16th May 2008
[COLOR="DarkGreen"]I'm inserting some comments in green. I'm in Fairfax County on the southwestern side outside the Beltway. Jim
[QUOTE=MGgator67;3569142]... I am not excluding John Hopkins, but I called there and it seems, to me, that they are not too interested in taking anyone that has been treated eslewhere.
[COLOR="darkgreen"]Johns Hopkins is arguably the best in prostate cancer surgery and known to be excellent in so many areas, but personally I'm convinced they are lagging in expertise in hormonal therapy, which is probably going to continue to be one key part of your strategy. That's not just my personal opinion, though I had a consultation there with a leading chemo expert back in 2000 that left me unimpressed with JHU expertise in advanced hormonal blockade, so I have some personal information to back my judgment. JHU is known for not using hormonal blockade early to counter recurrences after surgery. That is beneficial in providing clear results of what happens to recurrences after surgery that are not countered early, but it seems to me that it is not beneficial for the recurring patient.
...got a little confused that my uro started me back on casodex (sp) right after we got the 0.9 psa, so I am not sure if the drop from 0.9 to 0.1 would have happened with out casodex or not?
[COLOR="darkgreen"]PSA might have dropped to .1 without the Casodex, but to me adding Casodex makes a lot of sense.
Anyone has any idea why he took that approach?
[COLOR="darkgreen"]The adrenal glands indirectly produce some testosterone, and they sometimes ramp up production, which can reach 40% of normal in a few men, when the body senses that normal testosterone production has been shut down. Casodex blocks the effect of most of the testosterone that remains. The doctor might have wanted to see how you would respond to just the shot before adding Casodex.
About a month ago, I had a Total Body PET CT Scan - Impressions were (1) Normal total body PET CT scan; (2) No findings on this exam suggesting metastatic adenopathy in the pelvis.
[COLOR="darkgreen"]PET CT scans don't work very well at finding prostate cancer unless there is a lot of it, as I understand it. PET scans work better with other cancers, though there is a lot of research going on to improve them for prostate cancer. The finding you had does indicate there isn't a lot of cancer - not enough to show up on the PET, even though you had that ProstaScint that was positive for one node.
Now I am totally confused, uro suggest that harmones have worked well and have skrunked the cancer cell too small to be detected....
[COLOR="darkgreen"]That's possible.
I am not confused about the fact that the cancer is still there but now my doctor is talking about "hitting it with chemo"
[COLOR="darkgreen"]I have a strong bias toward triple hormonal blockade plus a bisphosphonate (and calcium, vitamin D3) because that has worked so well for my own challenging case and because I've been impressed with preliminary research and clinical studies by doctors using that therapy extensively. It makes sense to me to add either finasteride or Avodart so that you are on triple blockade and monitor how you do, with the goal of getting the PSA below .05. However, some leading doctors have been exploring early chemo combined with blockade, and that may turn out to work as well or better, or, of course, not as well. My impression is that the doctors adding chemo for a case that is not challenging yet are not leaders in hormonal therapy, but I'm a layman and may be wrong about that. If I'm right, it could mean that the doctors do not appreciate the impact that triple blockade can achieve.
not sure of the methodology but he says not the traditional form of chemo, this is different and does not have the same side effects as traditional.
[COLOR="darkgreen"]I hope you will get some first hand responses from someone who has had such supportive chemo. My impression is that such chemo is considerably milder than what we anticipate and that there are ways to counter some of the side effects.
Well I am going to see him on this Thursday, I am not going to agree to any form of Chemo just yet, I will take my second harmone injection but this is it for now until I can get a little smarter. Now I am ready to go talk with some other prostate cancer professionals, so if any of you guys are willing to share your doctors' name or the name of the Cancer Center I would greatly appreciate the information and your opinion too! Thanks!
[COLOR="darkgreen"]I'm personally convinced that Dr. Charles Myers, near Charlottesville, is the leading expert in our region (and in the world, for that matter). He is known for his outstanding expertise in prostate cancer and for considering the total picture of the patient's health. As you might expect, that kind of expertise and attention does cost more.
I don't know of another doctor in our area who is thoroughly familiar with using triple hormonal blockade therapy. There are a number of medical oncologists familiar with combined hormonal blockade, such as Nancy Dawson, one of those who is well known, who practices at one of the Baltimore hospitals. Of course you might not require a full-blown hormonal therapy assault and might do very well with a more conventional approach. There are many medical oncologists in the area with expertise in that kind of approach.
My own oncologist is a general oncologist rather than a specialist in prostate cancer, but he is open minded, talented and experienced, and we have worked together well on the triple blockade program I wanted to follow. There are other doctors in the area who are also willing to manage triple blockade programs but who do not have their own independent expertise with triple blockade.
I hope you find someone who will be able to work well with you. Take care,
Jim
[QUOTE=MGgator67;3569142]... I am not excluding John Hopkins, but I called there and it seems, to me, that they are not too interested in taking anyone that has been treated eslewhere.
[COLOR="darkgreen"]Johns Hopkins is arguably the best in prostate cancer surgery and known to be excellent in so many areas, but personally I'm convinced they are lagging in expertise in hormonal therapy, which is probably going to continue to be one key part of your strategy. That's not just my personal opinion, though I had a consultation there with a leading chemo expert back in 2000 that left me unimpressed with JHU expertise in advanced hormonal blockade, so I have some personal information to back my judgment. JHU is known for not using hormonal blockade early to counter recurrences after surgery. That is beneficial in providing clear results of what happens to recurrences after surgery that are not countered early, but it seems to me that it is not beneficial for the recurring patient.
...got a little confused that my uro started me back on casodex (sp) right after we got the 0.9 psa, so I am not sure if the drop from 0.9 to 0.1 would have happened with out casodex or not?
[COLOR="darkgreen"]PSA might have dropped to .1 without the Casodex, but to me adding Casodex makes a lot of sense.
Anyone has any idea why he took that approach?
[COLOR="darkgreen"]The adrenal glands indirectly produce some testosterone, and they sometimes ramp up production, which can reach 40% of normal in a few men, when the body senses that normal testosterone production has been shut down. Casodex blocks the effect of most of the testosterone that remains. The doctor might have wanted to see how you would respond to just the shot before adding Casodex.
About a month ago, I had a Total Body PET CT Scan - Impressions were (1) Normal total body PET CT scan; (2) No findings on this exam suggesting metastatic adenopathy in the pelvis.
[COLOR="darkgreen"]PET CT scans don't work very well at finding prostate cancer unless there is a lot of it, as I understand it. PET scans work better with other cancers, though there is a lot of research going on to improve them for prostate cancer. The finding you had does indicate there isn't a lot of cancer - not enough to show up on the PET, even though you had that ProstaScint that was positive for one node.
Now I am totally confused, uro suggest that harmones have worked well and have skrunked the cancer cell too small to be detected....
[COLOR="darkgreen"]That's possible.
I am not confused about the fact that the cancer is still there but now my doctor is talking about "hitting it with chemo"
[COLOR="darkgreen"]I have a strong bias toward triple hormonal blockade plus a bisphosphonate (and calcium, vitamin D3) because that has worked so well for my own challenging case and because I've been impressed with preliminary research and clinical studies by doctors using that therapy extensively. It makes sense to me to add either finasteride or Avodart so that you are on triple blockade and monitor how you do, with the goal of getting the PSA below .05. However, some leading doctors have been exploring early chemo combined with blockade, and that may turn out to work as well or better, or, of course, not as well. My impression is that the doctors adding chemo for a case that is not challenging yet are not leaders in hormonal therapy, but I'm a layman and may be wrong about that. If I'm right, it could mean that the doctors do not appreciate the impact that triple blockade can achieve.
not sure of the methodology but he says not the traditional form of chemo, this is different and does not have the same side effects as traditional.
[COLOR="darkgreen"]I hope you will get some first hand responses from someone who has had such supportive chemo. My impression is that such chemo is considerably milder than what we anticipate and that there are ways to counter some of the side effects.
Well I am going to see him on this Thursday, I am not going to agree to any form of Chemo just yet, I will take my second harmone injection but this is it for now until I can get a little smarter. Now I am ready to go talk with some other prostate cancer professionals, so if any of you guys are willing to share your doctors' name or the name of the Cancer Center I would greatly appreciate the information and your opinion too! Thanks!
[COLOR="darkgreen"]I'm personally convinced that Dr. Charles Myers, near Charlottesville, is the leading expert in our region (and in the world, for that matter). He is known for his outstanding expertise in prostate cancer and for considering the total picture of the patient's health. As you might expect, that kind of expertise and attention does cost more.
I don't know of another doctor in our area who is thoroughly familiar with using triple hormonal blockade therapy. There are a number of medical oncologists familiar with combined hormonal blockade, such as Nancy Dawson, one of those who is well known, who practices at one of the Baltimore hospitals. Of course you might not require a full-blown hormonal therapy assault and might do very well with a more conventional approach. There are many medical oncologists in the area with expertise in that kind of approach.
My own oncologist is a general oncologist rather than a specialist in prostate cancer, but he is open minded, talented and experienced, and we have worked together well on the triple blockade program I wanted to follow. There are other doctors in the area who are also willing to manage triple blockade programs but who do not have their own independent expertise with triple blockade.
I hope you find someone who will be able to work well with you. Take care,
Jim