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 near continuously on the Board of Directors as Program Director, Secretary, and Treasurer, served a stint as Coordinating Committee Chairman and Secretary, and currently serve on that committee as Program Director, 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!
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 0.531ng/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.
WELL, PSA isn’t slowing down. Over past four months has elevated another 0.22ng/ml to 0.868ng/ml as of 10/19/15. That may appear low to most, but not after triple androgen/hormonal blockade eventually failed necessitating the addition of Zytiga/abiraterone to my treatment protocol. At that time, PSA had elevated to 2.55ng/ml despite Lupron, Casodex, and Avodart, and a brief try of Firmagon/degarelix to see if that would help. With stopping Casodex and adding Zytiga to Lupron and Avodart PSA eventually dropped to a nadir 0.31ng/ml, but has since been slowly but steadily elevating. If this elevation continues at its current rate, it would appear I am going to see over 1.0ng/ml in January 2016. When it closes in on 2.0ng/ml I will have to have made a decision where I want to go next. I may have to seriously consider a trip to Mayo Clinic in Rochester, Minnesota for C-11 Choline PET/CT imaging unless by then C-11 Sodium Acetate PET/CT has been approved by the FDA; that being the case, I would only have to drive a few hours up to the Kansas University Medical Center where this imaging has been in study. Unable to currently make use of that location since the out-of-pocket cost for the sodium acetate agent is $2500.00 and cannot afford that cost at this time. With the hopeful approval of C-11 Sodium Acetate by the FDA in near time, my Medicare and military Tricare-for-Life would then cover everything. Fortunately, it has now been 49 months (4 years, 1 month!) success with Zytiga, Lupron, and Avodart holding my prostate cancer in very slow rising control. Hope “Father Time” continues to keep his clock ticking slowly to keep my cancer reined in, and just maybe he is also able to “turn back” my clock. :D
PSA 12/7/15 0.895ng/ml, so, still on the rise. Started Metformin to see if it will have any effect. Found my Vitamin B12 level, important to be aware when beginning Metformin, is deficient at only 189pg/ml as well as Vitamin D level having dropped to 48.7ng/ml despite intake of 7600 IU daily. Did some research and know Metformin has an effect on Vitamin B12 level, but has no effect on Vitamin D level. Possibly the blood result for Vitamin D was an error so will have the level checked again. Beginning Vitamin B12 supplement 1500mcg daily to hopefully eventually elevate preferably over 300pg/ml. Also going to up Vitamin D3 supplement to 9600 IU daily to get level up over at least 65ng/ml. Having an MRI next week to check lumbar spine because of pain being experienced in left thigh and calf suspected to emanate from the spine, then whole body 18F NAF Sodium Fluoride PET/CT imaging December 30th to determine if there is any presence of metastases.
12/16/15 - MRI of spinal lumbar area because of significant pain running down through buttocks to upper thighs determined bulge between L4 and L5 vertebrae, stenosis narrowing due to degeneration, cartilage between joints wearing down, and thickening of the ligamentum flavum (a protective tissue around the spine). Epidural cortisone injection scheduled for 1/20/16 to hopefully eliminate current significant pain now experienced.
12/28/16 – Whole body imaging with 18F NAF (Sodium Fluoride) PET/CT unable to identify any area of metastasis, though same areas of MRI results were evident as well as identifying absence of prostate gland, left hip having been injected with cortisone, left knee having healed from earlier fall that caused a crack in the knee cap (patellla), and joint degeneration other knee, hip, and in several area as expected from aging. Obviously pleased that wherever cancer cells are still lurking “somewhere” (because of slowly elevating though low PSA level), they continue to be too insignificant in development to be identified by MRI or 18F NAF PET/CT imaging. Still, somewhat disconcerting to have PSA elevating, despite at a very slow pace, yet imaging unable to identify the “where” causing the elevating while on what has been an over four-years protocol of successful Zytiga/abiraterone acetate, LHRH agonist Lupron, and 5Alpha Reductase inhibitor Avodart.
1/18/2016 PSA 0.902ng/ml -Well, at least appears to have “slowed way down” over the past seven weeks since this is only a 0.07ng/ml rise. Thinking about quitting ADT meds and moving to high dose testosterone administration if my Medical Oncologist is willing to experiment or I can find a local physician with expertise in high dose testosterone replacement therapy. If that fails to knock PSA down and rather my PSA goes wild, then it may be time to get hit with chemotherapy. Strange that CT, bone, MRI, or 18f Sodium Fluoride PET/CT imaging are all unable to identify continued cancer cell presence, as well as the Circulating Tumor Cell blood test unable to identify any tumor cells in the bloodstream.
2/8/2016 PSA 0.964ng/ml so the elevation, though slow, continues.
5/23/2016 PSA 0.941ng/ml. This is a nice change in direction no matter only dropping by 0.023ng/ml from the February reading!
8/23/2016 PSA 0.88ng/ml. This is a wonderful “drop” in PSA level, particularly having experienced two mini-strokes that put me in the hospital twice and rehab the 2nd time, along with a questioned loss of 40 lbs. from 220 to 180 and 5” off my waist in the last couple months that had me worried my prostate cancer may be acting up. An addition of Metformin w/Vitamin B12 to continued Zytiga, Dexamethasone, Lupron, and Avodart may have done the trick.
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 200 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.
PROSTATE CANCER MENTOR AWARDS
Us TOO Intl., Inc. “First Annual Edward C. Kaps Hope Award”
Prostate Cancer Research Institute/PCRI “Harry Pinchot Award”
Certificate of Appreciation from Us TOO Intl., recognizing 20 Years membership
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.