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Old 10-06-2009, 09:26 AM   #1
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Need suggestions for Stage IV PC

Hi there, we are new to this site and would appreciate any support. Our Dad is 62 recently dx w PC. Gleason 8, PSA 1740, metstasis to Right pelvis and 1 hot spot on sternum. Non symptomatic otherwise. Orchiectomy done on oct 2nd. The urologist has put him on LHRH Agonist - Bicalutamide. He has also recommended bone density test - dexascan. We are seeing the urologist at the end of the month at which time we will be taking the dexa scan results along with the new PSA score with us. We saw many refrences to Triple Hormone therapy on this board. We look forward to feedback from you all to give us some thoughts on that and other treatment options. Thanks, Goel family from New Delhi.

 
Old 10-06-2009, 11:32 AM   #2
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Re: Need suggestions for Satge IV PC

Hi Goel Family,

Welcome to the board!

I'm so sorry that your family and especially your dad is now having to go through this troubling time! He has a very challenging case, but take heart that many men have done well despite such worrisome case characteristics, and it appears that his doctor is quite knowledgeable based on what you have shared in your post.

I am nearing the tenth anniversary of my diagnosis with a challenging case of prostate cancer, though my PSA was "only" 113.6; I have been treated only with hormonal blockade therapy, which evolved into triple therapy in the first year, and I have been able to use that therapy intermittently.

I'm glad you are looking back to other posts on the board, but I'll draw together some points here, in green. Jim

[QUOTE=Goelfamily;4094046]Hi there, we are new to this site and would appreciate any support. Our Dad is 62 recently dx w PC. Gleason 8, PSA 1740, metstasis to Right pelvis and 1 hot spot on sternum. Non symptomatic otherwise.

I don't know if it is any comfort, but the PSA can go much higher; of course those high PSAs are not good. It appears that he does not currently have widespread bone metastasis, nor does he have pain, and both of those facts indicate that some options are open to him and that his prognosis is quite a bit better than if he now had widespread mets and/or pain.

Orchiectomy done on oct 2nd. The urologist has put him on LHRH Agonist - Bicalutamide.

Those are the two main elements of hormonal blockade therapy for advanced cases, and there is some evidence (especially a recent multi-institutional Japanese study of hormonal therapy) that orchiectomy has even better results than medical deprivation of testicular testosterone (in the US, with drugs like Lupron, Zoladex, Viadur, Trelstar and recently degarelix). (I've been on and off Lupron - now on since September 2008 - since December 1999.) For a case with characteristics like your dad's case, continuous hormonal blockade, which orchiectomy accomplishes, is normally considered best.

Bicalutamide, available by that name as a generic drug now in the US but also available as the much higher priced brand named drug Casodex, is very important in blocking the docking sites for the androgen growth fuel on the cancer cells. Dosage is important, as more advanced cancer, like your dad's, means more docking sites on the cancer cell surfaces. In the US, the leading experts in hormonal therapy whom I follow as a patient would recommend 150 mg of the drug for a patient with metastases, like your dad. (I've always been on just one pill, a 50 mg dose; I've never had clear evidence of metastases, though virtually all doctors I've seen have been confident that I had micrometastases. I have done very well on triple blockade therapy using a bicalutamide dose of 50 mg, driving my PSA twice to <0.01, and then taking a vacation from the heavy duty drugs.) Bicalutamide will also go a long way in taking care of any surge in production of testosterone via the adrenal glands as the body recognizes the shortage and tries to make up for it.


He has also recommended bone density test - dexascan. We are seeing the urologist at the end of the month at which time we will be taking the dexa scan results

It's very important to assess Bone Mineral Density (BMD) and monitor it when a patient is on hormonal blockade therapy. In the US, the DEXA scan is the usual method, but some expert prostate cancer doctors strongly prefer a quantitative CT scan (qCT), especially if the patient has arthritis or calcification of the blood vessels, both of which can fool the DEXA scan into reporting overly favorable results. I believe I am free of both conditions, and I've had virtually annual DEXA scans since 2000 that have seemed to be valid and most helpful in managing my case.

If possible, I strongly recommend you obtain a copy of the book "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum and Donna Pogliano (2nd edition 2005, highly similar to the first edition but with a handful of added brief sections. It is outstanding on bone issues, including the scans, and it is also outstanding on hormonal blockade therapy, which it refers to by the term more commonly used in medical papers, "Androgen Deprivation Therapy" (ADT).

The Primer gives excellent information about the role of bone density drugs and details about them. For metastatic patients like your dad, in the US the drug Zometa would most likely be the choice. These drugs are supported by calcium and vitamin D3 supplementation, or by prescription vitamin D. By the way, a test of your dad's vitamin D level - known as the "25-hydroxy vitamin D" test - would also probably be helpful; many of us prostate cancer patients are also deficient in vitamin D.


along with the new PSA score with us.

With just a little luck, your dad's PSA score should plunge sharply. The therapy is almost certain to knock the cancer backward.

We saw many refrences to Triple Hormone therapy on this board.

The third element of triple therapy is finasteride, formerly known as Proscar but now available generically, or dutasteride, now available in the US only under the brand name Avodart. These drugs have several roles, but the main role is shutting off almost all of the conversion of testosterone into the much more powerful fuel DHT (dihydrotestosterone). Therefore, even if the body is still producing some testosterone and if there are some unblocked docking cites (known as androgen receptors), at least only the fuel with much lower potency will be getting to the dock. These drugs also quite substantially reduce blood flow to the prostate cancer tumors, which is also important. For most men, Avodart appears to be the better of the two drugs because it shuts down more of the conversion, more than 90% of it. A few men have a genetic problem with Avodart, so if the DHT level is not brought way down, then a shift to Avodart would be wise. (I have stuck with finasteride, two pills daily now, for nine years because my program has been so successful. Someday I may switch.)

I'm personally convinced that triple blockade is vitally important for men with challenging, advanced cases. Unfortunately, few medical papers have been published about the three drug combination, but there are several important pieces of evidence that it makes sense. Among those pieces are the trials of finasteride and Avodart to prevent prostate cancer, both of which demonstrated effectiveness against the disease by reducing incidence by around 25% to 30%. An early concern regarding high risk disease has now been virtually dismissed by the experts.

Some experts like to also check the prolactin level and add a fourth blockade drug, Dostinex. I am less familiar with that, and there may be some problems that make that approach a second or third choice if success is not achieved. That's something I need to learn more about.


We look forward to feedback from you all to give us some thoughts on that and other treatment options. Thanks, Goel family from New Delhi.

The other book that I highly recommend is "Beating Prostate Cancer: Hormonal Therapy & Diet" by Dr. Charles Myers, MD, and eminent medical oncologist specializing in prostate cancer, and himself a patient with a challenging case of metastatic prostate cancer whose cancer is now undetectable using an ultrasensitive PSA test (less than 0.01). In addition to reviewing the nutritional and lifestyle (exercise, stress reduction) tactics that support treatment and make life better, he outlines other drugs, such as leukine, and "second line" hormonal therapy tactics. He also advocates an approach I believe in: moving quickly to a more aggressive therapy if progress stagnates or is reversed with the current therapy.

Publications by the Prostate Cancer Research Institute (PCRI), a non-profit organization, are also most helpful.

I hope that your dad will find a therapy that works what will seem like a miracle! I wish you and your family the best.

Jim [/
QUOTE]

 
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Old 10-06-2009, 09:28 PM   #3
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Re: Need suggestions for Satge IV PC

Thank you so much Jim for your reply! We were hoping to hear from you having read your responses to other posts. I really liked your Summary of the PC Convention that you attended. Hope Dad can attend it next year.

Our Urologist is very nice and competent however we plan to discuss triple blockage with him since that is something he has not mentioned to us. We will also talk to him about the other tests that you have suggested. I wonder if Dad should also use intermitent therapy. He is currently on only 100 mg Bicalutamide.

When do you think we should seee an Oncologist? We have met a couple here already and were not very impressed.

We have already ordred Dr. Myers' book after reading about it on your previous posts and PC Forum. I live in Atlanta and am visiting here. My husband is mailing the book to us.

In your response below you have also talked about going for more aggressive therapy if our dad responds well to the current therapy. What would be defined as 'more agressive'? How do we know Dad is responding well - PSA score and bone scans?

Thank you so much for your help! Hopefully support like this will allow us to have a 10 year succcess story like yours! Take care. Goel Family.


[QUOTE=IADT3since2000;4094123]Hi Goel Family,

Welcome to the board!

I'm so sorry that your family and especially your dad is now having to go through this troubling time! He has a very challenging case, but take heart that many men have done well despite such worrisome case characteristics, and it appears that his doctor is quite knowledgeable based on what you have shared in your post.

I am nearing the tenth anniversary of my diagnosis with a challenging case of prostate cancer, though my PSA was "only" 113.6; I have been treated only with hormonal blockade therapy, which evolved into triple therapy in the first year, and I have been able to use that therapy intermittently.

I'm glad you are looking back to other posts on the board, but I'll draw together some points here, in green. Jim

Quote:
Originally Posted by Goelfamily View Post
Hi there, we are new to this site and would appreciate any support. Our Dad is 62 recently dx w PC. Gleason 8, PSA 1740, metstasis to Right pelvis and 1 hot spot on sternum. Non symptomatic otherwise.

I don't know if it is any comfort, but the PSA can go much higher; of course those high PSAs are not good. It appears that he does not currently have widespread bone metastasis, nor does he have pain, and both of those facts indicate that some options are open to him and that his prognosis is quite a bit better than if he now had widespread mets and/or pain.

Orchiectomy done on oct 2nd. The urologist has put him on LHRH Agonist - Bicalutamide.

Those are the two main elements of hormonal blockade therapy for advanced cases, and there is some evidence (especially a recent multi-institutional Japanese study of hormonal therapy) that orchiectomy has even better results than medical deprivation of testicular testosterone (in the US, with drugs like Lupron, Zoladex, Viadur, Trelstar and recently degarelix). (I've been on and off Lupron - now on since September 2008 - since December 1999.) For a case with characteristics like your dad's case, continuous hormonal blockade, which orchiectomy accomplishes, is normally considered best.

Bicalutamide, available by that name as a generic drug now in the US but also available as the much higher priced brand named drug Casodex, is very important in blocking the docking sites for the androgen growth fuel on the cancer cells. Dosage is important, as more advanced cancer, like your dad's, means more docking sites on the cancer cell surfaces. In the US, the leading experts in hormonal therapy whom I follow as a patient would recommend 150 mg of the drug for a patient with metastases, like your dad. (I've always been on just one pill, a 50 mg dose; I've never had clear evidence of metastases, though virtually all doctors I've seen have been confident that I had micrometastases. I have done very well on triple blockade therapy using a bicalutamide dose of 50 mg, driving my PSA twice to <0.01, and then taking a vacation from the heavy duty drugs.) Bicalutamide will also go a long way in taking care of any surge in production of testosterone via the adrenal glands as the body recognizes the shortage and tries to make up for it.


He has also recommended bone density test - dexascan. We are seeing the urologist at the end of the month at which time we will be taking the dexa scan results

It's very important to assess Bone Mineral Density (BMD) and monitor it when a patient is on hormonal blockade therapy. In the US, the DEXA scan is the usual method, but some expert prostate cancer doctors strongly prefer a quantitative CT scan (qCT), especially if the patient has arthritis or calcification of the blood vessels, both of which can fool the DEXA scan into reporting overly favorable results. I believe I am free of both conditions, and I've had virtually annual DEXA scans since 2000 that have seemed to be valid and most helpful in managing my case.

If possible, I strongly recommend you obtain a copy of the book "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum and Donna Pogliano (2nd edition 2005, highly similar to the first edition but with a handful of added brief sections. It is outstanding on bone issues, including the scans, and it is also outstanding on hormonal blockade therapy, which it refers to by the term more commonly used in medical papers, "Androgen Deprivation Therapy" (ADT).

The Primer gives excellent information about the role of bone density drugs and details about them. For metastatic patients like your dad, in the US the drug Zometa would most likely be the choice. These drugs are supported by calcium and vitamin D3 supplementation, or by prescription vitamin D. By the way, a test of your dad's vitamin D level - known as the "25-hydroxy vitamin D" test - would also probably be helpful; many of us prostate cancer patients are also deficient in vitamin D.


along with the new PSA score with us.

With just a little luck, your dad's PSA score should plunge sharply. The therapy is almost certain to knock the cancer backward.

We saw many refrences to Triple Hormone therapy on this board.

The third element of triple therapy is finasteride, formerly known as Proscar but now available generically, or dutasteride, now available in the US only under the brand name Avodart. These drugs have several roles, but the main role is shutting off almost all of the conversion of testosterone into the much more powerful fuel DHT (dihydrotestosterone). Therefore, even if the body is still producing some testosterone and if there are some unblocked docking cites (known as androgen receptors), at least only the fuel with much lower potency will be getting to the dock. These drugs also quite substantially reduce blood flow to the prostate cancer tumors, which is also important. For most men, Avodart appears to be the better of the two drugs because it shuts down more of the conversion, more than 90% of it. A few men have a genetic problem with Avodart, so if the DHT level is not brought way down, then a shift to Avodart would be wise. (I have stuck with finasteride, two pills daily now, for nine years because my program has been so successful. Someday I may switch.)

I'm personally convinced that triple blockade is vitally important for men with challenging, advanced cases. Unfortunately, few medical papers have been published about the three drug combination, but there are several important pieces of evidence that it makes sense. Among those pieces are the trials of finasteride and Avodart to prevent prostate cancer, both of which demonstrated effectiveness against the disease by reducing incidence by around 25% to 30%. An early concern regarding high risk disease has now been virtually dismissed by the experts.

Some experts like to also check the prolactin level and add a fourth blockade drug, Dostinex. I am less familiar with that, and there may be some problems that make that approach a second or third choice if success is not achieved. That's something I need to learn more about.


We look forward to feedback from you all to give us some thoughts on that and other treatment options. Thanks, Goel family from New Delhi.

The other book that I highly recommend is "Beating Prostate Cancer: Hormonal Therapy & Diet" by Dr. Charles Myers, MD, and eminent medical oncologist specializing in prostate cancer, and himself a patient with a challenging case of metastatic prostate cancer whose cancer is now undetectable using an ultrasensitive PSA test (less than 0.01). In addition to reviewing the nutritional and lifestyle (exercise, stress reduction) tactics that support treatment and make life better, he outlines other drugs, such as leukine, and "second line" hormonal therapy tactics. He also advocates an approach I believe in: moving quickly to a more aggressive therapy if progress stagnates or is reversed with the current therapy.

Publications by the Prostate Cancer Research Institute (PCRI), a non-profit organization, are also most helpful.

I hope that your dad will find a therapy that works what will seem like a miracle! I wish you and your family the best.

Jim [/
QUOTE]

 
Old 10-07-2009, 09:38 AM   #4
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Re: Need suggestions for Satge IV PC

Hi again Goel Family,

You're welcome. We are all here to help heach other, and I'm glad to "pay forward" for some of the key help I have received in the past and am still receiving. I'll put some comments in green in an excerpt of your previous post. Jim


[QUOTE=Goelfamily;4094540]... I really liked your Summary of the PC Convention that you attended. Hope Dad can attend it next year.

I hope he can too. I have now been to five of them, skipping the previous two. Some years they have special sessions for just the patients with very challenging cases like your father to interact with a panel of highly expert doctors. Even when they do not do that, there are always "Meet the Speaker" sessions after talks and "Meet the Expert" sessions where we can ask questions. I've also had some great conversations with experts in the hallways.

Our Urologist is very nice and competent however we plan to discuss triple blockage with him since that is something he has not mentioned to us. We will also talk to him about the other tests that you have suggested. I wonder if Dad should also use intermitent therapy.

Even though your dad has had an orchiectomy, which permanently shuts off his own ability to produce testosterone in the testes, he could conceivably go on intermittent therapy and recover a normal level of testosterone by using testosterone supplementation. I think that's unlikely to work in his case, as a first requirement for using supplemental testosterone is that any current metastases become undetectable. A few years ago, using supplemental testosterone in any prostate cancer patient would have been unthinkable. But things have changed based on research, and for some of us, that can be done with a high degree of safety. I've heard that the former Leibowitz/Tucker/Roundy team will be publishing a paper in a leading journal about that in the fairly near future.

Based on the experts who are highly experienced in advanced use of hormonal blockade whom I follow closely, a patient should not go off the heavy duty drugs (or reverse the effects of orchiectomy with testosterone supplementation and stop the Casodex in your dad's case) until he has been able to drive his PSA down to a very low level. The Strum/Scholz/Lam group (now the Scholz/Lam practice with Dr. Strum semi-retired, probably one of the two practices with the most experience with double and triple blockade - the former Leibowitz/Tucker practice being the other, uses the PSA threshold of 0.05 as a test: if a patient can get below that on triple blockade, especially if he can get below it and stay below it for a year, they then consider intermittent blockade reasonable.

However, Dr. Charles "Snuffy" Myers, another of the few leading experts in hormonal blockade (used it himself for part of his treatment for 19 months starting in 1999), now likes to see triple blockade patients drive their PSA down to less than 0.01 before going on intermittent therapy. (I have done that twice and should be below 0.05 on my next test next month.) I haven't followed the Strum/Scholz/Lam group closely enough in the past couple of years to know whether they now would be more comfortable with <0.01 as the threshold.

It may be very difficult for your father to drop his PSA that low. As Dr. Myers explains in his book, when a triple blockade patient sees his PSA decline leveling off or even reversing and changing to an increasing pattern, he strongly believes in changing the mix of drugs with the goal of restoring that decline in PSA. As an example, one of his star patients is a NASA engineer (whose family was from India, by the way) who had failed hormonal therapy, had failed several second line hormonal therapies, and had failed to control his cancer with chemotherapy. However, he had a spectacular response when the drug Leukine was added. Not only did that drug bring his cancer under great control, but he was able to stop the chemo and the hormonal therapy. I have met him and his wife, and he has been doing fine for the past several years. Really awesome, amazing and inspiring stuff!


He is currently on only 100 mg Bicalutamide.

Testing for PSA, testosterone, and DHT will be able to give an excellent view whether 100 mg is enough. I suspect that 150 will be needed; I have never heard of more than that being used. As laymen, we tend to think of diagrams showing how the drugs work on just one cell, often showing just one receptor (docking site) being blocked. In reality, millions of cells are involved, and many of them have more than a million of various receptors each, many of which are androgen receptors that matter to prostate cancer. When we have prostate cancer and are taking drugs like bicalutamide, there is a virtual Star Wars war going on inside us at all times. Therefore, we need to make sure we have enough troops to win the war.

When do you think we should seee an Oncologist? We have met a couple here already and were not very impressed.

In the US doctors who are "medical oncologists" are usually the best suited for treating cases of advanced prostate cancer where drugs are an important part of treatment. I'm not familiar with the medical set-up in India, so it may not be the same in New Delhi. It is also helpful to find a doctor who treats many prostate cancer patients if possible. With all that said, I have not done that myself. With the key aid of my urologists team, I found a general medical oncologist who was highly experienced in treating all cancer patients but who did not specialize in prostate cancer. He was clearly talented and thoughtfully open-minded. I worked with him to explain the triple therapy that I desired, and he agreed to manage that for me. He has learned some things from me; for instance, I was the first patient in his practice to be tested for the vitamin D level. But I have also learned from him and followed his advice, at a couple of points when he took a more conservative view than the leading-edge experts, a view that later has appeared to prove wise for me. So far, I'm impressed with what you have shared about your dad's doctor's approach.

We have already ordred Dr. Myers' book after reading about it on your previous posts and PC Forum. I live in Atlanta and am visiting here. My husband is mailing the book to us.

Be sure to get the Primer too. Both are highly informative and encouraging.

In your response below you have also talked about going for more aggressive therapy if our dad responds well to the current therapy.

Actually, if he responds very well, ideally driving his PSA to <0.01, he would not need more aggressive therapy.

What would be defined as 'more agressive'?

Dr. Myers covers it well in his book. I have the original edition, so the page numbering may not be the same in the one you will see. On the third page of the second chapter (page 25) - "What Is A Complete Remission" - he writes: "My current program for newly diagnosed men with metastatic cancer is to first try to induce a complete remission with triple hormonal blockade using LHRH-agonists, such as Lupron, Trelstar, Eligard or Zoladex [text written before the FDA's approval of degarelix, an LHRH-antagonist], combined with Casodex [bicalutamide] and either Proscar [finasteride] or Avodart [dutasteride generically, but only available under the trade name in the US]. If the patient does not enter a complete remission with this program, I use second line hormonal therapy with agents such as ketoconazole [with hydrocortisone] transdermal estrogen, or aminoglutethimide.

Taxotere-based chemotherapy is only initiated after second line hormonal therapy is no longer causing the PSA to decline."

He later addresses drugs like Leukine. No doubt he will be adding Provenge to the list when it is approved by the FDA, which should be within the next six months. (Provenge will almost surely be very expensive in the US, with earlier estimates ranging from $40,000 to $60,000 for a course of three epheresis treatments.)


How do we know Dad is responding well - PSA score and bone scans?

A complete remission is "no evidence of disease". PSA would usually be the key element, so "no evidence" with today's powerful ultrasensitive tests would be a PSA of <0.01. (Even lower PSAs can be measured, but it is not a practical approach in today's clinical and normal laboratory settings, and there is no research evidence I know of that a lower result is clinically meaningful.) A bone scan would also be appropriate, but bone responds fairly slowly to cancer developments, so a successful scan could lag behind success against the cancer. Dr. Myers also discusses the concepts of "durable complete remission" and "un-maintained complete remission" (p. 23 in my edition).

Thank you so much for your help! Hopefully support like this will allow us to have a 10 year succcess story like yours! Take care. Goel Family.
...

I'm sure you will greatly enjoy the first chapter of Dr. Myers book - about optimism, and the section on amazing success for several men with PSAs in the thousands.

Please feel free to continue to ask questions and let all of us know how your dad is doing.

Take care,

Jim

 
Old 10-07-2009, 09:31 PM   #5
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Re: Need suggestions for Stage IV PC

Hi agian,
Just a few more follow up questions.
1. Speaking of changing the mix of drugs, what does Leukine do? It is not a part of Triple blockage is it?
2. How do we test the testosterone and DHT levels? Is it a test in completely seprate from PSA? Should it be done each time we get PSA done?
3.I agree getting 'enough troops to win the war; is critical and would hate to have Dad get only 100 mg when 150 might be warrented. Especially if as per Dr. Myers the goal is to go in complete remission. Could it be that we start with 100 go upto 150 mg and then go back down?
4. My brother, sister and I are going t see a uro-oncologist today for a consult only. We feel much more prepared to talk to him now that we have recieved this information from you.
4.I will ask my husband to get the Primer as well.

Thanks again for all your help! We will keep you posted...Goel Family.

 
Old 10-31-2009, 04:45 AM   #6
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Re: Need suggestions for Stage IV PC

hi everyone..
we just got dad's first PSA result after a month of orchiectomy.
total PSA 24.89
free PSA 1.66
just to remind, dad's PSA before surgery was '1780'

what are your views regarding our results?

 
Old 11-20-2009, 04:11 PM   #7
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Re: Need suggestions for Stage IV PC

Hi,

I have actually met someone a couple of yrs back who got healed from cancer by drinking ccarrot juice,wheatgrass juice and entirely raw vegetable juice diet.Please search on the internet for carrot juice cancer.There is no harm in trying that along with the rest of the medications.Also I ready about naturopathic clinic in bombay..In any case I would recommend trying the carrot juice veggie diet and also try seeing a good naturopath..I somehow am a firm believer that it would help.

God bless

 
Old 11-24-2009, 08:43 AM   #8
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Re: Need suggestions for Stage IV PC

Hi to you again,

I'm sorry I somehow overlooked your post #5 on October 8, but I'll add some thoughts now in green and hope they will be useful to you and your dad.


Quote:
Originally Posted by Goelfamily View Post
Hi agian,
Just a few more follow up questions.
1. Speaking of changing the mix of drugs, what does Leukine do?

It is an immune system booster. A surprisingly high percentage of very advanced patients respond to it.

It is not a part of Triple blockage is it?

No. Usually it is tried at some point after triple blockade no longer is able to control the cancer. However, it could be used at any point. I'm not sure whether there have been reports of its use in earlier stage patients. The best known researcher/physician is Dr. Eric Small from the UCSF.

2. How do we test the testosterone and DHT levels? Is it a test in completely seprate from PSA?

Yes, they are simply two additional blood tests, and blood for all three (or more tests) can be drawn at the same time.

Should it be done each time we get PSA done?

Probably not, but it depends on the clinical situation. If someone's PSA is dropping sharply or is below 0.05, for example, it's highly likely that testosterone and DHT are very low and where we want them. On the other hand, if PSA stabilizes, it's possible that testosterone and DHT have not been adequately suppressed.

3.I agree getting 'enough troops to win the war; is critical and would hate to have Dad get only 100 mg when 150 might be warrented. Especially if as per Dr. Myers the goal is to go in complete remission. Could it be that we start with 100 go upto 150 mg and then go back down?

That makes sense to me, especially if the PSA drops to an extremely low level. However, while the thought of cutting back Casodex as you suggest has crossed my mind before, I've never heard one of the experts talk about that. I would like to know their views.

4. My brother, sister and I are going t see a uro-oncologist today for a consult only. We feel much more prepared to talk to him now that we have recieved this information from you.

I'm very glad I could help.

4.I will ask my husband to get the Primer as well.

The section on androgen deprivation therapy is the best I've found in any book. In fact, it is head, shoulders and even waist above what most of the other books say about it.

Thanks again for all your help! We will keep you posted...Goel Family.
You're welcome. I'll look at your more recent post now.


Take care,

Jim

 
Old 11-24-2009, 09:00 AM   #9
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Re: Need suggestions for Stage IV PC

Hi and congratulations to you, your family and your dad on his awsome news!

Quote:
Originally Posted by Goelfamily View Post
hi everyone..
we just got dad's first PSA result after a month of orchiectomy.
total PSA 24.89
free PSA 1.66
just to remind, dad's PSA before surgery was '1780'

what are your views regarding our results?
It would still be very worthwhile to have his testosterone and DHT checked, and probably in my layman's opinion to continue the equivalent of Casodex, and to add Avodart or finasteride. As wonderful as that result of 24.89 is, if possible the PSA should drop to below 0.05, and that probably will not be possible without the additional drugs. But what an awesome plunge in PSA!

Is your dad on any bisphosphonate therapy? In view of his metastases, the experts I follow would probably want him on Zometa (with calcium and vitamin D3 supplementation). Typically very frequent dosing is used for patients with mets, such as every three or four weeks. However, the well-known Scholz-Lam practice in Marina del Rey near LA uses a schedule not more frequent than every three months, and they reported virtually no incidence of the "osteonecrosis of the jaw" side effect that troubles some patients on the intravenous bisphosphonates (including especially Zometa), particularly with longer term use.

Take care,

Jim

 
Old 11-24-2009, 10:53 AM   #10
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Re: Need suggestions for Stage IV PC

Hi abadgi,

Welcome to the board! I'll add some thoughts in green to your post of 11/20.


Quote:
Originally Posted by abadgi View Post
Hi,

I have actually met someone a couple of yrs back who got healed from cancer by drinking ccarrot juice,wheatgrass juice and entirely raw vegetable juice diet.

I cannot say for certain for other cancers than prostate cancer, but prostate cancer researchers have not shown much interest in carrot juice, wheatgrass juice and entirely raw vegetable juice. That's not proof that these items are worthless for prostate cancer, but it does raise doubt to a high level. That's because researchers worldwide are hungry for personal success in finding foods, lifestyle practices, and medications that will work against cancer; they are eager to be among the first to find something that works. Therefore, if there is little evidence of research interest, it's a strong indicator that there is not much worth to the claim. Here's what I found about the three items you mentioned.

What I did: searched www.pubmed.gov, a site we can discuss on this board because it is Government sponsored.

For wheatgrass, I searched for (without the quotes) " prostate cancer AND wheatgrass ", yielding no hits. I then searched for " prostate cancer AND wheat grass ", separating wheat and grass, and got just three hits. The first was for a paper published in 2000, the second for a paper in 2003, and the third was on a "biomarker" paper published in 2009 - not a paper on the effect of wheat grass, but related to how you can measure if it has been consumed.

For " prostate cancer AND carrot juice " I got six hits, but none included the customary brief descriptions known as "abstracts", and that always lessens my interest in the document as it often signifies that the document is not a substantial report. More to the point, 5 of the 6 hits related to a 2001 article - a long time ago, and the sixth was a newsletter account relating to the interest in carrot juice and prostate cancer but not a fresh report of research.

I checked for " prostate cancer AND raw vegetable juice ", which would have included "extremely raw vegetable juice, and got no hits at all!

In very sharp contrast, try this search for yourself about lycopene, which is chiefly found in tomatoes, and could be an ingredient in that juice: " prostate cancer AND lycopene ". I just did that and got 295 hits. To confirm there was a lot of recent activity, I did an "advanced search" for only publications in the past year (11/24/2008 to present) and with these additional limits: only items with abstracts, Humans, Male. I still got twelve hits, even with all those limits. You can see how different this looks compared to the research on wheat grass or carrot juice. You'll find the same thing - many reports, usually including recent reports - for any of the other major contenders for nutritional tactics against prostate cancer.

Unfortunately , you are not alone in running into someone who is enthusiastic about some strange remedy, believing that it cured cancer for them, when it very likely did no such thing . I remember one man who claimed he was cured of cancer because his PSA plunged after he started a juicing or some other poorly researched program. From what he said, it seemed highly likely that he had had a prostate infection but not prostate cancer (he never had had a biopsy (or a medical degree), but rather he had "diagnosed" himself), and that he did not realize that PSA is affected by much more than just prostate cancer. It's very likely he was "cured" of prostate cancer he never had! I've also encountered men who credit a strange supplement with curing an actually diagnosed cancer that was also treated with standard surgery, radiation, or cryosurgery. For some reason, they ignore the very likely cure by the standard treatment and just focus on the strange supplement.



Please search on the internet for carrot juice cancer.There is no harm in trying that along with the rest of the medications.Also I ready about naturopathic clinic in bombay..In any case I would recommend trying the carrot juice veggie diet and also try seeing a good naturopath..I somehow am a firm believer that it would help.

God bless
I like your comment that "There is no harm in trying that along with the rest of the medications." That's probably true for many unusual and unproven approaches as long as it does not distract the patient from approaches where there is substantial, promising evidence. Also, there is a chance that a few of these unusual, strange sounding approaches will actually prove in time to work. One such approach is quality pomegranate juice for prostate cancer; preliminary research had exciting results, yet there was almost no research on pomegranate juice and prostate cancer a half dozen years ago or so.

Take care,

Jim

 
Old 12-01-2009, 06:52 AM   #11
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Re: Need suggestions for Stage IV PC

hi jim
as always your posts were extremely helpful and encouraging

here is the latest update - dad's PSA after 1 month and 3 weeks of surgery came down from 1780 to 6.4
testing for testosterone levels and DHT is not very popular in India i'll try to find out where these tests are conducted.

in the meantime dad is continuing triple blockade therapy with Casodex [50mg] and Avodart along with some dietary changes such as pomegrenate juice, soyabean and lycopene tablets everyday.

our doctor has started with bisphosphonate therapy [every 4 weeks], calcium and vitamin D.

he has asked us to get a CAT Scan done in 3 months to check for lymph node involvement. what are your views regarding this?

i think thats it for now.
keep up the good work you are doing
goelfamily

 
Old 12-01-2009, 06:54 PM   #12
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Re: Need suggestions for Stage IV PC

Hi Goelfamily,

Congratulations on your dad's most excellent news! I'll insert some comments in green.

Quote:
Originally Posted by Goelfamily View Post
hi jim
as always your posts were extremely helpful and encouraging

I'm always glad to help, and I know I speak for others on the board.

here is the latest update - dad's PSA after 1 month and 3 weeks of surgery came down from 1780 to 6.4

I have seen results like this before when hormonal therapy is well done, but seeing that result is still incredibly awesome! I don't think I'll ever get used to such dramatic responses! Wow!

testing for testosterone levels and DHT is not very popular in India i'll try to find out where these tests are conducted.

Your dad's great result to date is strong evidence that both his testosterone and DHT levels are low, but it's worth extra effort to make sure. Both tests simply involve drawing blood as in a PSA test, and no doubt, if necessary, the samples could be prepared for shipping to another country if necessary, though I'm confident you will find a lab in India that could do the work. Dr. Redy's pharmaceutical company in India might be able to give you some leads to local sources, and of course they have a North American branch, which could make contact easier for you. They are one of the suppliers of generic finasteride, which mainly reduces conversion of DHT, so it seems reasonable that they would know about testing for DHT in India. I just read in Dr. Myers' latest Prostate Forum newsletter, which arrived today, that his standard practice is to check his hormonal therapy patients for DHT because it is not rare for testosterone to be extremely low while DHT is still normal. As he notes, since DHT is generally considered ten times as powerful a fuel for prostate cancer as testosterone, a normal level of DHT can wreck a hormonal blockade program if not recognized and reduced.

in the meantime dad is continuing triple blockade therapy with Casodex [50mg] and Avodart

I am so glad your dad is now on that program. If he continues to see his PSA drop, then the 50 mg of Casodex could be enough. If his PSA levels off or even starts rising, one tactic could be to increase the dose of Casodex to 100 or 150, the latter being a rather common dose for men with metastases. Dr. Myers wrote about that too in the current newsletter issue. In fact, he mentioned that sometimes he'll prescribe a dose of 200 mg, or even 250 mg; that's the first time I've heard of a doctor using 200 mg or 250 mg. He cites several medical references, and at least one probably covers those higher doses. However, it is possible - not that uncommon - for the cancer to mutate so that it can start using Casodex as fuel, which of course needs to be recognized soon. There are other drugs to use instead of Casodex if that happens. I believe that it usually takes a good while on the drug before that occurs, but I'm not that sure. It's something to be aware of.

While few patients begin to suffer liver injury due to Casodex, Dr. Myers writes in the same article that he regularly puts men on the drug ursodiol when he puts them on Casodex, as a preventive measure. He has even observed that ursodiol can "reverse liver toxicity due to casodex." He uses 300 mg of ursodiol two or three times a day. I had regular liver function tests during the first several months of my first round of blockade that used Casodex, but it became clear that I tolerate it well. I have never taken ursodiol.


along with some dietary changes such as pomegrenate juice, soyabean and lycopene tablets everyday.

All sound good to me!

our doctor has started with bisphosphonate therapy [every 4 weeks], calcium and vitamin D.

Do you know the drug used? I suspect it is an equivalent of Zometa (zoledronic acid). Was your dad cautioned about dental work while taking the drug, if it is zoledronic acid? That's important because of a rare but potentially serious side effect known as osteonecrosis of the jaw. That drug is remarkably powerful. It should help a lot.

he has asked us to get a CAT Scan done in 3 months to check for lymph node involvement. what are your views regarding this?

With your dad's extremely high initial PSA, using a CAT scan for initial staging is a smart thing to do, and I suspect that's how his metastases were found, though I'm guessing. It makes sense to use a CAT scan again to see what changes have occurred. It's quite possible that some of the earlier mets may have shrunk or even disappeared. I've heard and read of that happening quite often when men have responses like your dad's. It's also possible that the CAT scan would show that the mets have grown and increased in number, but in my layman's view that seems unlikely in view of the steep plunge in your father's PSA.

i think thats it for now.
keep up the good work you are doing
goelfamily
May your dad keep up those wonderful reports! I'm sure his results are inspiring many readers on the board.

Take care,

Jim

 
Old 12-03-2009, 04:49 AM   #13
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Re: Need suggestions for Stage IV PC

Hi Jim

I was not aware about casodex' effect on liver function. Dad's liver function test one month after orchiectomy and starting of casodex showed slight elevation in bilirubin level [1.23 normal being less then 1] Is it something to be concerned about? All other parameters were within normal limits.

Though increase is not much and currently he is taking only 50 mg but i certainly feel its very important to be aware about all possible side effects.

as for bisphosphonate therapy, he is on monthly tablets of ibandronic acid which belongs to same generic group as zometa.

I am a dental student myself so i know about osteonecrosis of jaw. It usually occurs while patients are on long term i/v bisphosphonates and more importantly as a sequele of any invasive dental procedure [ extractions, implants etc] I will regularly check dad's dental condition to avoid need for any such procedure.

will keep you updated..

take care
with all our best wishes
goelfamily

 
Old 12-03-2009, 07:31 AM   #14
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Re: Need suggestions for Stage IV PC

Hi Goelfamily,

It's always good to hear from you. I'll insert some thoughts in green.
Quote:
Originally Posted by Goelfamily View Post
Hi Jim

I was not aware about casodex' effect on liver function. Dad's liver function test one month after orchiectomy and starting of casodex showed slight elevation in bilirubin level [1.23 normal being less then 1] Is it something to be concerned about? All other parameters were within normal limits.

I wish I knew the details on the liver function test (LFT) results, but I rely on my doctor for that. Maybe someone else on the board knows. I have a battery of tests every two months, and sometimes a few numbers are slightly out of the reference ranges. But my oncologist has rarely said there was any issue, instead saying that everything looks fine. It's definitely worth a follow-up call to check.

Though increase is not much and currently he is taking only 50 mg but i certainly feel its very important to be aware about all possible side effects.

I doubt there is any problem just because the side effect of liver damage is rare, but it is a serious side effect if not caught fairly early, and it's easy to reverse if caught early. While rare, I have a friend in my support group who did experience that side effect. He's fine now. Remember the ursodiol too. That might be a good idea at this time, at least something worth discussing with the doctor. I haven't seen much published about it for men on Casodex or bicalutamide (or flutamide), so it's likely that only the experts are very familiar with it. When that's happened invoving my own case, I try to give the doctor a research paper and comments from experts in advance so he can get up to speed before talking with me. Dr. Myers' recent comments are in his Prostate Forum newsletter, Volume 11, Number 6, page 4, published October 2009. He cites two studies:

Lead author M Kojima on ursodeoxycholic acid published in 2002, and

Lead author C Cicognani on ursodeoxycholic acid published in 1996.


as for bisphosphonate therapy, he is on monthly tablets of ibandronic acid which belongs to same generic group as zometa.

That's the one I'm on - ibandronic acid. I take one tablet monthly of the brand name Boniva version - the one that Sally Fields endorses in TV ads. I really like the convenience, and my DEXA scans indicate it works for my needs. However, this bisphosphonate is much less potent than zoledronic acid - Zometa. On the other hand, it is also barely associated with osteonecrosis of the jaw, as I understand it, in sharp contrast to Zometa.

I am a dental student myself so i know about osteonecrosis of jaw. It usually occurs while patients are on long term i/v bisphosphonates and more importantly as a sequele of any invasive dental procedure [ extractions, implants etc] I will regularly check dad's dental condition to avoid need for any such procedure.

He's really fortunate to have a daughter with your dental background. Searching PubMed at www.pubmed.gov with " ibandronate AND osteonecrosis " just yielded 37 studies of bisphosphonates and ONJ that include ibandronate, but substituting zoledronate for ibandronate resulted in 248 hits. I read enough to confirm my impressions of the risk for the two bisphosphonates. The decision whether to go with a milder bisphosphonate or zoledronic acid can be difficult for a patient with mets, especially if the patient has dental issues. If it were me, especially if I had good dental health, I believe I would go with zoledronic acid if I had bone mets or other mets that were not responding well to hormonal and other therapy. Even if we choose not to use Zometa now, I find it very reassuring to know that it is available. Actually, it would not be covered by insurance for me in my present circumstances - meaning no detectable mets, and that's just fine with me.

will keep you updated..

take care
with all our best wishes
goelfamily

You take care too.

Jim

 
Old 02-04-2010, 04:50 AM   #15
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Re: Need suggestions for Stage IV PC

hello everyone...
thought i should update everyone about dad's latest results.
his PSA level 4 months post-op [after orchiectomy] is 1.12

he was diagnosed 4 months back with a PSA level of 1780
gleason 8 and metastasis to pelvic bone. his lymph node was also enlarged but we dont know if it was metastatic enlargement.

we are thinking if we should get CT Scan or bone scan to check if his metastasis has improved.

best wishes to everyone on board
goel family

Last edited by Goelf; 02-04-2010 at 04:51 AM.

 
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