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    Old 04-29-2009, 07:15 PM   #1
    Johnracer46
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    6 months since advanced prostate diagnosis

    Hi everyone,
    I was diagnosed October 2008 at 45 years with advanced prostate cancer metastisized to the bone, rectal tumor, lymph nodes and it was advanced beyond local area. With having such a young family...we didn't wait to see what happens with Lupron therapy...instead we followed our gut for a second opinion at MD Anderson Houston, TX. Our gut was right...we are certainly on the right path with our team in Houston. After our November visit...I was put on Zometa...bone builder since the metastisized prostate cancer had moved from pelvic to all over the skeleton with exception to legs and arms. I am on a 4 month Lupron shot. And, have needed a one month booster Lupron shot to get my testosterone level below 50. I was also put on Casodex which helped lower my PSA from 98 down to 14.6. I was thrilled to see the numbers continue to drop down to 3.9 and testosterone was hovering around 49. And, then the progression began going up. Currently, PSA is 24.6 and Testosterone jumped up to 76. So, I took another Lupron booster and started back up on Casodex. I see results on May 7th and visit MDA on May 18th. I am seeing them every 3 months. I talk with them every month regarding the local blood results and action steps to take. Original diagnosis was discovered through high PSA that urologist believed was infection of prostate with PSA at 38...by the time it was rechecked it was 98 in 6 week timeframe. The colonoscopy was done due to symptoms that resulted from rectal tumor. That's how prostate cancer was determined based on additional testing from the colon biopsy. Gleason score is usually based on actual prostate biopsy...however, our doctors have said 8 - 10.

    I am doing what I can to beat this thing...for as long as possible...I have taken red meat out of my diet completely along with dairy products. I now have soy milk, eat colorful vegetables and have a salad with chicken or fish for a meal each day. I am completely on the nutritional plan including taking supplements. I no longer drink diet pepsi or drink a beer. I knew the one thing I could control in this fight was what entered my mouth. I think I own almost every key book on prostate cancer and nutrition thanks to my wife. I was told surgery was not an option at this stage. We are waiting to see what dies off after initial treatment...which May 18th should be a telling visit. Then, next steps will be discussed. I was excited to see the newest drug arriving soon. If my numbers don't go back down, then we are anticipating some changing hormone therapy to see what takes if anything. For those of you that started this battle in an advanced stage, any advice that worked for you that I haven't mentioned...would greatly appreciate your thoughts before attending my next visit.

     
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    Old 05-01-2009, 05:56 PM   #2
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    Re: 6 months since advanced prostate diagnosis

    Hi John,

    I'm sorry you have had such a rough introduction to the world of prostate cancer. I'm not sure whether you or the President is facing greater challenges. Still, you've certainly picked a great institution for treatment, and it looks to me that you are taking a clear-eyed, clear-headed look at this thing. I'm inserting some thoughts in green. Jim


    Quote:
    Originally Posted by Johnracer46 View Post
    Hi everyone,
    I was diagnosed October 2008 at 45 years with advanced prostate cancer metastisized to the bone, rectal tumor, lymph nodes and it was advanced beyond local area.

    Based on the way you said the cancer was discovered (below), it appears you did not have pain due to the cancer. Is that the case?

    With having such a young family...we didn't wait to see what happens with Lupron therapy...instead we followed our gut for a second opinion at MD Anderson Houston, TX. Our gut was right...we are certainly on the right path with our team in Houston.

    There are a number of outstanding institutions treating prostate cancer in the US, but I've heard consistently that MD Anderson is one of the top three, along with Memorial Sloan Kettering in New York and Johns Hopkins in Baltimore.

    After our November visit...I was put on Zometa...bone builder since the metastisized prostate cancer had moved from pelvic to all over the skeleton with exception to legs and arms.

    That should be a standard approach. How frequent is the dosing? What did they say about minimizing the risk of osteonecrosis of the jaw?

    I am on a 4 month Lupron shot. And, have needed a one month booster Lupron shot to get my testosterone level below 50.

    It's reassuring to see that they are checking the testosterone (and probably other indicators) and using them to tailor the Lupron to your needs. That's the kind of treatment many of us don't get, but it's what you would expect from MD Anderson.

    I was also put on Casodex which helped lower my PSA from 98 down to 14.6.

    I'm thinking you are on 150 mg per day, rather than 50 or 100, since you have all those mets. Is that right?

    I was thrilled to see the numbers continue to drop down to 3.9 and testosterone was hovering around 49.

    Dr. Charles "Snuffy" Myers, MD, a leading prostate cancer doctor whose opinions and observations I follow closely, is not satisfied when PSA levels off for hormonal blockade patients, and he and other leaders want to see that testosterone get down to below 20 if possible. Based on what you say next, I suspect MD Anderson looks at it the same way. By the way, is Dr. Chris Logothetis handling your case?

    And, then the progression began going up. Currently, PSA is 24.6 and Testosterone jumped up to 76. So, I took another Lupron booster and started back up on Casodex.

    That last comment puzzles me; it looks like you are on the Casodex intermittently. As a now savvy layman with no enrolled medical education, I would expect that the Casodex would be continuous, probably at 150 mg daily. Do you know what Casodex does? Basically, basically it blocks up the cancer cell receptors that need DHT as fuel ("refined" from testosterone) so that DHT cannot be delivered. Even though the Lupron is drastically reducing testosterone, the adrenal glands can still indirectly produce testosterone, and thereby DHT. In some men, the body senses the lack of testosterone and substantially recovers testosterone production; I've heard that in a few men the recovery is as high as 40% of normal. That's one of the main reasons that Casodex is so important.


    I see results on May 7th and visit MDA on May 18th. I am seeing them every 3 months. I talk with them every month regarding the local blood results and action steps to take. Original diagnosis was discovered through high PSA that urologist believed was infection of prostate with PSA at 38...by the time it was rechecked it was 98 in 6 week timeframe. The colonoscopy was done due to symptoms that resulted from rectal tumor. That's how prostate cancer was determined based on additional testing from the colon biopsy. Gleason score is usually based on actual prostate biopsy...however, our doctors have said 8 - 10.

    I am doing what I can to beat this thing...for as long as possible...I have taken red meat out of my diet completely along with dairy products. I now have soy milk, eat colorful vegetables and have a salad with chicken or fish for a meal each day. I am completely on the nutritional plan including taking supplements. I no longer drink diet pepsi or drink a beer. I knew the one thing I could control in this fight was what entered my mouth. I think I own almost every key book on prostate cancer and nutrition thanks to my wife.

    Just making sure here: you should definitely have a copy of "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers.

    I was told surgery was not an option at this stage.

    Right. And probably not radiation either, though an argument could be made that it would help "debulk" the disease. I have not had surgery, radiation, cryo or any other such therapy for my own challenging case.

    We are waiting to see what dies off after initial treatment...which May 18th should be a telling visit. Then, next steps will be discussed. I was excited to see the newest drug arriving soon. If my numbers don't go back down, then we are anticipating some changing hormone therapy to see what takes if anything. For those of you that started this battle in an advanced stage, any advice that worked for you that I haven't mentioned...would greatly appreciate your thoughts before attending my next visit.
    One thing difference, I believe, between the MD Anderson approach and that of the leaders I follow is the additional use of either finasteride or more likely Avodart, both in the class known as "5-alpha reductase inhibitors (5-ARI)." These drugs, especially Avodart for most men, do an outstanding job of preventing virtually all conversion of testosterone into DHT. That's important because DHT is a much more potent fuel for prostate cancer. If it were me, I would definitely want Avodart in the drug mix.

    By the way, I think there is a bias at some large cancer centers against using 5-ARI drugs as part of the combined approach, and MD Anderson may be one of them. I know there was a negative bias in the past, and part of the reason is that they did not see much in the way of benefit when the drugs were tested in very late stage patients. However, the doctors I follow are using them as the kid-brother boosters along with other drugs, and they are seeing remarkable success since at least 2000. That kid brother may not be able to take on the bully by himself, but he can help put him in his place as part of a team. The Prostate Cancer Research Institute, a non-profit organization, has published a lot about adding the third drug - the 5-ARI - to the mix.

    My own experience in 2000 fell in this pattern. I was on Lupron and Casodex, and they had brought my PSA down from 113.6 (flare to 125) to below 1.0, but the trend was leveling off around .6. I and my doctor had just added Proscar (now generically available as finasteride; Avodart had not yet been approved), and I went for a second opinion at my doctor's advice to Johns Hopkins. Dr. Mario Eisenberger, a justly renowned medical oncologist, advised me to throw away the rest of the prescription, saying it was worthless. Well, a few weeks later my PSA resumed its downward trend until it was no more detectable at less than 0.01.

    Good luck to you and your wife, and keep your spirits up!

    Jim

     
    Old 05-02-2009, 08:41 AM   #3
    Johnracer46
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    Re: 6 months since advanced prostate diagnosis

    Thanks Jim for your response..
    I'm seeing Dr. John Araujo who's an understudy of Logothetis. He is a PS bone specialist who has trials addressing bone metastasis. The Casodex is a 50mg dose. They are weaning me off Casodex to move me to Finasteride. The immediate plan is if I don't show any drop in PSA on my blood test next Thursday then they will stop Casodex entirely and shift to possibly Proscar / Finasteride on my visit 5-19 to MD.

    I did not have pain that I associated with the cancer...

    The lowest my testosterone has been is 47. I seem to really struggle keeping under 50 which is the mark they want me under. I am considering physically castrating since medically isn't keeping it down and believing this is of utmost importance.
    It has been a lot to understand in a short time frame 10-08 to now. We certainly appreciate your wisdom and sharing your thoughts.

    Take Care and thanks again for your response..
    John A

    Last edited by Johnracer46; 05-02-2009 at 08:52 AM. Reason: sp

     
    Old 05-02-2009, 02:55 PM   #4
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    Re: 6 months since advanced prostate diagnosis

    Hi John,

    You're welcome - we are here to help each other. I'm going to insert some comments in green. Jim


    Quote:
    Originally Posted by Johnracer46 View Post
    Thanks Jim for your response..
    I'm seeing Dr. John Araujo who's an understudy of Logothetis. He is a PS bone specialist who has trials addressing bone metastasis.

    I just checked him in www.pubmed.gov and found one paper in which he was a co-author with Dr. Logothetis. The family must be very active in medical research as there were several hundred hits including different initials.

    The Casodex is a 50mg dose. They are weaning me off Casodex to move me to Finasteride. The immediate plan is if I don't show any drop in PSA on my blood test next Thursday then they will stop Casodex entirely and shift to possibly Proscar / Finasteride on my visit 5-19 to MD.

    That is a really different approach to what I've been following. Unfortunately, there isn't that much in the way of published studies so that it's clear what way is best. To me the evidence is persuasive, but it clearly is not conclusive.

    As I said before, my guys would want the Casodex at 150 mg daily and would keep it up along with Lupron unless an "Androgen Receptor Mutation" (ARM) was indicated by a sudden increase in PSA; ARMs can happen when the cancer cell mutates and starts using the Casodex as fuel. My layman's impression is that it usually takes many, many months for that to happen, if it does at all. In my layman's view, it seems highly unlikely for at least the current and near term in your case.

    We think of cancer cells as like the cells we studied in high school biology - really simple. In fact they are highly complex. Some cells each have over a million (!) receptors, let alone all the other parts. (It's a regular universe inside us if you think of all the cells we each have. Awesome!) If you think of trying to block cancer cell receptors - to get the Casodex to dock there first so the androgen gets shut out, unable to deliver fuel to the cancer, it gets to be a numbers game. If you have a lot of metastatic disease, and therefore a lot more cancer cells, you can see why a higher dose of Casodex might be needed to do the job. You might try running that thinking by your doctor.

    Also, while I have always been on Proscar (finasteride) from about my nine month point in 2000, and on Avodart only briefly along with the Proscar, my guys prefer Avodart unless the patient's response indicates he's one of the few that have genetic difficulty in using Avodart, though they can do well with finasteride. My guys also strongly prefer using all three drugs at once - not holding back. They have some data to indicate that is more effective than one or two drug blockade, but it's not conclusive evidence. Some of it has been published in a major, peer-reviewed journal.

    But I'm not a doctor, and the folks at MD Anderson have an excellent reputation. You might want to at least discuss these ideas with them though.


    I did not have pain that I associated with the cancer...

    That's good. The reason I asked was that men with widespread mets plus pain do not generally do as well as men with widespread mets but without pain.

    The lowest my testosterone has been is 47. I seem to really struggle keeping under 50 which is the mark they want me under.

    That goal of 50 is the conventional wisdom and seems to be widely accepted among doctors and researchers. However, as I probably already mentioned in the earlier post, the doctors I follow are uncomfortable if they cannot get the testosterone below 20. While my PSA is dropping on my third round of intermittent triple blockade, my last testosterone was 28, and I am concerned about that.

    I am considering physically castrating since medically isn't keeping it down and believing this is of utmost importance.

    One question is whether testicular testosterone is already very low with testosterone being indirectly produced by the adrenals as the real problem. If that is so, then surgical castration would not help, or at least would not do the whole job. To me, it makes a whole lot of sense to increase the Casodex to 150 mg per day and see if that drops the testosterone. Another approach is advocated by doctors like the author of the Primer, Dr. Strum: testing, including testing adrenal products, to see what is happening before adjusting therapy. You may be able to find a publication of the Prostate Cancer Research Institute that is excellent in explaining the biology involved, including simple graphics that really put the story in perspective. It's in the October 2001 issue of the Insights newsletter published by PCRI, a non-profit organization.

    I would really lean on the MD Anderson folks to check what's going on with the various androgens and "precursors" (elements that are later processed further, in this case into testosterone), as indicated in the Insights article. I would also want to know why they think weaning you off Casodex would help - what's the thinking there? (Casodex can cause liver problems in rare cases, but I'm confident MD Anderson would do standard liver monitoring to rule that out. There is also at least one drug that can help prevent or rectify such an antiandrogen caused liver problem - Ursodiol, but that's another story.)

    If surgical castration seems best, hopefully after such testing, then at least you may gain some assurance from a recent Japanese study on different kinds of hormonal blockade. Many centers were involved in the study, so they got a lot of data, and it showed that men who were surgically castrated tended to do the best provided that an antiandrogen drug was also used. (They did not use any triple blockade, and I'll bet that would have done best if they had.) I can give you a www.pubmed.gov lead to that article if you want it.


    It has been a lot to understand in a short time frame 10-08 to now. We certainly appreciate your wisdom and sharing your thoughts.

    When I think about wisdom, I'm reminded of a bumper sticker I saw once in Florida: "Good judgement is based on experience. Experience is based on bad judgement." One reason I know a lot is I was not wise enough to get a timely PSA, waiting for my first until I was 56, and then drawing a short straw with a PSA of 113.6. Like the challeng you face, that motivated me and still motivates me to keep learning key details about this disease.

    Take Care and thanks again for your response..
    John A
    You take care too,

    Jim

     
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