PROSTATE CANCER BIOGRAPHY OF CHARLES (CHUCK) MAACK
8201 E. Harry #1804, Wichita, KS 67207
Tel: (316) 993-6997 Email: maack1@cox.net

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
followed by an injection of the same vitamin to counter the thin blood. Experienced constant bleeding for 32 hours before Vitamin K countered warfarin and blood finally coagulated. While still in ICU 7/18, had colonoscopy in late afternoon but with blood having coagulated about an hour before (and system “cleaned out” with the yuk drink the night before) unable to determine cause. Doctor came in 7/19 to report he contacted three colleagues and all said the diverticulosis I have had for years likely erupted then bled so severely because of the thin blood from warfarin and just wouldn’t coagulate; he said this happens frequently to men over 70 years of age. Released 7/19 afternoon. Became anemic from blood loss: early August 2013 red blood cell count 4.20 when bottom of range is 4.69; hemoglobin/HgB 13.0 when bottom of range is 14.1; and hematocrit/HcT 38% when bottom of range is 43.5. Taking iron tablet twice a day and eating more greens and red meat (though red meat otherwise a no-no for PC patients) to get these counts back up. Doctor said it could take 3 to 4 months to do so. With the fatigue and energy loss from the blood loss, on top of the fatigue and energy loss already experienced from Zytiga (testosterone level is <3.0ng/dl because that is as low as the equipment reads), I tire very fast and even walking a short distance takes its toll. Otherwise feel okay.

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!

Oops again, Sneaky Pete is sneaking up on me again…PSA 1/6/2014 0.384ng/ml, so up 0.032ng/ml. Seems insignificant, but this has been a continuing, though very slow, elevating since earlier nadir of 0.319ng/ml on 7/1/13; an overall 0.065 over 6 months. I can continue to be happy if it continues no more rapid a rise than this since even in 10 years it would only get up to 1.68ng/ml…wouldn't that be nice?

Yippee…PSA 3/7/2014 dropped down to 0.379ng/ml. I’ll take any drop no matter if only .005!

OOPS…6/30/2014 PSA sneaking up to current 0.519ng/ml. That’s a pretty significant rise, so, we shall see and hope it slows down by October.

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.

In association with a son who is a computer engineer for Computer Training Systems in Wichita, I provided the input material and my son provided the expertise to develop and program – and the computer company sponsor – a website, www.ustoowichita.org for the Wichita Chapter of Us TOO Intl., Inc., and again with my son to develop this personal website.
In the past I served on the Chapters Advisory Panel of Us TOO Intl., Inc., and on the Patient Advisory Council of the Prostate Cancer Research and Education Foundation (PAC-PCREF).  I continue to serve as on-call counselor for the Wichita branch of the American Cancer Society and the Victory-in-the-Valley Cancer Patient Support organization on matters relating to Prostate Cancer.  I was selected and participated as a Consumer Reviewer regarding Cell Biology in Reston, Virginia as part of the Prostate Cancer Research Program (PCRP) sponsored by the Department of Defense, United States Army Medical Research and Materiel Command, 2006 Congressionally Directed Medical Research Program (CDMRP). I was invited again in 2007 and served as a Consumer Reviewer-Mentor regarding Physical Imaging. I was also invited to participate in IMPaCT (Innovative Minds in Prostate Cancer Today) in September 2007 at a gathering in Atlanta of over 600 Prostate Cancer Research Scientists and 100 other Consumer Reviewers/PC survivors/Advocates. I was invited to attend the 2nd IMPaCT gathering in Orlando in March 2011 but unable to attend because of recovering from pulmonary embolism to both lungs simultaneously the previous December (now family won’t permit me to go anywhere!) . 

PROSTATE CANCER MENTOR AWARDS

Us TOO Intl., Inc. “First Annual Edward C. Kaps Hope Award”
In June 2008 I was among six other advocate/leader members of Us TOO Intl., Inc. who had been nominated by their peers, then selected to receive the prestigious "First Annual Edward C. Kaps Hope Award" presented to (as quoted from the Us TOO website www.ustoo.org) "An Outstanding Leader in an Us TOO Support Group Who Has Shown Unselfish, Dedicated Service to Prostate Cancer Survivors and their Families." I am very humbled by nomination for this award from patients and caregivers to whom I have provided advocacy and counsel to ease their burden of concern. My thanks to all who took the time to nominate me.

Prostate Cancer Research Institute/PCRI “Harry Pinchot Award”
On August 27, 2012 I received a phone call from the CEO of the Prostate Cancer Research Institute (PCRI) that I was one of two men selected to receive the prestigious 2012 PCRI “Harry Pinchot Award” for my, as noted on the PCRI website www.pcri.org,  “accomplishments and personal attributes that show excellence in prostate cancer education, research, advocacy, and community support” to be presented at the 2012 annual PCRI Conference on Prostate Cancer during a Gala Dinner event Saturday evening September 8, 2012 and PCRI would be arranging my transportation, hotel accommodations, and all expenses.  Obviously I was surprised, thrilled, and humbled at the same time.  My thanks for the nomination by Wichita Us TOO chapter member Judge Larry Hollis.   My family relented regarding my traveling, and I attended the conference, received the award, had the opportunity to address the conference attendees (see http://tinyurl.com/8sb9too) and had the pleasure of meeting and talking with several patients and their caregivers with whom I had provided earlier mentoring.  I encourage all patients and caregivers to save and plan ahead to attend one of these outstanding annual PCRI conferences on Prostate Cancer where outstanding presentations are provided by top physicians in the nation who have performed personal research and study and have become  experts in understanding and treating our insidious men’s disease.  Future PCRI conferences will be announced on their website www.pcri.org.    

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.
I encourage all who read this biography to follow the special words that are etched on the SEA blue wristbands worn by Us TOO members – "Support-Educate-Advocate."