Friday, August 26, 2011

A “Must Read”….

I follow a blog by a fellow prostate cancer survivor… His name is Dan Zenka and he is the senior vice president of the Prostate Cancer Foundation.  He was diagnosed with prostate cancer in April of 2010… His blog can be read at My New York Minute.  He became friends with another gentleman, Rick Davis, going through a lot of the same issues with prostate cancer and the long story made short, he asked Rick to write a posting for the My New York Minute blog.  It is an amazing write up of what I have been wanting to write about for some time… With Rick’s permission, I am posting it below.

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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!

–Rick Davis

You can contact Rick at “medafit@gmail.com” .

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Rick is currently (in his words) “trying to identify a connection to a national health club chain to initiate an exercise program for folks living with serious and chronic illness; we have set up a couple of successful pilots here in the bay area.  I have many of the other building blocks in place and hope to get something up and running asap.”

I’ll comment on some of Ricks thoughts in an upcoming post… but for now, he has told it like it REALLY is… at least for a lot of us!

Until next time....

Posted by John on 08/26 at 09:58 AM
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Tuesday, August 23, 2011

Trial on Hold…

A lot has happened over the past month or so… I have been pain free since the week after radiation to my hip… I cancelled one oncologist appointment...and instead got in to see a much better oncologist (IMHO) at The Tom Baker Cancer Centre. The appointment with my current oncologist was 3 weeks earlier than the original appointment with an oncologist I did not want to see. I cancelled the appointment I had with him.

My PSA levels have gone down a little since starting the Casodex… so for now, we are going to just continue on it and watch closely for any rise… once that happens, I will enter a clinical trial for MDV3100… the oncologist has a few patients that have been on it for 3 years or more with PSA levels below 1.0 for the entire time. There is just no guarantee that I will get the drug on the trial...could get a placebo...so he feels it’s best to stay on the Casodex while it’s working… Abiraterone isn’t available for use at this time… If / when it is approved for use in Canada, he says he will put me on it right away.

Right now things seem to be going quite well… I am getting used to the new lower levels of energy… managing to get in a workout or two a week, with added rest… a lot of stress has been lifted since meeting the oncologist… Life is Good!

Until next time....

Posted by John on 08/23 at 10:01 AM
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