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.
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."
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.
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].
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.
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
PROSTATE CANCER BIOGRAPHY OF CHARLES (CHUCK) MAACK
8201 E. Harry #1804, Wichita, KS 67207 Tel: (316) 993-6997
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.
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 off 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. I am no 18 months with Zytiga my primary medication backed up by Lupron and Avodart.
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.
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.
YAHOO!.....PSA dropped from 0.521ng/ml on 3/4/13 to current 0.407ng/ml. I have now been on Zytiga for 19 months.
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!
06/30/2014 Oops once again...PSA has elevated to 0.519ng/ml so hoping we see a decline in three months, or at least a slower rise. I have been on Zytiga, Lupron, and Avodart successfully for 34 months with major side effect being fatigue and little energy as the result of total absence of testosterone (lab reads down to only <3.0ng/dl, and that is where I have been for these many months).
Where my story shows the following:
Yippee…PSA 3/7/2014 dropped down to 0.379ng/ml. I'll take any drop no matter if only .005!
Change all after to read as follows:
OOPS…6/30/2014 PSA sneaking up to current 0.531ng/ml. That's a pretty significant rise, so, we shall see and hope it slows down by October.
Well, here it is 9/29/2014 and my PSA has dropped just a bit to 0.527ng/ml, so, importantly, it is at least remaining stable and you can bet I'm thrilled.
1/27/15 Bone Scan this date hi-lited my left knee (because of recent fracture/healing of that kneecap/patella), left hip (known degeneration with age), lower lumbar spine (known degeneration with age), and a small spot between 9th and 10th left ribs (looking more like from recent injury so for now expect from the hard fall to that left knee and left side that may have jarred the rib cage as well; no pain evident so will just compare in future imaging). Thus, still no evidence of absolute metastases.
Another OOPS....2/2/2015....slight PSA rise of 0.023ng/ml over last four months to 0.55ng/ml. Considering that I have been successful for the past 41 months since adding Zytiga/abiraterone acetate to my earlier failing Lupron and Avodart, I continue pleased that my PSA level remains low and reasonably stable.
PSA 0.66ng/ml 6/15/2015 so, still on a slow but now appearing somewhat steady elevating. It has now been 45 months and thankfully still counting since adding Zytiga with continuing Lupron and Avodart in September 2011 when PSA had reached 2.55ng/ml while on Lupron, bicalutamide (generic of Casodex), and Avodart since September 2010 following a 70 months IAD with only Avodart and returning to adding back Lupron and bicalutamide when my PSA had reached 2.0ng/ml.
Certainly about time for my update. As of most recent, and after PSA had dropped down from 2.55ng/ml to 0.31ng/ml in 23 months after starting Zytiga accompanied by Lupron and Avodart on September 2, 2011, it has been an extremely slowly elevation over the subsequent 37 months as of this coming September 2, 2016 (5 years!) to only 0.941ng/ml. That is an elevation of only 0.017ng/ml per month! With the addition of Metformin accompained by Vitamin B12 recently, there was just a short drop in my PSA by about 0.023ng/ml with that last reading.
I have been on ADT since 1996. Currently Lupron, Avodart, and just switch to Xtandi/enzalutamide two weeks ago following Zytiga/abiraterone that was showing failure as identified by slow but continuing PSA rise following 5 years 8 months of effectiveness in control/management. With PSA having continued very slow but continuing elevation to 0.949ng/ml while on the Lupron/Avodart/Zytiga, with my MedOnc concurrence made the switch to Xtandi and ten days later PSA showed a small but at least drop to 0.826ng/ml. Time will tell how long Xtandi will be effective. Anyone can keep track of my status by visiting my website www.theprostateadvocate.com and clicking on the menu word "About." For access to over 200 papers listing prostate cancer issues and treatment alphabetically, click on the menu word "Observations."
Charles (Chuck)'s e-mail address is: maack1 AT cox.net (replace "AT" with "@")