True to form I began to research shortly after leaving Dr Cy Fer's office. My initial effort involved googling Casodex. This inquiry produced a dozen or so references with lists of side effects ranging in variety from diarrhea to constitpation and in severity from extreme tiredness to impotence to growth of other tumors and/or to liver disease which in rare instances caused death.
All of us who own a TV know about the drug industry's kitchen sink approach to side effects, but the stark contrast between Dr Fer's side effect prognostication and the internet listings, in my judgement, sounded the alarm with great clarity.
For additional perspective I contacted two of my trusted advisors. I outlined Dr Fer's protocol and provided each with his comments regarding expected outcome and side effects.
The administrator of a popular prostate cancer internet site responded first. I swear, this fine gentleman works twenty four hours a day seven days a week. He is always responsive and always credible. If he doesn't have the answer, he will hook you up with someone who does. Because of his tendency to tell you the unvarnished truth, I have begun to think of him in terms of Iron Mike; his prompt response to my email appears in part as follows:
"Bicalutimide alone may be able to control the progression of your cancer for a considerable period...but it is not curative--and the minimal side effects comment seems a tad on the naive side.
On top of the risk for hot flashes. bicalutimide is associated with a significant risk of gynecomastia.*
There are a variety of ways to prevent or manage this. It is not clear which is best..."
The next morning I received a phone call from UFPTI; my case manager relayed the following message from Dr Gud E, Nuff:
"Casodex alone will cause permanent and painful gynecomastia. It is not a good idea"
In response to all the above I called Dr Fer's office and notified his nurse that I would not be needing a prescription for Casodex. She replied, "I will so advise Dr Fer." Also, rather than cancel my appointment with the second mainstream oncologist, as per an earlier inclination, I decided it may be advantagous to seek his advice and counsel.
*Abnormal development of large mammary glands in men resulting in breast development.
Thursday, November 29, 2012
Saturday, November 24, 2012
Mainstream Oncologist #1
After an hour delay Dr Cy Fer entered the examination room and cordially greeted my wife and me. His casual, besweatered attire suited his amiable, elderly persona; by way of internet I knew him to be 72.
At the outset we spent considerable time reviewing my medical history. Apparently Dr Fer did not have an opportunity to review the detailed background information I submitted as a prerequite to our appointment. Evidently the proposed agenda I prepared also escaped his attention. Even so the agenda proved helpful inasmuch as we referred to it from time to time to facilitate our discussion.
Following a review of my medical history Dr Fer focused on the unfortunate unavailability of any truly good treatment options for those of us with recurrent cancer. "If we fellows only possessed the temperament and organizational inclination of womenfolk, our prospects would be substantionately better." "Look at the progress attained in the treatment of breast cancer," Dr Fer implored. He looked to my wife for affirmation on this point. As a 12 year survivor of breast cancer, she readily and wholeheartedly agreed.
As one part of our dialog Dr Fer opined my recurrent cancer may not be limited to my prostate gland as determined by the choline scan and confirmed by the chemically enhanced, endorectal MRI. He wanted us to realize that " all such scans are subject to error both false negatives and false positives." He reminded us " this is particularly true of newly developed scans no matter how highly touted or aggressively marketed." I was generally aware of the imperfections of all such scans, but it was conclusively persuasive to hear this from a seasoned practitioner.
I knew Dr Fer currently provided followup care for a friend of mine whose treatment plan had been developed by a group in California described by one of my advisors as non-mainstream, called Cancer Patient Advocacy Clinic. This group uses hormone therapy to treat primary prostate cancer followed by a repeat of hormone therapy combined with antiangiogenic cocktail, followed by chemotherapy and so on until the cancer is cured or controlled. My friend underwent this pattern over a two and a half year period and has remained cancer free for eleven years as indicated by a low and stable PSA. I called my friend's experience to Dr Fer's attention and asked him if he thought the CPAC approach may be appropriate for my situation. "Unfortunately", he responded," CPAC does not publish their results, consequently I have no basis for recommending their methods. For your information I have three of CAPC's former patients including your friend whose case I regard as exceptional and two others whose outcomes I regard as unsuccessful."
Just as I began to think all of us had gotten off track irretrievably Dr Fer raised the prospect of a treatment plan. "Casodex", he announced unobtrusively, "a colleague of mine has met with a fair amount of success using this approach. A 50 mg tablet per day," he explained ," may control the progression of your disease for up to ten years with minimal side effects." "About the worst you could expect," he continued "would be hot flashes." "How would you rate my chances for such a favorable outcome?" I asked." "Better than even," he replied. "This regimen," he explained further, "also avoids the loss of muscle mass caused by traditional hormone therapy." "My patients on HT." he advised, "measure the reduction in their strength by the shortened distances of their drives off the tee." Although a non-golfer I do play tennis, consequently Dr Fer's message resonated with me. None of us would-be athletes want our game compromised.
While it is true I did not much care for Dr Fer's overall approach to our interview, I must admit the Casodex solution sounded extremely promising. The 50/50 chance of a favorable longterm outcome with no serious side effects possessed advantages far superior to anything my research had produced to date...or so it seemed. I thanked Dr Fer for his time, told him I would like to think about his proposal and get back to him. He signaled his approval and we parted company.
At the outset we spent considerable time reviewing my medical history. Apparently Dr Fer did not have an opportunity to review the detailed background information I submitted as a prerequite to our appointment. Evidently the proposed agenda I prepared also escaped his attention. Even so the agenda proved helpful inasmuch as we referred to it from time to time to facilitate our discussion.
Following a review of my medical history Dr Fer focused on the unfortunate unavailability of any truly good treatment options for those of us with recurrent cancer. "If we fellows only possessed the temperament and organizational inclination of womenfolk, our prospects would be substantionately better." "Look at the progress attained in the treatment of breast cancer," Dr Fer implored. He looked to my wife for affirmation on this point. As a 12 year survivor of breast cancer, she readily and wholeheartedly agreed.
As one part of our dialog Dr Fer opined my recurrent cancer may not be limited to my prostate gland as determined by the choline scan and confirmed by the chemically enhanced, endorectal MRI. He wanted us to realize that " all such scans are subject to error both false negatives and false positives." He reminded us " this is particularly true of newly developed scans no matter how highly touted or aggressively marketed." I was generally aware of the imperfections of all such scans, but it was conclusively persuasive to hear this from a seasoned practitioner.
I knew Dr Fer currently provided followup care for a friend of mine whose treatment plan had been developed by a group in California described by one of my advisors as non-mainstream, called Cancer Patient Advocacy Clinic. This group uses hormone therapy to treat primary prostate cancer followed by a repeat of hormone therapy combined with antiangiogenic cocktail, followed by chemotherapy and so on until the cancer is cured or controlled. My friend underwent this pattern over a two and a half year period and has remained cancer free for eleven years as indicated by a low and stable PSA. I called my friend's experience to Dr Fer's attention and asked him if he thought the CPAC approach may be appropriate for my situation. "Unfortunately", he responded," CPAC does not publish their results, consequently I have no basis for recommending their methods. For your information I have three of CAPC's former patients including your friend whose case I regard as exceptional and two others whose outcomes I regard as unsuccessful."
Just as I began to think all of us had gotten off track irretrievably Dr Fer raised the prospect of a treatment plan. "Casodex", he announced unobtrusively, "a colleague of mine has met with a fair amount of success using this approach. A 50 mg tablet per day," he explained ," may control the progression of your disease for up to ten years with minimal side effects." "About the worst you could expect," he continued "would be hot flashes." "How would you rate my chances for such a favorable outcome?" I asked." "Better than even," he replied. "This regimen," he explained further, "also avoids the loss of muscle mass caused by traditional hormone therapy." "My patients on HT." he advised, "measure the reduction in their strength by the shortened distances of their drives off the tee." Although a non-golfer I do play tennis, consequently Dr Fer's message resonated with me. None of us would-be athletes want our game compromised.
While it is true I did not much care for Dr Fer's overall approach to our interview, I must admit the Casodex solution sounded extremely promising. The 50/50 chance of a favorable longterm outcome with no serious side effects possessed advantages far superior to anything my research had produced to date...or so it seemed. I thanked Dr Fer for his time, told him I would like to think about his proposal and get back to him. He signaled his approval and we parted company.
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