainly hope so. All my treatment is done thru the VA so I dont have much choice. All I can do is raise a fuss if he wont refer me to the oncology dept. I will take a look at the yannow site for certain. Thanks again for all your help. It does ease my mind some.

Dave

To: ProstateCancerSupport Sent: Tue, August 31, 2010 7:09:03 PMSubject: Re: worried but coping

dave halvorsen wrote:> Thanks Terry. I think I really needed to hear that from> someone. I am not giving up by any means but it does make me> depondent.The new drug may help, but then again they said the> Zoladex would help too.I expect that the Zoladex did indeed help, but the help didn'tlast as long as everyone hoped.> When I go to see the urologist next month I plan to ask a lot> of questions. I will ask if they are going to refer me to an> oncologist and if not why. Then I will demand they do.If the doctor thinks that you don't need an oncologist because hecan treat you just fine, ask him what he thinks about each of thefollowing drugs:ketoconazolelenalidomide (trade name Revlimid)estradiolestramustine

(trade name Emcyt)diethylstilbestrol (DES)docetaxel (a chemotherapy drug, trade name Taxotere)ProvengeAbirateroneMDV3100cabizitaxelTerry pointed out two stories on his yananow.org website of menwho look like they had very advanced cases of PCa and werehormone refractory (i.e., Zoladex or similar drugs had stoppedworking). But they still got more years of life out oftreatments from some of these drugs.If, when you name the drugs, the doctor says "huh?" and can'tspeak intelligently about them, then he's not an expert on themedical treatment of PCa and he needs to refer you to someone whois, pronto.It may be that adding Casodex/bicalutamide will cause your PSA togo down. That's good if it does. But you still need to switchto a medical oncologist because you almost certainly will needother drugs in the

future.With or without a referral from the urologist, you can try tolocate a medical oncologist on your own. Here's a web page thatcan help you find one:http://www.prostate-cancer.org/pcricms/node/38There are others too.Your insurance company or your primary care physician may also beable to refer you to someone, but be sure to emphasize thatyou're interested in someone who treats a lot of prostate cancer.There are many medical oncologists specializing in other cancerswho won't know as much as a true PCa expert.Best of luck.Alan

[Guest guest]

Dave,

I am not sure since I am using MD but I did go up to the PCa area in the VA in Houston and saw a PA when I was investigating who I would use. I can tell the facility is pretty good. I get most of my meds from there.

If you decide to investigate I will meet you and show you the facility if I am not in Thailand. I do know they use Casodex instead of Lupron.

Tom

To: ProstateCancerSupport Sent: Sun, September 5, 2010 7:29:00 PMSubject: Re: worried but coping

I am about 30 minutes north of Seattle and go to the Seattle VA. I see the oncologist on the 14th. Dont know if they treat prostate cancer due to agent orange any different. Do they? I would be interested in hearing if they do that at the Houston VA.

Dave Halvorsen

To: ProstateCancerSupport Sent: Sun, September 5, 2010 1:02:55 PMSubject: Re: worried but coping

Dave,

Where are you? I am in Houston and they have a department for helping Vets because of agent orange. I am not using them because of the insurance I have. It would be free to me because I am fully disabled.

Tomnm

To: ProstateCancerSupport Sent: Tue, August 31, 2010 9:26:37 PMSubject: Re: worried but coping

Alan.

Thanks for the advice. I will certainly ask the doctor about those drugs. He probably will refer me to an oncologist and I certainly hope so. All my treatment is done thru the VA so I dont have much choice. All I can do is raise a fuss if he wont refer me to the oncology dept. I will take a look at the yannow site for certain. Thanks again for all your help. It does ease my mind some.

Dave

To: ProstateCancerSupport Sent: Tue, August 31, 2010 7:09:03 PMSubject: Re: worried but coping

dave halvorsen wrote:> Thanks Terry. I think I really needed to hear that from> someone. I am not giving up by any means but it does make me> depondent.The new drug may help, but then again they said the> Zoladex would help too.I expect that the Zoladex did indeed help, but the help didn'tlast as long as everyone hoped.> When I go to see the urologist next month I plan to ask a lot> of questions. I will ask if they are going to refer me to an> oncologist and if not why. Then I will demand they do.If the doctor thinks that you don't need an oncologist because hecan treat you just fine, ask him what he thinks about each of thefollowing drugs:ketoconazolelenalidomide (trade name Revlimid)estradiolestramustine

(trade name Emcyt)diethylstilbestrol (DES)docetaxel (a chemotherapy drug, trade name Taxotere)ProvengeAbirateroneMDV3100cabizitaxelTerry pointed out two stories on his yananow.org website of menwho look like they had very advanced cases of PCa and werehormone refractory (i.e., Zoladex or similar drugs had stoppedworking). But they still got more years of life out oftreatments from some of these drugs.If, when you name the drugs, the doctor says "huh?" and can'tspeak intelligently about them, then he's not an expert on themedical treatment of PCa and he needs to refer you to someone whois, pronto.It may be that adding Casodex/bicalutamide will cause your PSA togo down. That's good if it does. But you still need to switchto a medical oncologist because you almost certainly will needother drugs in the

future.With or without a referral from the urologist, you can try tolocate a medical oncologist on your own. Here's a web page thatcan help you find one:http://www.prostate-cancer.org/pcricms/node/38There are others too.Your insurance company or your primary care physician may also beable to refer you to someone, but be sure to emphasize thatyou're interested in someone who treats a lot of prostate cancer.There are many medical oncologists specializing in other cancerswho won't know as much as a true PCa expert.Best of luck.Alan