In my job, I meet a lot of interesting and dedicated people. One of the most recent was Rick Davis, a Bay Area patient and prostate cancer advocate. Rick has co-moderated a prostate cancer support group in Marin County and sits on the Prostate Cancer Advocates Committee at UCSF Medical Center, assuring patient care, as well as developing prostate cancer patient information materials. He is an active athlete and is also working on a unique program to more proactively link exercise to patient treatment plans for all serious and chronic illness.
As we met over lunch we swapped stories of our experiences with androgen deprivation therapy (ADT). Rick’s experience was particularly extreme. He was so affected by his time on Lupron that he had to file for disability. We agreed that each man is affected differently by the spectrum of potential ADT side effects. Some men are fortunate enough to barely notice a difference. Others are prone to every side effect on the list. The severity of the side effects also varies greatly from man to man. Most men I talk with are–to say the least– surprised by the experience. Rick and I agreed that, from our perspectives and responses to treatment, ADT is a form of slow drip chemo–something most bystanders don’t understand and that perhaps many physicians don’t appreciate from a patient’s point of view. Still, the benefits far outweigh the downside.
I asked Rick to pen a guest blog entry and he graciously agreed. I wonder if readers will agree with our “slow drip chemo” characterization.
Twenty-eight months of hormone therapy does not sound like much considering the benefits –your life. But nobody tells you how many functions of the male body can go awry without an assist from your macho hormones that turn 120 pound weaklings into Charles Atlas and Plain John into Casanova.
Three months find you fanning your brow as you swelter in mid-winter. At six months you could be wondering how you might have failed to notice Julia Roberts pass under your nose. And yes, you are always hungry – not for healthy victuals but the carbs, ice cream, and chocolate your wife and friends crave. It’s quite possible to add a quick 20 lbs while not being able to find the motivation to hit the gym… not to mention the strength or endurance once you get your sorry butt there.
By nine months you are cursing this slow drip chemo. ‘Lupron Brain’ lowers you into the constant fog of a San Francisco July; it’s hard to concentrate for more than 120 seconds since you lose track of the first sixty. The wretched combination of fatigue, depression and anemia, the same three musketeers that duel with brain cells in chemotherapy patients, all result from a lack of testosterone. Surprisingly and contrary to expectations, a fuller mane above is covertly offset by loss of cover elsewhere on our pre-pubescent body.
Yet, so many well-meaning folks tell you look so healthy, producing emotional twinges of guilt for feeling as crappy as you do.
After 12 months, we know the systems are all awry; the liver may be inflamed, cholesterol rockets, the heart beats to its own testosterone-less drum; and one task per day can lay us flat. Our medical gurus never mentioned all the issues we might well have noted by carefully perusing the pharmaceutical disclaimer.
It’s fair to say, every man reacts differently to hormone therapy. Few hit the jackpot of every side effect with a 5% or less incidence. My bogeymen were liver and anemia; Dan’s his arrhythmic heart, fatigue and momentary brain fogs. In the worst cases, some poor souls who have never received a visit from what I call the emotional ‘black dog’ spiral further into depression. For many men the simplest and safest antidote is daily exercise – perhaps the subject of a future post.
Hormone therapy, like chemotherapy, is systemic. Contrary to many chemo treatments it does not assault the system; it creeps up like too many birthdays. Men facing just 4-8 months of adjuvant therapy in combination with radiation are frequently off the ‘juice’ before much more than the sweats. Those facing longer treatments find an exponential deterioration in their quality of life beyond 12 months. Several doctors have disclosed, NOT upfront mind you, that some men cannot endure more than 12 months before coming off the LHRH (luteinizing hormone-releasing hormone) drugs.
Intermittent therapy, going on and off hormone therapy, balances Quality of Life factors with controlling the prostate cancer; but this is more in line with recurrent disease. It must be managed for a lifetime stretching the period hormone therapy is still effective. For men receiving neo-adjuvant or adjuvant hormone therapy in the hope of finding the elusive C-word grail – CURE, different studies suggest continuous therapy for 18-36 months. In line with Dan’s recent post, there is a developing school of thought that the LHRH drugs do the bulk of their work in the first 12 months; thereafter the benefits are marginal and easily outweighed by QoL and medical co-morbidities.
Either way, those of us who have lasted the longer course as well as several enlightened practitioners, are in agreement that treating doctors do a poor job preparing men for their rough ride along the hormone therapy journey. Over the past 18 months I have provided a catalytic function to produce a comprehensive UCSF ‘Your Health Matters’ pamphlet for men considering hormone therapy, long or short. While still in draft, I am happy to share with any of you that follow this blog. And for those of you well along the Lupron highway – keep the faith …. onwards & upwards!