Damon Phinney
Boulder, Colorado
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Founder and forum moderator of Cyclists Combating Cancer
I started riding a bike "seriously" back in 1952 when I was living in western Ohio where I had taken my first job after graduating from the University of Massachusetts as a mechanical engineer. My best one-day ride back in those days was 225 miles in 12 hours on my Raleign touring bike, during a race in Pittsburgh. I was 4th that day, against riders on racing bikes. I also became an avid hiker, camper and climber, spending my 2-week summer vacations in the Tetons and Wind Rivers of Wyoming. In 1956 Thea and I were married and moved to Boulder where there were more opportunities to enjoy our outdoor recreation interests. Alice was born the following year. She inherited our athletic interests and channeled them largely toward hiking, climbing and camping while also becoming a mechanical engineer. A son named Davis, who would become a pretty good bike rider one day, arrived two years after Alice. I rode that old Raleigh for 25 years before Davis's example made it obvious that there were better machines for getting up in the mountains starting right at the edge of our town.
Prostate cancer arrived in 1987, or should I say it was diagnosed that year. The symptoms had been present for quite a while, but who knew much about that kind of cancer in those days? It was just benign enlargement of the prostate and easily corrected, right? Wrong! When the "athletic injury" that had been causing pain in my right sitbone for 6 months was figured out, it proved to be cancer that had metastasized from primary cancer in my prostate. There were two more "mets" in my spine.
Prostate cancer that has escaped from the gland and migrated to "distant" sites in the body, even if only to lymph nodes a few inches away, is incurable. It is only treated for control for as long as possible. Cancer that has metastasized into the bones is more serious, with a shorter life expectancy...only a few years even if there are only a few of those mets.
There was only one effective treatment for "advanced" prostate cancer in 1987 and that is still true now, in year 2000. Growth of prostate and prostate cancer cells is stimulated by testosterone. Deny those cells that stimulation and in most men the cancer will undergo some shrinkage for a time...its growth will be "controlled" for a while. Unfortunately, cancer cells that don't require hormonal stimulation become predominant after a while and the cancer is off to the races again. Then it may be necessary to use radiation to halt dangerous progressions in the bones and, later on, chemotherapy as a last-ditch measure. Chemo has not been very successful with prostate cancer and is usually used only to hold off pain shortly before the final chapter is ending. Chemo may or may not offer a small increase in life expectancy.
Cancer Overview:
General Cancer Type: Prostate
Specific Cancer Type: Metastic Prostate Cancer
Treatment Summary:
Combined hormonal therapy (CHT). In late February, 1987 I began taking a drug (Lupron) that caused my testicles to stop making testosterone. A few months later I added a second drug (flutamide) that tied up receptors for male hormones made in my adrenal glands and prevented them from stimulating growth of prostate and prostate cancer cells, as well as all other cells stimulated by those hormones. This treatment is significantly emasculating. It causes loss of libido and potency, and loss of muscle strength, while encouraging weight gain with growth of subcutaneous fat, Body hair is reduced. This is like going through puberty backwards. Many men experience serious hot flashes. Several other undesirable symptoms of the "hormone deprivation syndrome" develop over time, most serious of which is memory loss.
I was extremely fortunate with my response to CHT. I went into complete remission. Within 6 months my prostate had returned to normal and after 2 years the bone mets had disappeared completely. This remission lasted until 7 1/2 years from diagnosis, when my PSA, which had been essentially zero, began a gradual rise. During this time I had continued on the CHT and would continue it until 11 years had passed, when I finally learned that its effects on testosterone production had long since become permanent.
At the end of 9 year the primary cancer in the prostate had come back as well as the metastasis in my sitbone. At that point I began an experimental treatment that completely shut down my adrenal glands and I went into a partial remission lasting for 17 months. During that time my PSA and the cancer remained stable, but then the cancer started growing again. I had become "hormone refractory" which meant that treatment with hormonal therapy was no longer beneficial. There were no other conventional medical treatments available for me except chemotherapy, which would only be used as a last resort.
For about 2 1/2 years I tried several different alternative treatments, ones which had not been proven in rigorous clinical trials. During this time the bone mets continued to grow and by the spring of 2000 had invaded my skeleton with more than 20 sites spreading from my left tibia to my sternum. Soft-tissue cancer had spread locally in the vicinity of the prostate and into my bladder, where the ureter openings were partially blocked. This blockage required insertion of stents (plastic tubes) down from the kidneys to avoid kidney failure. I also had radiation to the cancer in my pelvis and to one section of my spine.
By the spring of 2000 I had found an alternative treatment (flaxseed oil mixed with cottage cheese) that had stopped growth of the soft-tissue cancer and had started shrinkage of the cancerous lymph nodes but the bone metastases were continuing to grow. I then began an experimental protocol at the National Cancer Institute evaluating the chemo agent taxotere, plus the anti-angiogenesis agent, thalidomide. My belief was that if this would stop growth of the bone mets, the flaxseed oil/cottage cheese, which is beneficial for many kinds of cancer, would be able to hold me in another stable remission of significant duration. At this time (September 2000) I am still being treated with the drugs, my bone mets have been stablized and my soft-tissue cancers are shrinking. In a few more months I will discontinue the chemo and find out whether the flaxseed oil will hold me in remission again.
Coping Strategy
It was obvious that I would need to do something to help me deal with a treatment that would eventually fail and which would be quite emasculating during the rest of my shortened lifetime. I would need to try to find something that might enhance my response to treatment and help me live longer than the few years of median survival. My cancer was Gleason Grade 7, on the borderline with the most aggressive kind. I began reading widely about things that might increase my response to treatment and made big changes in my diet while adding numerous vitamin and mineral supplements. It isn't possible to know what effect these have had but it is now 13 1/2 years since my diagnosis and I am probably in the last 5 to 10 percent of men still living who had similar diagnoses in 1987. My survival may have been because my cancer was a little less aggressive (it is now Gleason Grade 10, the most aggressive grade), my body may have been more resistant to cancer, or I may have been helped by the things I did to help myself.
It is now known that our immune systems are affected by our emotions. Depression depresses immune system activity. Positive emotions enhance it. The immune system is responsible for disposing of the cancer cells that all of us produce daily, whether we have cancer or not. I would need to do something to help me avoid depression from the emasculating effects of hormonal therapy, and especially the loss of muscular strength and potency. I decided to increase my bike riding, which I had continued but at a lower level during the years that the kids were growing up. I thought that if, by riding enough, I was able to keep up with most of my peers on rides around Boulder and in the mountains, I would probably feel pretty good emotionally. I upped my mileage substantially to the point where, 12 years after starting treatment for cancer, I had accumulated 50,000 miles. Many of those miles had been on big climbs in the foothills west of Boulder and on the biggest passes of Colorado as well as the most difficult climbs in the mountains of France and Italy. And I had found that I could indeed stay with my age peers on a bike, as well as a great many younger riders. So all that time I had felt good about myself in comparison to other guys. I had also benefited from hundreds of hours out in the fresh air, the wind and the sun and the beauties of nature. There was never anything quite like completing a long difficult climb or a fast solo Century on more level ground to prove that I was still all right in body and mind. I needed a lot of those proofs and eventually there had been hundreds of such rides. They not only made me feel good, they also helped my immune system work better. I do not doubt that they have been a factor in my long survival with an incurable cancer that probably should have killed me years ago.
Stories:
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