Taking Time to Reflect at the Outer Cape (Cod)

"By the weekend I've planned my escape, got a sweet bungalow at the end of the cape"

As I approach my upcoming major surgery, now just a few short weeks away, I had a wonderful opportunity to get away for a few days with my wife and daughter to a charming 1-bedroom cottage nestled in the dunes of Wellfleet MA. What a great way to clear my head and prepare for both the surgery itself and the dreaded aftermath 😧.

Sitting, running and surf-casting on this magnificent stretch of serene and near-empty beach (it's still the preseason) allowed me to also reflect on how grateful I am to be supported by such a wonderful wife and supportive family and friends. Combined with an inner drive to conquer this prostate cancer demon, I'm about as ready to tackle the next phase as I can possibly be.

Clinical Trial - 6 months down, 6 to go!

As a recap, I'm about at the halfway mark in a 12-month clinical trial at Dana-Farber: 

A Study of Apalutamide in Participants With High-Risk, Localized or Locally Advanced Prostate Cancer Who Are Candidates for Radical Prostatectomy (PROTEUS).

Strangely I was both fortunate and unfortunate to get into this study. The unfortunate part is obvious. If I were going to be involved in any type of health study why couldn't it have been something like a study designed to prove that eating ice cream while watching TV can help with both athletic performance and longevity? But instead, this is the study I was chosen for. 

I almost didn't get into the study because there were a whole bunch of qualifying conditions. You had to have high-risk, advanced prostate cancer - check. They were looking for prostate cancer that had not metastasized outside of the prostate bed - check. CT and bone scans had to be clear - check. Heart function had to be normal - check (but more on this later). And a complete blood test had to have all values in an acceptable range - fail😖!

Unfortunately, there was one blood test called AST, not to be confused with ADT (more on that below), that tests for liver function. I think my AST was a 36 or something, which was on the high side of normal according to the range my provider uses. Unfortunately, the clinical trial uses a different range and required that AST be under 36. I felt like a contestant on the Price is Right that got beat out on an item because the contestant after me guessed a dollar less than me. Fortunately, they did a retest a week later. 33, score! Cutting out alcohol seemed to do the trick. Unfortunately, this wasn't a one-time test. AST would continue to be tested monthly along with all the other values. To remain in good graces with the study, I'd have to give up Alcohol for a year! Over the course of the first few months, I eventually eased off a little and got to a point where I could allow myself a drink or two on the weekends and still keep my AST in the acceptable range.

ADT

I officially started the trial on January 6th, 2021. The trial involves 4 quarterly injections of a drug called Leuprolide which is the drug of choice for a treatment called Androgen Deprivation Therapy (ADT). ADT is a known adjuvant treatment for men with prostate cancer. It's not quite the same as what you think of when you think of chemotherapy but can be thought of as a specific type of "hormone chemotherapy" specific to prostate cancer. It works by shutting down testosterone creation, a known "fuel" of prostate cancer. It is not a cure in itself but has been proven to limit and even shrink prostate tumors both in the prostate itself as well as micro cancer cells that have or could metastasize to other parts of the body. It is typically used prior to radiation, another common treatment for prostate cancer. The hope with this study is that ADT will shrink the tumor(s) in and around the prostate to improve the odds of a cure to something better than 50% which would otherwise be the cure rate for someone with high-risk, advanced prostate cancer who opted for surgery alone.

In addition to ADT, this study is evaluating a test-drug called Apalutamide which works in conjunction with Leuprolide and aims to block any remaining testosterone in my system from getting to the cancer cells in my prostate. Apalutamide comes in pill form, and I take 4 daily. But the 4 pills I'm taking could also be a placebo - this is part of the study.

Back to ADT. ADT sucks. When you zap a normal male of all/most testosterone, some weird side effects unfold. The big ones are fatigue, hot flashes, loss of bone and muscle mass, increase in fat and, changes in one's emotional state. 

Here's a really good, easy-to-read article describing the effects: ADT What You Really Need to Know. I took these words to heart:

But hear these words:  You will need to fight what it’s doing to do to the rest of your body, even as it saves you from your prostate cancer.

You will need to get mad at it.  Work hard to take back your life – work doubly hard, because not only will it try to turn you into a tub of butter, but you might get mildly depressed.  Your brain will tell you that you’re too tired to exercise.  It’s deceiving you.  You must not listen to it.  Exercise anyway.

Here’s what you’re up against:  Normally, if a man wants to lose a pound, he needs to burn 3,500 calories.  A man on ADT who wants to lose that same pound needs to burn 4,500 calories.  He’s slogging upstream with ankle weights.  His metabolism is slower, his sugar metabolism is messed up, his blood pressure may be higher, and for many reasons, he probably feels like crap.  Maybe he stops taking care of himself.   This is the worst thing he can do.

For me, the effects have not been as terrible as I had dreaded going into this. I credit this to healthy eating (mostly plant-based, whole foods) and daily cardio and weight workouts which I consider a necessity. I can still do the same 10 pull-ups that I could do before treatment and am able to still get in runs and bike rides of over an hour+. My speed and pace are a little off, but I'm taking the year off from racing anyway for obvious reasons. But I am treating this period as though I am training for a marathon or an Ironman. The format of the 'race' I'm training for just looks a little different this year. 

Heart Scare

In May, at the 5-month mark, I had a bit of a scare involving my heart. I consider myself to be pretty healthy for a 59-year-old. Even on ADT, I'm usually running a little over 9-minute mile pace and never have any issues other than the typical foot or tendon issues. But I have been dealing with high blood pressure for about 10 years now. During this time, I've been on the first level blood pressure medication prescribed by most physicians referred to as a diuretic or water pill. 

Despite recently losing 20 pounds and making positive changes to diet and exercise, a healthy blood pressure still eludes me. So my doctor told me to start checking my BP daily (which was consistently coming in around 135/85) and ultimately added a second BP med call Amlodipine. He also temporarily had me stop taking the test drug Apalutamide as a precaution. 

Amlodipine helped with getting my BP down closer to normal, but my daily checks also revealed frequent irregular heartbeats coming from my Omron home blood pressure monitor sometimes coupled with shortness of breath. My doctor told me to go to the ER if this happens again, which I did. Twice 😓. There, I found out that I have a condition called bigeminy PVCs. Not life-threatening, but not normal either. Basically, for unknown reasons, my heart gets into a mode where it starts doubling beats. My doctor referred me to a cardiologist who was able to determine that this was likely a pre-existing condition that I just never knew about. My doctors were concerned about whether the ADT or Apalutamide drugs could be exacerbating this. But there's really no way to know for sure. I will be monitored over the next few months, but for now, I was given the green light to start retaking the test-drug Apalutamide and to resume the study. 

The Surgery

After a few pre-surgery appointments in mid-June, the plan is for my surgery to happen at the end of June. I'm dreading it. Not just the surgery itself, but the expected side-effects coupled with 4-6 weeks of complete downtime, i.e. no weigh-lifting, running, or biking. 

The full name for the procedure is Robotically Assisted Laparoscopic Radical Prostatectomy. That's a mouthful. I would have much preferred the name "Kinder, gentler Prostatectomy", but I couldn't find this procedure anywhere. 

Here's a photo of the procedure courtesy of NCBI, NLM, NIH. That would be my body over to the right with probes sticking into it, while the doctor practices his XBOX Call of Duty skills in the space-aged console on the left. In all seriousness, I have mad respect for these surgeons!

Here's a video of the procedure:

As I understand it, the surgery typically takes 2-4 hours and is pretty involved. Though it is minimally invasive due to the Da Vinci machine operated by a skilled surgeon, there is still a lot of cutting, cauterizing, suturing and general "replumbing" going on on the inside. Assuming that all goes well, I am hopeful that the typical side effects won't last too long or, God forbid, become permanent issues I have to deal with. But the main thing is getting the cancer out of there. A very important outcome will be whether the surgical margins are positive or negative. That determination will be made once everything is removed and will ultimately determine whether they "got it all" or whether follow-on radiation will be required.

My surgery gets slightly more nerve-racking (no pun intended) due to the clinical trial I'm participating in. Apparently, some men have had complications with blood clots during/after surgery as a result of the ADT and/or test drug. Due to that complication, they are now using blood thinners as part of the trial surgery. Not super great, but hopefully still pretty routine. 

I'll wrap this post the same way I began, with a quote from a song (and a link if you feel like listening). "A good day is any day that you're alive. Yes a good day is any day that you're alive"

Cheers!