PROSTATE CANCER BIOGRAPHY OF CHARLES (CHUCK) MAACK
Born and raised in Oshkosh, Wisconsin, and following enlistment in 1949, I advanced to the top of the enlisted ranks as a Master Chief Cryptologic Technician and retired the last day of December 1976, shortly after 27 years in the United States Navy, then totally retired in 1995 following 18 years civilian employment in management. Following military service and already in a management position, I studied to an Associate in Arts degree (summa cum laude) to satisfy myself I could do so. My wife Ann, from Canton, Ohio, and I have been married since April 6, 1954 and have two bookend daughters with two sons in between, five granddaughters, one grandson, one great-grandson, and one great-granddaughter.
Since 1996 I have been an active participant in the Wichita, Kansas Chapter, Us TOO Intl., Inc., Prostate Cancer Education and Support Network, and was instrumental in its incorporation in the State of Kansas as a 501(c)(3) Not-for-Profit Charitable Corporation as a chapter of the Us TOO Intl., Inc. Prostate Cancer Education and Support Network. I served for 12 years as Program Director and currently serve on the chapter Board of Directors as Secretary and Treasurer and on the Coordinating Committee as Chairman, Treasurer, and Website Manager.
I was diagnosed with Prostate Cancer in November 1992 Gleason Score 3+4/7, PSA 6.3ng/ml, with subsequent treatment over the years of initially radical prostatectomy followed by external beam radiation as a safeguard, 3 years apparent remission with PSA <0.1ng/ml, then return of slow rise PSA to 0.81ng/ml. After 5 ½ years Androgen Deprivation Therapy (ADT1/2) from 1996 to 2001with PSA <0.01ng/ml, began 2 years off ADT drugs (Intermittent Androgen Deprivation – IAD). After another return of slow rise PSA to 0.13ng/ml by 2003, I returned to ADT but this time ADT3 (LHRH agonist Lupron, antiandrogen bicalutamide/Casodex, and 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart). With November 2003 to November 2004 continuous <0.01ng/ml PSA, went on second off-phase from ADT but with continued Avodart.
In September 2010, after 14 years on/off/on/off androgen deprivation therapy, I completed my second intermittent androgen deprivation (IAD) that had lasted two months short of 6 years while “maintaining” with dutasteride/Avodart over that entire period. My PSA had finally reached the 2.0ng/ml plateau I had decided would be the appropriate time to return to adding back bicalutamide (generic of Casodex) and Lupron to my continuing Avodart. With this return to ADT3 my PSA fluctuated down to as low as 1.67ng/ml by May 2011. However, despite this triple hormonal blockade, it then gradually began elevating and with the PSA level reaching 2.55ng/ml by September 2, 2011, I had already stopped the bicalutamide and now began abiraterone acetate/Zytiga 1000mg upon rising each morning (requires empty stomach) accompanied by Prednisone 5mg twice daily along with continuing Lupron and Avodart. In three weeks PSA dropped to 1.61ng/ml. At two months, PSA continued drop to 1.28ng/ml. On December 22nd, at a week short of four months, my PSA continued its drop to 0.72ng/ml. Testosterone had dropped to <3.0ng/dl (as we would expect with Zytiga effectiveness). All other CBC/CMP lab results at this time within normal ranges. CT imaging with and without contrast unable to identify location of any tumor activity though did determine mild osteopenia. A Circulating Tumor Cell (CTC) test determined zero cancer cells circulating in the blood stream. An earlier check of my Prolactin level found it too high at 7.4ng/ml, so took Dostinex/cabergoline, one 0.25mg tablet Monday, Wednesday, and Friday for a month and level dropped to 0.4ng/ml. I am continuing this medication to keep the Prolactin level down. February 9th, 2012 PSA result indicated a slight elevation to 0.75ng/ml, so had been hoping this would not be a continuing trend. Testosterone remained <3.0ng/dl. Continued Zytiga, Prednisone, Lupron and Avodart. Lab results 3/26/12: PSA continues elevation currently 0.9ng/ml. Testosterone remains <3.0ng/dl. Zytiga continues but appears to be failing effectiveness. Also continuing Avodart. Switching from the agonist Lupron to the antagonist degarelix/Firmagon commencing 4/5/12 and bringing on nilutamide/Nilandron 150mg daily to see if any effect on PSA. Cutting down on food sources with sugar since most all cancers thrive on sugar passing through the system, especially candy bars and ice cream and cookies, that has been a bad habit of mine. I am currently scheduled to continue abiraterone/Zytiga accompanied by Prednisone until it is certain that it is no longer effective. If Zytiga stopped, will taper off Prednisone to avoid any side effects that can occur when stopped too rapidly.
Well, as of PSA test 4/23/12 – almost 3 weeks into degarelix/Firmagon, nilutamide/Nilandron, and continued dutasteride/avodart and having stopped abiraterone acetate/Zytiga and weaning of Prednisone, PSA took another very slight turn-around dropping form 0.90ng/ml to 0.87ng/ml. I’ll take it! Should be off Prednisone at the end of next week. So, time will tell! If my PSA does another turn-around upward, may just give Zytiga/Prednisone another add-back to see if it makes any difference since I still have a supply of both left.
PSA did another turn-around and began elevating so went back to Lupron, continued Avodart, stopped Firmagon and nilutamide, and returned to Zytiga and Prednisone when PSA hit 1.17ng/ml in June about a month and a half after going off these two medications. I learned from a Medical Oncologist in Texas that patients should not stop Zytiga when experiencing a PSA elevation after earlier drop, since this can occur but then the Zytiga again kicks back in.
A month later (July 2012) PSA dropped to 1.12ng/ml; only a 0.05ng/ml drop, but at least no longer elevating and somewhat turning back down. With my lab work on 8/13/12, PSA had dropped to 0.90ng/ml! I also had my PAP, CGA, CEA, and NSE levels checked just to make sure they were within range. All were in the lower part of normal range except CGA which was slightly elevated, but since I also am prescribed the proton-pump inhibitor Omniprazole/Prilosec, it is known that these inhibitors up-regulate CGA levels and is likely the cause of slight elevation over supposed norm. 25-hydroxy Vitamin D level also within preferred range. Another month gone by and on 9/10/12 PSA dropped once again to 0.74ng/ml. Hallelujah! 10/22/12 PSA dropped to 0.55ng/ml! That is lowest yet since my return to Zytiga this past June/4 months ago when PSA was 1.17ng/ml. I am a firm believer that Zytiga – and likely Xtandi – should be prescribed as soon as the usual androgen deprivation medications are showing failure (LHRH agonist/antagonist, antiandrogen/5AR inhibitor combination). I believe both would be much more effective at that stage when it appears the cancer is becoming hormone refractory (HRPC) than waiting for metastasis to appear or following the failure of the toxic medications involved in chemotherapy. Lab result for 12/14/12 showed PSA steady at 0.55ng/ml. Vitamin D level down to 39.7ng/ml despite daily intake of 5600 IU. Drop likely a side effect of Zytiga. Increasing daily intake to 7600 IU to check again next month. PSA CONTINUES DROP...0.521ng/ml as of 3/4/13! Thus, despite there having been one period of PSA turning around and elevating, with return to Zytiga two months later there has been continuous drop in PSA level. YAHOO!....dropped even more to 0.407ng/ml as of 4/29/13!I STILL DROPPING: PSA 0.319ng/ml as of 7/1/13! I am now 22 months with Zytiga my primary medication backed up by Lupron and Avodart. Also on 7/1/13, 25-hydroxy Vitamin D level finally up in range I want it at 69.2ng/ml.
OOPS…ended up in ICU 7/17/13 with heavy rectal bleeding.
Because of on warfarin, I was first administered oral Vitamin K
NEW PSA RESULT 9/3/13: Slight elevation (0.032ng/ml) higher at 0.351ng/ml than the 0.319 ng/ml level back on 7/1/13. I’m not concerned with this slight turn around since there are too many factors that can skew a PSA result by such an insignificant movement. Two years so far with excellent reaction to Zytiga.
More Good News, 11/8/13 PSA result 0.352ng/ml, so 1/1000th increase – I can “live” with that!
There are still several other protocols that can be prescribed should conditions warrant, so expect I can continue management and control of my continuing prostate cancer for, I hope, several more years. My Mother lived to 96. My Dad to 95. With my birth in 1932, I have several more years to shoot for and intend to do so.
I have written over 150 articles in advocacy/mentoring to be available for men and their caregivers that regard Prostate Cancer and the many issues involved in the treatment of this disease (see "Observations" on my website at http://www.theprostateadvocate.com) to support, educate, empower, and hopefully ease their concerns. I speak and volunteer at seminars, health fairs, and other groups, large and small and provide voluntary advocacy/counsel to patients and caregivers worldwide via the internet.
Us TOO Intl., Inc. “First Annual Edward C. Kaps Hope Award”
Prostate Cancer Research Institute/PCRI “Harry Pinchot Award”
I am an active advocate for increasing extremely necessary Prostate Cancer research funding, awareness of the disease by all men, annual examinations, early detection, time for education and empowerment before beginning any treatment while appropriate additional testing is performed to determine where the cancer is located as well as obtaining biomarkers to evaluate along with the PSA level any other increasing levels or abnormalities, and only then early treatment, if necessary, as the result of educated choice for a hoped for cure. We would then pray for the advent of affordable cost of cancer medications that can inhibit or kill cancer cell growth and prolong life.