Three of our classmates, John Shelby, Ed Garton, and Chuck Luton, have died of prostate cancer. It is not an easy death. In the cases of John and Ed, by the time a diagnosis was made, the cancer had already spread widely, and there was little that could be done other than ease the inevitable. They were both gone within months of the diagnosis. Bill Bailey forwarded this note from Chuck Luton on December 21, 2005: Bill, Will try to write a bit so that the PC group may gain some insight into what they hopefully will not have to experience. Please post this for info purposes. I know that they all care and pray for the best -- I am unable to acknowledge each expression thereof. Excuse the typos etc, as I can barely put words to type. Last week, they kept me alive with 20 transfusion lost actual count. Couldn't find platelete match so was down to 4000 (1500000 normal) when they started chemo. Had to give up on the Experimental GVAX. Seems the cancer is now having ball devouring my bone marrow. One last ditch special match search found a donor and got a big platelet bump to 39000, doctors were ecstatic; most had never seen such bump on a last ditch transfusion. They're looking for another donor now -- just heard they found one so will get another transfusion today and another tomorrow. More chemo next week. In sum for PC group info, Had been on 7 year study through MAAMC -- placebo vs finesteride. PSA never greater than 1.9 but had biopsy as part of study. Everybody surprised to find cancer but only Gleason 6. I asked the Army to break study blind to see if I was on finesteride --- was told that study "was a double blind and would not be broken" Surgery in Dec 2002 did not get all the cancer and pathology showed Gleason 9 much to dismay of docs. Very interestingly, two months DOD sends me a nice little note thanking me for being part of study to inform that I "was taking a placebo." Why the sudden change in the double blind lock-in??? Never heard any more from US Govt but few months ago, reports of this 7-year study were leaked or released from the Hague. Appears that "17% of those on finesteride had unexplainably drastic increases in Gleason from biopsy to post op pathology." Can't change what happened in the study but the Govt would not lie about it would they???? The Bastards!!! Anyway, was no PSA for 7 months, but started reading of .0001 and began Lupron. Lupron worked for 4 months, SCAN showed cancer spread to bones, then tried Casodex along with Lupron. Did not work, so began infusions of Zometa. Last month tried experimental vaccinne (GVAX) giving in 16 shots for first treatment and 12 in succeeding treatments. Then systems began shutting down -- pneumonia, anemia, low platelets. After that came the transfusions and that is where we are today Don't know about time but right now Christmas looks obtainable. I'm at peace, spiritually and hopefully my affairs are in good shape for Barbara. Thanks for listening Bill. Thanks for your friendship, being a classmate, roommate,. Love, Chuck Luton Chuck died on December 23rd. He intended the note on his battle with PC to be an informational reference tool for the rest of us. In one sense, Chuck’s experience as a member of a test group is so unique it will probably never be repeated. That aside, other aspects of his experience illustrate vividly the messages that are so very basic to identifying the disease and treating it once diagnosed. Let’s use Chuck’s experience to drive them home. First, it is critically important to diagnose the disease before it spreads from the prostate. Therefore, we have to have regular (annual) screenings, that is, PSA tests in conjunction with the digital rectal exam (DRE), the finger wave of lore. There have been a number of recent studies stating that the PSA test is a less than accurate indicator of PC and questioning its value. There is no new news there, nor is there anything better right now, either. The PSA is only one indicator as a predictive tool; the DRE is another as the doctor searches for hard spots on the prostate. The PSA benchmark normally used is 4.0. Below that biopsies are not usually taken; above that reading they may be. Chuck’s case illustrates a PSA shortcoming; his reading was below 2.0, but the biopsy, as part of the test revealed the presence of cancer. In other of our classmates, biopsies taken because of readings well over 4.0 have revealed no cancer. Another use of PSA is to assess PSA velocity, that is a jump in readings between tests. A rapid increase may lead to a biopsy. Chuck’s biopsy resulted in a Gleason score of 6, indicating the presence of a non-aggressive cancer, one that probably was still confined to the prostate. He had his prostate surgically removed in December 2002. The post operative pathologist’s report showed a Gleason score of 9, indicating the cancer was in fact aggressive, fast acting. At that time, the doctors probably suspected the cancer had escaped the prostate. But, they had to wait and see. One of the options at that time, had they suspected escape, was to immediately begin chemo treatment, but Chuck didn’t state that happened. At any rate, one of the things PSA is really an accurate measure of is the recurrence of cancer once the initial treatment is complete. After treatment, the PSA score will be almost non-existent, some place around <.05 or lower. All of us who have been treated have tests taken at about 6-8 month intervals. Should the PSA rise to .3 or so, it shows probable recurrence, and a new fight begins. Chuck related so very graphically the different treatments he endured as his 3-year battle wore on. So, the message is clear: get tested regularly. As we age the possibility of PC occurring increases, and identifying it early provides the best chance to survive it. Get a copy of “Report to the Nation on Prostate Cancer: A Guide for Men and Their Families.” It was published by the Prostate Cancer Foundation in 2005. Copies can be ordered or obtained through their web site, www.prostatecancerfoundation.org. Become your own expert. That is Chuck’s legacy.
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