Observations

An Example of Maintaining Prostate Cancer Statistics

Charles C. Maack

DOB: December 11, 1932

Prostate Cancer diagnosed November 1992 at age 59 with PSA 6.3ng/ml

RADICAL PROSTATECTOMY December 16, 1992 at Wesley Medical Center, Wichita, Kansas, by Urologists from the Urology Department of the Wichita Clinic .

Biopsy prior to surgery gave a Gleason score of 5. Pathology after surgery used 28 slides to review 101.2g prostate gland measuring 4.5cm anterior to posterior, 6.5cm transversely, and 4.7cm from distal to proximal surgical margins. Slides determined Gleason score of 7 (3+4), pathological staging T3aNOMX which equates to T3a-extraprostatic extension (in my case, into fatty tissue) without seminal vesicle invasion, NO-no lymph node involvement, MX-unable to determine distant metastasis.
Three slides covering four lymph nodes found no carcinoma
Four slides covering seven other lymph nodes found no carcinoma
Slide of seminal vesicle found no carcinoma
Two slides covering sections of the vas deferens found no carcinoma
No urethral involvement was identified

However, the posterior and bilateral distal portions of the gland showed positive margin involvement into fatty tissue.

Following recovery from the surgery, from February to April of 1993 I received EXTERNAL BEAM RADIATION at Wesley Medical Center Radiation Department five days a week. After the radiation treatments my PSA reading was 0.1ng/ml and subsequent bone and CT scans were negative.

For the next three years scans were negative and PSA reading remained less than 0.1ng/ml.

In April 1996 my PSA reading was 0.25ng/ml.  By November 7, 1996 my PSA reading had risen to 0.81ng/ml.  On November 20, 1996 began ANDROGEN DEPRIVATION THERAPY (ADT2) with a LUPRON injection every three months, accompanied by a daily 50mg CASODEX pill, for what was considered a total testosterone blockade (later learned it was not).  After turning 65 in December 1997 and having to switch to Medicare as my primary coverage and no military coverage except for those medications a military pharmacy had in its formulary, I was no longer covered for the CASODEX pill and the military would not stock it or provide it to me because of its expense.  Fortunately, the HMO I signed up to provide me supplemental insurance for what Medicare did not pay said they would pay for this oral cancer medication.  However, in late 1999 they said they had made a mistake, and would no longer pay for that medication.  I then was able to get NILANDRON from Brooke Army Medical Center in San Antonio, TX and took that medication until late in 2000 when, though continuing Lupron (ADT), I discontinued taking any pill, so went from ADT2 to only ADT.

Earlier, on May 8, 2000, 3 years and 6 months with ADT2, I had a DEXA bone mineral density interpretation done to see if the androgen deprivation had effected that density.  The result was Lumbar Spine: BMD 1-286, T Score 0.4, Z Score 0.1.  Total Average Femur: BMD 0.984, T Score –0.8, Z Score –0.5.  Interpretation of data: There was no evidence of osteopenia or osteoporosis.

Since by October 23, 2001 and five years of ADT2/ADT my PSA had not risen beyond 0.1ng/ml, I requested an ultra-sensitive 3^rd generation PSA reading to get a more accurate marker of any PSA in my system.  The result was a reading of 0.01ng/ml which, by several prostate cancer authorities, is considered in the range of "undetectable" PSA.  I followed this having a testosterone serum reading done on November 6, 2001 to also get a marker for my current testosterone level . The result was a reading of 33 ng/dl, which is above what is considered the castration level of <20 ng/dl.  This would indicate that I likely had/have an androgen dependent prostate cancer.  (These tests should have been ordered by my physician five years ago after my first month of ADT2!  It was only after my own research into procedures to be followed to ensure the ADT is working that I knew this should be necessary).

I now had transferred from my urologist to an oncologist at the Cancer Center of Kansas (CCK) (telephone 316-262-4667) who agreed with my reasoning that it was time to “test the waters.” WATCHFUL WAITING: I discontinued androgen deprivation therapy (last injection August 2001). He directed that in view of the necessity to now keep a very close check on my level of PSA, I monitor my PSA and testosterone levels monthly. Should my PSA begin to rise, I should return to androgen deprivation Lupron injections and, if necessary CASODEX.

12/17/01 Normal PSA test <0.1 ng/ml, Testosterone 37 ng/dl
01/14/02 Normal PSA test <0.1             Testosterone 38 ng/dl
02/11/02 3^rd Gen. PSA test 0.01            Testosterone 52 ng/dl
03/11/02 Normal PSA test <0.1            Testosterone 30 ng/dl
04/15/02 Normal PSA test <0.1            Testosterone 45 ng/dl
05/13/02 Normal PSA test <0.1            Testosterone 24 ng/dl
The 5/13/02 PSA test was supposed to be a 3^rd Generation test but lab failed to realize that.  I decided at this time I will just get quarterly 3^rd Generation PSA tests until such time that I see any change in the readings.
05/21/02 3^rd Gen PSA test 0.04ng/ml (figured this may be a miss-reading)
06/10/02 Another Dexa Bone Mineral Density test.  Result: Compatible with normal bone density at each site examined (T-scores all above -1.0 - No evidence of osteoporosis).
08/20/02 3^rd Gen. PSA test <0.01 ng/ml         Testosterone 122 ng/dl
08/21/02 Bone Scan: No evidence of metastatic disease.
11/08/02 was supposed to be 3^rd Generation but came back as a normal reading of <0.1ng/ml     Testosterone 98 ng/dl

AS OF DECEMBER 16, 2002, IT HAS BEEN TEN YEARS SINCE INITIAL RADICAL PROSTATECTOMY.

02/04/03 3^rd Gen. PSA test 0.01 ng/ml  Testosterone 89 ng/dl
04/29/03 3^rd Gen. PSA test 0.02           Testosterone 95 ng/dl
06/12/03 3^rd Gen. PSA test 0.04            No testosterone result
With this increase to 0.04ng/ml my oncologist wanted to resume Lupron.  I requested we wait another two months. 
08/05/03 3^rd Gen. PSA test 0.05ng/ml    Testosterone 88 ng/dl
Oncologist agrees that we wait for more significant progression before recommending return to any treatment.
11/06/03 3^rd Gen. PSA test 0.13ng/ml  Testosterone 87 ng/dl

RETURN TO ANDROGEN DEPRIVATION THERAPY (ADT)

11/18/03 began two weeks of Casodex 50mg w/Proscar 5mg to prevent a biochemical flare before returning to Lupron.  (With Congress enacting the law that retired military members and their dependents are entitled to military insurance coverage for life (Tricare-for-Life), I became covered for all medications, thus Casodex, Proscar, Avodart, etc. would now be covered by Tricare-for-Life.)

12/04/03 began Lupron 4-month injection and discontinued the Casodex and Proscar.
12/5/03 after reading a presentation by Dr. Charles "Snuffy" Myers, a nationally recognized oncologist specializing in prostate cancer treatment, I added 10mg Lycopene, a powerful antioxidant that causes prostate cancer cells to self-destruct, and 1000mg Fish Oil (Omega-3 fatty acid), a very powerful factor for general health as well as having a major impact on the evolution of prostate cancer.

AS OF DECEMBER 16, 2003, IT WAS 11 YEARS SINCE INITIAL RADICAL PROSTATECTOMY.

2/15/04 From an Email from Dr. Strum, another nationally recognized oncologist who specializes only in prostate cancer, to a patient recommending Lycopene at 15mg twice daily, I increased my intake to that level this date.
2/27/04 PSA <0.01ng/ml           Testosterone 26 ng/dl
Since testosterone has not yet reached "castrate" level of <20 ng/dl,
3/2/04 added Casodex 50mg daily.
3/25/04 At appointment with oncologist discussed the Casodex addition and my interest in adding dutasteride (Avodart) to bring down testosterone level to <20ng/dl.  Oncologist reasoned that since Lupron alone has returned my PSA to a virtually undetectable <0.01ng/ml and brought my testosterone down to 26ng/dl his preference would be to keep Casodex in reserve in the event my PSA were to begin a rise, and Avodart as well unless we determine that the testosterone is also not maintaining its current low level. He agreed with my preference for 84-day Lupron rather than 112-day Lupron.
3/25/04  ADT.  Received 84-day Lupron injection (but continued Casodex 50mg one per day on my own, ADT2, while typing up my reasoning why I would prefer to be attacking any PC still present with full three-level blockade (ADT3) rather than waiting for some change to occur.  ADT only buys time, ADT3 attacks PC cells and can kill them, create apoptosis, or cause them to remain dormant for many years).
4/10/04 ADT3.  Oncologist acquiesced to my preference to continue Casodex and add Avodart 0.5mg one per day to my regimen.
(During presentation at our Us TOO meeting, a noted physician indicated that Avodart remains working in the system for more than two days, therefore I now take Avodart 0.5mg every other day)
5/27/04 3^rd Gen. PSA <0.01ng/ml Testosterone 23ng/dl
6/10/04 Received 84-day Lupron injection.  Continuing ADT3.
8/24/04 Testosterone 22ng/dl - Lab lost blood sample for 3rd Gen PSA test.
8/25/04 Another Dexa Scan - No evidence of osteoporosis - all areas normal with all T-scores above -1.0, in fact for Lumbar Spine 5% improvement since 2002 scan and 3% improvement since 2000 scan; Right Femoral Neck 2 % improvement since 2002 scan and 1% improvement since 2000 scan; Left Femoral Neck 5% improvement since 2002 scan and 9% improvement since 2000 scan.
9/2/04 Provided another blood sample for 3rd Gen. PSA test. Received 84-day Lupron Injection. Continuing ADT3.
9/7/04 Result of 9/2/04 test 3rd Gen. PSA<0.01ng/ml.
11/15/04 PSA <0.01ng/ml, Testosterone 38ng/dl.
11/23/04 Received 112-day Lupron injection because neither the Cancer Center of Kansas nor Via Christi St. Francis Hospital had 84-day Lupron in stock.

AS OF DECEMBER 16, 2004 , IT HAS BEEN TWELVE YEARS SINCE INITIAL RADICAL PROSTATECTOMY.

1/26/05 Recognizing that the DEXA scan received and noted herein on 8/25/04 appears suspect since it is hard to imagine an “improvement” in bone density after being on androgen deprivation therapy for over eight years, a Pyrilinks-D (Deoxypyridinoline – Dpd) test was administered as another measure to determine if excessive bone resorption or breakdown is occurring. This test measures a fragment of the bone matrix that is excreted in urine. Per Dr. Strum, a normal reading of Dpd/Creatinine ratio is considered <5.4nmol/mmol, within a range from 2.3 to 7.4 nmol/mmol. Today’s test result of 9.4nmol/mmol is significantly high! This supports my opinion that the DEXA scan has falsely read either arthritic changes in the lumbar spine and hip, curvature of the lumbar spine, and/or vascular calcifications in either spine or hip area as bone density, thus understating the degree of bone loss. (Note to readers: In that a DEXA scan can provide false readings, a QCT BMD (Quantitative Computerized Tomography Bone Mineral Densitometry) scan should be the choice of testing if available in your area.)
2/1/05 psa <0.01ng/ml, Testosterone Free Direct reading of .8pg/ml of a normal range 6.6-18.1pg/ml (When taking lab sample, clerk erroneously checked Testosterone, Free, rather than Testosterone, Serum)
2/15/05 Oncologist agreed that a bisphosphonate should be included in my medications and prescribed Fosamax 70mg, 1 per week, take with 6-8 oz. water same day of week first thing upon arising while empty stomach, no other meds or food for thirty minutes, and remain up and active after taking.
3/15/05 will be the final date of expected effectiveness of the Lupron injection received on 11/23/04 . ACTIVE OBJECTIFIED SURVEILLANCE : Having maintained a PSA of <0.01ng/ml for the past full year with ADT3, this will also be the commencement date of my second off-phase from ADT (Intermittent Androgen Deprivation - IAD) but this time maintaining with Avodart in accordance with the trial results of Dr. Stephen B. Strum described in the first edition of "A Primer on Prostate Cancer," pages 144-149. I ceased intake of Casodex on 2/15/05 . According to Dr. Strum, the concept behind using Intermittent Androgen Deprivation (IAD) is based on at least the following:

1. The finding of sufficient adverse effects (fatigue, muscle loss, hot flashes) from AD (androgen deprivation) to warrant giving the patient a "holiday."
2. The belief that a testosterone surge has pro-apoptotic (cell killing) effects against the PC cell population (if there is residual active PC).
3. The ability of a normal testosterone milieu to stop the bone loss and release of bone-derived growth factors that are known stimulants for PC growth.
4. In men with intact neurovascular bundles, potency is usually recaptured in the off phase of IAD

5/10/05 PSA <0.01ng/ml, Testosterone 23ng/dl.  In off-phase from ADT (IAD) maintaining with 0.5mg Avodart one each evening.
5/31/05 MRI of the Lumbar Spine with and without contras. Wichita Open MRI. Findings: The sagittal imaging shows no evidence of compression fracture or evidence of altered signal from the marrow of the vertebral bodies. The transverse series does show some moderate stenosis at the L3-4 level secondary to disk bulging as well as some ligamentous and bony hypertrophic change. More moderate to severe stenosis is as the L4-5 level secondary to ligamentous and bony hypertrophic change. The AP dimension of the dura at the L4-5 level measures about 9mm. I do not see any evidence to suggest metastasis or evidence to suggest any abnormal enhancement. Impression: There is moderate to severe stenosis most marked at the L4-5 level secondary to ligamentous and bony hypertrophic change with the AP diameter of the dural sac here measuring about 9mm. I do not see any metastatic disease or compression fractures.

8/9/05 PSA <0.01ng/ml, Testosterone 45ng/dl. Continuing in IAD off phase but maintaining with 0.5mg Avodart daily.

10/4/05 Pyrilinks-D (Deoxypyridinoline-Dpd) lab result 6.4 nmol/mmol. A significant improvement from 2/2/05 9.4 nmol/mmol reading as an obvious result from the administration of Fosomax 70mg one per week begun 2/15/05. Normal range is 2.3-7.4 nmol/mmol but hope to reach preferred level 5.4 nmol/mmol recommended by Dr. Stephen Strum.
11/7/05 PSA <0.01ng/ml, Testosterone 51ng/dl. Continuing in IAD off phase but maintaining with 0.5mg Avodart daily.
02/6/06 PSA <0.01ng/ml, Testosterone 51ng/dl. Continuing in IAD off phase but maintaining with 0.5mg Avodart daily.
05/10/06 PSA <0.01ng/ml (CCK failed to get T level). Continuing in IAD off phase but maintaining with 0.5mg Avodart daily.
7/25/06 Pyrilinks-D result 5.0 nmol/mmol. Fosamax continuing doing its job.
8/15/06 PSA 0.02ng/ml (???, will check this again in November!), Testosterone 45ng/dl. Continuing IAD but maintaining with 0.5mg Avodart daily.
11/13/06 PSA 0.04ng/ml (Ooops…maybe getting nasty again…will keep monitoring for awhile). T 53ng/dl. 25-hydroxy Vitamin D3 25.5ng/ml (extremely deficient in Vitamin D3! Will increase Vitamin D3 intake to 9800IU daily to try to reach preferred 65ng/ml).

AS OF DECEMBER 16, 2006, IT HAS BEEN FOURTEEN YEARS SINCE INITIAL RADICAL PROSTATECTOMY.

1/10/07 5a-Dihydrotestosterone (DHT) 2.9mg/dl. 25-hydroxy Vitamin D3 38.5ng/ml (Vitamin D3 movin’ on up!)
2/13/07 PSA 0.07ng/ml (More ooops….if it doesn’t level of before reaching 2.0ng/ml I’ll return to Lupron and Casodex added to my continuing Avodart) T has dropped to 39ng/dl.
5/8/07 PSA 0.08ng/ml (Ahha! Very small increase! At this rate, could be another couple years before a return to Lupron and Casodex). T back up to 59ng/dl but obviously not going to go higher. As a recurring PC patient, I have no intention to attempt T replacement therapy. 25-hydroxy Vitamin D3 41.6ng/ml so increasing at slow rate. Will increase Vitamin D3 supplement by another 1800 IU to a total daily intake of 9200 IU to see if that will provide a more significant increase.
5/22/07 Pyrilinks-D result 5.1nmol/mmol. Still below Dr. Strum’s preferred 5.4nmol/mmol. Fosamax continue to do its job.
7/8/07 Pyrilinks-D result 4.9nmol/mmol.
7/31/07 PSA 0.11ng/ml (Hmmm! This what is meant by Active Objectified Surveillance (AOS)!). T went way up (if you can call an 18ng/dl rise from previous steady levels of any value!) to 71ng/dl – yippee? 25-hydroxy Vitamin D3 level 51ng/ml (still goin’ up!). Parathyroid hormone level 8pg/ml. Calcium serum level 9.6mg/dl.
10/30/07 PSA 0.17ng/ml (still sneaking up), T 48ng/dl so dropped back down, 25-hydroxy Vitamin D3 level 60.8ng/ml so will probably cut current 9000 IU daily intake to 5000 IU and see how things look in three months.
10/31/07 Experiencing lower back pain, so had MRI this date.  Result: Spinal stenosis at L4-L5 due to combination of degenerative disc, ligamentous and bony disease.  No evidence of nerve root encroachment.  Remainder of lumbar spine unremarkable and no sign of any acute bony abnormality or of metastatic disease.

As prescription requirements or my choice of medications or supplemental vitamins, I currently take the following (Exception: No Lupron and No Casodex when noting in these statistics that I am on an off-phase from ADT):

• LUPRON (Luteinizing hormone-releasing hormone) LHRH agonist (84-day lasting Injection) forces the pituitary to over-stimulate the Leydig cells in the testicles to “wear them out” or to reduce the ability of the messenger to stimulate those sells; the messenger is LH or Luteinizing Hormone-Releasing Hormone of the hypothalamus. The end product is a diminution of Leydig cell testosterone (T). This is better known as Androgen Deprivation Therapy (ADT), chemical castration, for prostate cancer control. Though historically termed ADT, it would be better termed TRT, since it is, in reality, Testosterone Reducing Therapy.
• CASODEX (bicalutamide) 50mg 1 at night. Anti-androgen that blocks the androgen receptors and prevents natural androgens from stimulating cancer cell growth. ADT2
• AVODART (dutasteride) 0.5mg 1 at night. 5-alpha reductase (5-AR) inhibitor that blocks both Type I and Type II enzymes in prostate cancer cells from converting testosterone (T) to five times more potent metabolite dihydrotestosterone (DHT) that profoundly stimulates cancer cell growth. ADT3
• CALCIUM CITRATE 945mg w/VITAMIN D3 600 IU 3 tablets at night (each tablet contains 315mg Calcium Citrate & 200 IU Vitamin D3) (to aid against loss of bone density that could otherwise be caused by ADT) . Note: Calcium CITRATE is preferred over Calcium Carbonate because it is better absorbed in the system and best taken at bedtime.
• LYCOPENE 15mg morning, 15mg night (as antioxidant causes prostate cancer cells to self-destruct).
• VITAMIN C 1000mg 1 in morning (Vit. E works best in association with Vit. C – Vitamin C prevents fatty acid peroxide generation).
• VITAMIN D3 9000 IU (4400 IU in morning , 4600 IU in evening). Includes 8000 IU as Vitamin D3 supplements, plus 400 IU as part of daily multivitamin and 600 IU as part of daily calcium citrate supplements. When 25-hydroxy Vitamin D3 level reaches 65ng/ml, will reduce Vitamin D3 to 4000 IU per day. 4000 IU per day should then maintain against Vitamin D3 deficiency. Vitamin D3 is important for bone, prostate cancer suppression, and general health.
• VITAMIN E 400 IU 2 in morning (Vitamin E is an antioxidant that will reduce oxidative damage to prostate).
• FISH OIL (Omega-3 Fatty Acids) 4000 IU daily (two 1000mg gelcaps in morning, two 1000mg gelcaps at night (as antioxidant reduces risk of recurrent prostate cancer as well as powerful factor for general health).
• POMEGRANATE as extract capsule from Life Extension Foundation (LEF) 1 capsule daily equivalent to 12.3oz juice.
• SELENIUM 200mcg 1 in morning (as antioxidant converts hydrogen peroxide to water)
• FOSAMAX (alendronate sodium) 70mg 1 in morning once a week and on same day every week as a bisphosphonate to stop bone loss that can result from ADT.
• **(Due to recall 10/1/04 because long term use could cause stoke or heart problems, ceased ROFECOXIB (VIOXX) 25mg 1 in the morning, however, this drug had helped arthritis pain as well as was known to block the COX-2 enzyme, and in so doing, help destroy prostate cancer cells).

(ABOVE MEDICATIONS ALL TAKEN IN MY FIGHT AGAINST PROSTATE CANCER) .

• SIMVASTATIN (ZOCOR) 80 mg 1/2 once at night to reduce cholesterol
• RABEPRAZOLE (ACIPHEX) 20 mg 1 at night to prevent gastric reflux/heartburn
• MULTIVITAMIN tab 1 in morning (Contains Vit A(acetate) 5000IU, Vit. B-1 1.5mg, Vit. B-2 1.7mg, Vit. B-6 2mg, Vit. B-12 6mcg, Vit. C 60mg, Vit. D 400IU, Vit. E(acetate) 15IU, Folic Acid 0.4mg, Niacinamide 20mg)
• ADVAIR (fluticasone propionate 250 mcg & salmeterol 50 mcg inhalation powder) 1 inhalation in morning, 1 at night to keep clear from bronchial and lung congestion
• ALBUTEROL (Proventil) 90mcg Puff Inhaler as needed for Asthma 2 puffs no more than every four hours.
• GLIPIZIDE 5mg 1 in morning, 1 in evening to control glucose serum level
• CETIRIZINE (Zyrtec) 10mg, 1 in morning for allergy control.
• FOSINOPRIL (Monopril) 10mg, 1 in morning. Being a borderline diabetic, drug protects the kidneys.

DISCLAIMER: The information and opinions expressed on this web site are not an endorsement or recommendation for any medical treatment, product, service or course of action by Us TOO - Wichita Chapter. For medical, legal or other advice, please consult appropriate professionals of your choice.

©Copyright 2009 , Us TOO - Wichita Chapter, All Rights Reserved.