Living with Terminal Prostate Cancer
Radiation and Hormonal Therapies, Zometa, Xgeva
Risks and Side Effects of Treatment
Diet, Nutrition, Exercise and Supplements
PSA drop from 385.4 to Undetectable
In November of 2010, I was diagnosed with advanced prostate cancer (Clinical Stage 4). There is no Stage 5. I had a PSA (prostate-specific antigen) of 383.5 and 385.4 (separate assay), a Gleason Score of 8, and a prostate volume of 56 cm. Normal prostate volume is 20-25 cm. Bone metastasis (3 sclerotic pelvic lesions) was confirmed by positive computed tomography (CT) and scintigraphy (nuclear medicine bone imaging), commonly referred to as a bone scan.
Few things in life are as psychologically devastating as being unexpectedly blindsided by the horrific realization that you have cancer. You instantly become acutely aware of the fragile nature of your existence and are overwhelmed by a backwash of emotions that can be best summed up in a single word … angst. There is the fear evoked by diagnosis, stressful decisions to be made concerning an array of mind-numbing treatment options, prolonged, physically taxing treatments and their associated side effects, not to mention the cost of treatment and the uncertainty of survival time. When you have cancer, your entire life is disrupted and you become totally wrapped around your disease. You become a slave to your affliction. It is exceedingly difficult to make the transition from I have cancer to cancer does not have me.
The unfortunate truth is that prostate cancer is a disease that is poorly understood. There is more to learn about prostate cancer than is currently known about it, particularly in the realm of bimolecular mechanisms governing its progression, but this much is certain. The only sure way to avoid prostate cancer is to die young. Currently, the reality of prostate cancer is that there are only two ways to cure it … surgery and radiation. To ensure success, both must be performed early enough in the course of the disease before cancer cells have escaped the prostate capsule. Unfortunately, my disease was not caught in time, is no longer organ confined, has spread to the bone, and is unlikely to be curative. Secondary bone metastases is a systemic (body-wide) disease and treatment is primarily palliative. Hormonal, radiation and chemo therapies are the standard of care. Castration (chemical), burn (radiation), and poison (chemotherapy) entail significant risk and side effects.
My cancer is considered high-risk with poor prognosis. In an advanced stage, two to five year survival statistics are grim, but are improving with advances in medicine. Well-meaning people fail to realize the pressure that they put on me with when they insist that I remain positive. Physically I still feel OK, but what I’ve learned has left me discouraged, depressed, and emotionally shattered. As an end-stage patient, with a limited life expectancy of unknown duration (undetermined “expiration date”), and an inevitable decline in quality of life, it will be difficult to remain positive. I now know what it feels like to be on death row with the clock ticking.
When I was confronted by this very real threat to my mortality, I was overwhelmed by fear, anxiety, grief, and despair. I was haunted by coulda, woulda, shoulda regrets. Well aware that the handwriting was on the wall, with only the final chapter remaining to be written, I hastily came to grips with the challenges that confronted me. To solicit assistance and recommendations, I sent a letter, along with my medical records, to 7 doctors at 6 different medical institutions. I received replies from all but one. I decided to be treated locally. In an age of high-tech treatment, the University of Chicago Cancer Research Center, is widely considered to be one of the more progressive medical institutions in the country. Although my doctors … primary care (internist), urologist and radiation oncologist all practice medicine at Northwestern Medical Faculty Foundation and Northwestern Memorial Hospital, (my medical institution of choice), but I opted to be treated by a medical oncologist at the University of Chicago Medical Center, Dr. Walter M. Stadler. Castle Conolly Medical Ltd. is a trusted source that identifies the top doctors in American medicine. Castle Conolly lists Dr. Stadler for the years 2006-2012, and for cancer, for the years 2005-2007 and 2009-2012.
How events unfolded…
On 11/8/2010, I had an appointment with my primary care doctor. A digital rectal exam was performed. My prostate was found to be enlarged with nodularity. A PSA test was ordered. My PSA was 383.5. I was referred to a urologist.
On 11/16/2010, I had an initial appointment with my urologist. A second PSA test was ordered. My PSA was 385.4. My urologist recommended a prostate biopsy.
On 11/23/2010, a transurethral ultrasound guided prostate biopsy was performed, 20 cores were taken. The Gleason score was 8 (4 + 4).
On 12/2/2010, CT and bone scans were performed. 3 sclerotic pelvic lesions were noted (left ischium and right iliac), confirming bone metastasis.
On 12/07/2010, I had an appointment with my urologist. My urologist suggested that radiation and hormonal therapy were in my near future. Since there is a significantly a better chance of long-term survival by undergoing both radiation and hormonal therapy, that was the course of treatment I decided to pursue.
On 12/21/2010, a Dual Energy X-ray Absorptiometry (DEXA) scan was performed. Osteopenia was confirmed.
The first line of defense for advanced, metastatic prostate cancer is systemic treatment in the form of androgen ablation, or what is commonly referred to as androgen deprivation therapy (ADT). Hormonal manipulation is the mainstream medicine standard of care and is essential in the management of advanced prostate cancer. Lupron (leuprolide acetate) is a Luteinizing-Hormone-Releasing hormone (LHRH) agonist (substance that initiates a physiological response when combined with a receptor) that shuts down testosterone production. Bicalutamide (Casodex) is an anti-androgen that inhibits testosterone from binding to prostate cancer cell’s androgen receptors. Adrenal glands produce a testosterone precursor (androstenedione) that is metabolized in the prostate into testosterone. When testosterone comes into contact with 5AR enzymes in the cancer cell nucleus, testosterone is converted into dihydrotestosterone (DHT), a far more powerful stimulant of cancer cell growth (5-10 times more potent). Avodart (dutasteride) inhibits Type I and Type II 5Alpha Reductase (5AR) enzymes. By personal preference, and with cooperation of my doctors, I’m currently, on a triple androgen blockade (ADT3) consisting of Lupron, Bicalutamide, and Avodart. Duration of response to hormonal therapy is highly variable. ADT initially causes most, but NEVER all of the prostate cancer cells to undergo genetically programmed cell death (apoptosis). Some prostate cancer cells are resistant or adapt to hormonal therapy and continue to survive. Hormone-refractory (androgen-independent) prostate cancer cells are totally resistant to hormonal therapy and there is currently no significantly effective treatment strategy for hormone-refractory, metastatic prostate cancer. Despite encouraging initial hormonal therapy response rates, 80-90% of patients eventually develop progressive androgen-independent prostate cancer, for which there is currently no curative therapy. When cancer cells become resistant to hormonal therapy, salvage chemotherapy is employed with some additional prolongation in duration of survival (10% survival rate after 30 months). The encouraging news is that recently approved drugs and promising new drugs on the horizon, in the clinical trial pipeline, hold out hope for long-term survival for those with hormone-refractory prostate cancer.
ADT has its downside. Treatment Induced menopausal side effects include dry skin, hot flashes, erectile dysfunction, abdominal fat deposit, weight gain, breast pain and/or enlargement, decreased size of testes and penis, emotional changes (anxiety, depression, and mood swings), fatigue, loss of libido, sleep disturbance, myalgia (muscle pain), urinary frequency, discomfort or obstruction, and changes in bowel function, including loss of bowel control. More serious side effects include peripheral edema (swelling of hands, feet, ankles, and lower legs), decreased muscle mass, loss of bone mass (osteopenia/osteoporosis), elevated serum glucose, Type-II diabetes, hypertension, cardiovascular disease (heart attack and stroke), elevated cholesterol and triglycerides, decreased HDL cholesterol, memory impairment, cognitive decline, abnormal liver function, increased risk of SREs (skeletal-related events … pathological fractures, spinal cord compression, and severe joint and bone pain), and excess serum cortisol. Some anti-aging experts refer to cortisol as the “death hormone” due to multiple degenerative effects that cortisol produces including immune dysfunction, brain cell injury, and arterial wall damage. As daunting as the side effects are, I had only two alternatives. I could allow the disease to rapidly progress unabated, or I could opt for ADT to survive longer with the distinct possibility of a compromised quality of life. Neither are appealing alternatives, but I opted for ADT. Unfortunately, that is an option that I realized would most likely reduce me to a shade of my former self.
On 12/14/2010, I received my first in a series of quarterly Lupron injections.
On 1/17/2011, fiducial markers were implanted in the prostate for radiation therapy guidance.
On 1/24/2011, a prostate simulation was performed using CT to obtain detailed digital data in order to generate a model for radiation treatment planning. To mark the edge of the radiation therapy field, three permanent dots were tattooed, one on each hip area and one in the pubic region. Tattoos are essential for consistent daily alignment to ensure precision in targeting the tumor area and to minimize dose to adjacent bone and tissue.
On 1/27/2011, I had my initial appointment with my medical oncologist. Treatment objectives and options were discussed. I’m currently undergoing androgen deprivation therapy. A known side-effect is treatment induced bone loss (6% de-mineralization per year) with subsequent increased risk of a debilitating SREs (skeletal-related events … pathological fractures, spinal cord compression, and severe bone pain). 50-70% of cancer patients with bone metastases experience SREs. Although not all men undergoing androgen deprivation therapy will develop osteoporosis, an estimated 50% will be affected by their fourth year of treatment, and more than 80% will be affected after 10 years. Within 5 years, 20% of men undergoing hormonal therapy experience pathological fractures. The determination was made that when radiotherapy was completed, I would receive the bisphosphonate Zometa to counteract my osteopenia and treatment induced bone demineralization that is inevitable with hormonal therapy.
On 2/8/2011, radiation therapy began. External beam radiation, in the form of Intensity Modulated Radiation Therapy (IMRT), consisted of a total of 42 fractions (sessions of treatment) … 23 fractions, followed by 6 rest days, followed by the remaining 19 fractions. Radiation therapy was completed on 4/12/2011. Since the radiation beam passes through the rectum, bladder, and intestines, there is a risk of developing secondary bladder and colorectal cancer. Common short-term side effects include mild fatigue, urinary, and rectal symptoms. Urinary symptoms include frequency, urgency, incontinence, nocturia, narrowing of the urethra, diminished stream, incomplete emptying of the bladder, mild burning during urination, and erectile dysfunction. Rectal symptoms include rectal inflammation, painful bowel movements, diarrhea, fecal incontinence, rectal urgency, leaking, and rectal bleeding. In most cases, the urinary and rectal symptoms are temporary, controllable, and generally improve over time once treatment is completed. Fortunately, my short-term side effects were minimal. Mild diarrhea was controlled with Imodium (Loperamide).
My ultimate goal is to arrest the progression of my disease, render it chronic and managed in order to extend my quality of life and die with rather than from the disease. This will be a difficult objective to attain. Prior to each radiation therapy treatment, I took supplements that served as radiosensitizers and radioprotectors. After each treatment, for liver detox, I took Silymarin/Milk Thistle, ane to restore my intestinal flora, I took probiotics.
One of the unfortunate intellectual vacuums in conventional medical training is nutrition. The vast majority of doctors don’t know a great deal about nutrition because most medical schools don’t teach nutrition, especially in relation to a particular disease. I assumed the responsibility of learning about and implementing a self-imposed cancer diet. I don’t eat refined and processed foods. I have drastically limited my consumption of fats, (particularly saturated and trans fats), high Omega-6, inflammatory, high-glycemic, and acid forming foods. I also avoid foods containing excitotoxic additives. I have virtually eliminated meat, dairy and eggs from my diet, but continue to consume fish. I eat more fruits and vegetables. I have incorporated more whole grains, lentils, beans, and legumes and tofu in my diet. I’ve substituted almond milk and soy creamer for their dairy equivalents (milk & cream). I consume minimal amounts of sugars and starches, eating foods with a lower glycemic index/load. I use lower glycemic agave nectar and coconut palm sugar as sweeteners. I drink green tea and have a glass of red wine every day. Recently, I purchased a Blendtec Total Blender. I now make my own fresh fruit and vegetable juices.
Although evidence from studies of either benefit or harm of supplementation is sparse and inconsistent, I was driven to feel more in control and to do whatever I possibly could to improve my chances and overall outcome. I found it difficult to separate information from misinformation and disinformation (help from hype). I devised my own personally formulated adjunct nutraceutical “chemotherapy” to complement mainstream medical treatment. My supplements included radiosensitizers, radioprotectors (during radiotherpay), inflammatory mediators, immunostimulants, apoptosis inducers, growth factor inhibitors, angiogenesis inhibitors, androgen uptake inhibitors, etc. which have shown promising results in clinical trials or have demonstrated strong anecdotal evidence of being beneficial. My supplement regimen has been expensive. I intend to reduce the supplements taken to those that I feel are most beneficial.
The one thing that troubles me most about where things are in my life, is the nagging realization that my own foolish, irresponsible neglect of personal health (lack of regular doctor visits) could prematurely make my wife a widow. I am guilty for having failed her and that is a burden that I alone must bear and a demon with which I alone must wrestle. In sickness and in health, until death do us part, was not supposed to be hastened along by my failure to take proper care of myself. Regardless, the past is the past and I have to deal with what is on my plate in the here and now. It’s like this. The clock of life is wound but once, and no one knows when its hands will stop. Now is the only time we own. We must live, love and toil with determination and place no faith in time, for the clock will soon be still.
UPDATE: December 20, 2012
On, 4/6/2011, I had an appointment with my radiologist. With radiation therapy nearly completed, and a second Lupron injection soon to be administered, my radiological oncologist ordered another PSA test and the results were encouraging. My PSA had plummeted from 385.4 to 0.1 (not a typo)! When I was initially diagnosed, my PSA was well beyond the biomarker alert level that indicates the likelihood of prostate cancer. This does NOT mean that I am cured, but I am encouraged by this very promising response which holds out hope for longer survival and the possibility that I will die with rather than from my disease. I may even be around if and when a cure becomes available.
On 4/14/2011, I received my second Lupron injection.
On 6/9/2011, I had an appointment with my medical oncologist. I received my first in a series of quarterly infusions of the bisphosphonate zoledronic acid (Zometa) to counteract my osteopenia and resorption (breakdown and loss of bone mass) from ADT. Bisphosphonates prevent bone loss from demineralization by suppressing bone resorption from osteoclasts. An osteoclast is a type of bone cell that removes the mineralized matrix of bone tissue. Bisphosphonates induce osteoclast apoptosis (cell death), hinder osteoclasts from breaking down bone tissue, and may also stimulate bone-forming cells (osteoblasts) to produce a substance that inhibits osteoclast formation. I was required to take a blood (kidney function) test before infusion of Zometa. Blood work and another PSA test were performed. I couldn’t be more pleased with the results. Now undetectable, my PSA is below the lowest threshold that the test equipment is capable of detecting (< .05). Blood work also looked good.
On 6/16/ 2011, I had an appointment with my radiation oncologist. He performed a digital rectal exam. My prostate was of normal size, flat, with no palpable tumors. My radiation oncologist was pleased with my progress. I have resumed some exercise comprised of walking, cycling, and will likely do some light weight lifting soon.
On 8/18/2011, I received my third Lupron injection.
On 9/1/2011, I had an appointment with my medical oncologist. I received my second Zometa infusion. Blood work and a PSA test were performed. Blood work looked good and my PSA was again unmeasurable, or essentially zero.
On 10/20/2011, I had an appointment with my radiation oncologist. A digital rectal exam was performed. My prostate remains unremarkable (normal). A PSA test was performed and my PSA was 0.0.
On 12/1/2011, I had an appointment with my medical oncologist. I received my third Zometa infusion. Blood work and a PSA test were performed. Blood work looked good and my PSA was again unmeasurable, or essentially zero.
On 12/19/2011, I received my fourth Lupron injection.
UPDATE: March 9, 2012
Where the iliac sclerotic lesion is located, I’m currently experiencing bone pain managed by a generic form of Norco (10mg hydrocodone and 325mg acetaminophen), taken as required.
On 1/31/2012, tests, ordered by my urologist, were performed for re-staging of my disease (DEXA, CT and bone scan). The results are encouraging. Bone density remains approximately the same (stable) when compared to a DEXA scan performed on 12/21/2010. There is no indication of new metastasis and lesions exhibit activity that is less extensive and less intense than demonstrated by CT and bone scans performed on 12/2/2010. My urologist was pleased with my test results. Allow me to reiterate that this doesn’t mean that I’m cured, but at least I’m in a much better place for now.
On 2/27/2012, I had an appointment with my radiation oncologist. A digital rectal exam was performed. My prostate remains unremarkable (normal). My radiation oncologist was pleased with the test results ordered by my urologist.
On 3/1/2012, I had an appointment with my medical oncologist who was pleased with the test results ordered by my urologist. To manage my osteopenia and ADT induced bone loss, I was given the option of switching from intravenous infusion of Zometa to subcutaneous injection of Xgeva. Like Zometa, Xgeva helps prevent SREs in patients with cancer that has metastasized to bone. Xgeva suppresses bone remodeling (turnover) by binding to RANKL, a protein essential for the formation, function and survival of osteoclasts (the cells that break down bone). Xgeva prevents RANKL from activating its receptor (RANK) on the surface of osteoclasts, decreasing bone destruction. In clinical trials, Xgeva has demonstrated improved efficacy over Zometa in prevention of SREs without Zometa’s risk of kidney damage, but Xgeva can cause severe hypocalcemia (low serum calcium level). Consequently, calcium levels in the blood must be monitored and daily supplementation of calcium (1000 mg) and vitamin D (400 IU) is both prudent and necessary. Since I have two spinal compression fractures, I’m categorized osteoporotic. That entitles me to receive either quarterly Zometa infusion or biannual Xgeva injection. Given the choice, I opted to switch to Xgeva and received my first injection. Blood work and a PSA test were performed. Blood work looked good and my PSA was again unmeasurable, or essentially zero. At his juncture my disease is chronic, managed and stable. Things continue to look up.
Prostate cancer is the most common solid tumor.
Prostate cancer is the most common cancer that afflicts men, aside from skin cancer.
Prostate cancer is newly diagnosed in two men every five minutes.
Nearly two-thirds of men diagnosed are aged 65 or older.
Prostate cancer is present in 9 million men.
Prostate cancer afflicts 1 in 6 men in their lifetime.
Approximately 1 man in 36 will die of prostate cancer.
Prostate cancer is responsible for approximately 13% of cancer deaths in men
Prostate cancer kills 13 men every minute.
Prostate cancer is second only to lung cancer as the leading cause of cancer death in U.S. Men.
Men with a body mass index over 32.5 have about a one-third greater risk of dying from prostate cancer than men who are not obese.
Men with one close relative with the disease have double the risk of developing prostate cancer. With two close relatives, the risk is five-fold, and with three, the chance is 97%.
In 2012, approximately 241,740 new cases of prostate cancer will be diagnosed and approximately 28,170 men will die of prostate cancer.
Anticancer: A New Way of Life, David Servan-Schreiber, ISBN: 978-0718156848
A Primer on Prostate Cancer: The Empowered Patient’s Guide, Stephen Strum and Donna Pogliano, ISBN: 978-0965877770
Dr. Katz’s Guide to Prostate Health From Conventional to Holistic Therapies, Aaron Katz, ISBN: 978-1893910393
The Definitive Guide to Prostate Cancer: Everything You Need to Know about Conventional and Integrative Therapies, Aaron Katz, ISBN: 978-1609613105
Natural Strategies for Cancer Patients, Russell Blaylock, ISBN: 978-0758202215
Foods to Fight Cancer: Essential foods to help prevent cancer, Richard Béliveau and Denis Gingras, ISBN: 978-0756628673
Nature’s Cancer Fighting Foods, Verne Varona, ISBN: 978-0735201767
IP6 & Inositol
Bindweed (Convolvulus arvensis)
Modified Citrus Pectin
Fish Oil (Omega-3)
With radiation completed and my prostate normal in size, various supplements (Beta-Sitosterol, Rye-pollen Extract/Cernilton, Broccoli Sprouts Extract, Graviola, Ashwagandha, Cayenne, Silymarin/Milk Thistle, Alpha Lipoic Acid, Gamma E, Graminex PollenAid (Cernilton), Sutherlandia OPC) have been discontinued.