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PLATINUM

Charles (Chuck)Maack and Ann live in Wichita, Kansas U.S.A. He was 59 when he was diagnosed in Nov. 1992 His initial PSA was 6.8ng/ml and his Gleason Score was 3+4=7. He says he was staged T3aN0MX, but that is his pathological staging after surgery rather than his clincial stage which seems as if it would have been T1c. The treatment his urologist chose for him was Radical Prostatectomy (Surgery). Here is his story:


I advanced to the top of the enlisted ranks as a Master Chief Cryptologic Technician and retired after 27 ½ years in the United States Navy and 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 and I have been married since April 6, 1954 and have four children, six grandchildren, and one great-grandchild.

Since 1996 I have been an active participant in the Wichita, Kansas Chapter, Us TOO Intl., Inc., 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 currently serve on the chapter Board of Directors as Treasurer and on the Coordinating Committee as Program Director, Treasurer, and Website Manager.

I was diagnosed with Prostate Cancer in December 1992 with subsequent treatment over the years of radical prostatectomy followed by external beam radiation, 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) with PSA <0.01ng/ml, began 2 years off-phase (Intermittent Androgen Deprivation Therapy - IADT). After another return of slow rise PSA to 0.13ng/ml, returned to ADT but this time ADT3 (Lupron/Casodex/Avodart). With November 2003 to February 2005 continuous fifteen month <0.01ng/ml PSA, have since been on second off-phase from ADT but with continued Avodart maintenance. My intention is to remain in this second off-phase until my PSA reaches 2.0ng/ml. Unless there is an update to the foregoing diagnostics, I continue in this second off-phase.

I am an aggressive student in the biology, methodology, and treatment of Prostate Cancer by means of the internet, medical books and periodicals dealing with Prostate Cancer, Emails with physicians who specialize in the treatment of Prostate Cancer, other physicians, other survivors, attending annual conferences on Prostate Cancer, and just about any reliable source in order to be aware of the latest advances in Prostate Cancer research and treatment with which to make intelligent health care decisions with physicians and knowledgeable discussion and direction to patient empowerment when asked for counsel.

I have written several articles in advocacy for men and their caregivers regarding Prostate Cancer and the many issues involved in the treatment of this disease (see "Observations") to support, educate, empower, and hopefully ease their concerns. I speak and volunteer at seminars, health fairs, and other groups, large and small.

In association with a son who is Special Projects Manager for Computer Training Systems and Network Applications in Wichita, I provided the input material and my son provided the expertise to develop and program - and the computer company sponsor - a website, for the Wichita chapter.

I served on the Chapters Advisory Panel of Us TOO Intl., Inc., and currently serve on the Patient Advisory Council of the Prostate Cancer Research and Education Foundation (PAC-PCREF), and as an 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.

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) “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.

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 while appropriate initial 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, early treatment as the result of educated choice, hopeful cure, and the advent of affordable cost of cancer medications that can inhibit or kill cancer cell growth and prolong life.

 

UPDATED

May 2009

 

 

I continue on my second “off-time” from ADT while maintaining with Avodart. It has now been over 4 years. My most recent PSA reading a couple weeks ago was 0.87ng/ml.

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."

 

UPDATED

July 2009

 

 

4 ½ years into 2nd Intermittent ADT (Androgen Deprivation Therapy) maintaining with Dutasteride /Avodart.

2 ½ years ago PSA began very slow rise to current 0.81ng/ml. Intent is to return to Lupron/Casodex when PSA reaches 2.0ng/ml. At present rate, could be another 2 to 3 years.

My cancer lead me to advocacy and mentoring. I developed helpful information for all prostate cancer patients at Observations.

 

UPDATED

November 2009

 

 

Chuck is now 76 and his PSA is 1.16 ng/ml. He would like to know if there are any PCA survivors who have continued that survival despite still having prostate cancer for more than my 17 years [ There are three men diagnosed a year earlier than Chuck on this site - see Year of Diagnosis].

 

UPDATED

October 2010

 

Just finished 2 months short of 6 years off Lupron and Casodex but maintaining with dutasteride/Avodart. PSA took 5 years 10 months to finally reach 2.0ng/ml from a previous <0.01ng/ml following second round of ADT3.

The 2.0 ng/ml level was that set by myself and agreed to by my Medical Oncologist to return to an androgen deprivation medication other than my continuing dutasteride/Avodart. Since I only have a 13ng/dl testosterone level, saw no need to return to the LHRH agonist Lupron, but did consider that with return to the generic of Casodex, bicalutamide, to shut down the androgen receptors, it would be prudent to hit those AR with 150mg rather than the usual 50mg.

Now we shall see what occurs.

 

UPDATED

December 2011

 

When my PSA continued a rise while on triple bicalutamide (150mg), I added Lupron. With this return to ADT3 my PSA fluctuated down to as low as 1.67 ng/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 0.74ng/ml. Testosterone has 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.

I am currently scheduled to continue this Zytiga protocol for a total 180 days (six 30-day prescriptions) accompanied by continued Lupron and Avodart. I now have my own website The Prostate Advocate for patients to visit over 130 papers regarding prostate cancer, its treatment, and treatment of the side effects of treatment

Chuck's e-mail address is: maack1@cox.net

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