October Update! Taking this One Hurdle at a Time

 

Having spent many a spring season hanging around tracks in both high school and college, you would think I would know a thing or two about hurdles. The truth is, I was a distance guy and never paid much attention to the event, other than thinking it was just something to get over with in order to get to my beloved mile or 2-mile. But I was always impressed by hurdlers' abilities to seemingly fly over these objects at high speed with ease. I never took the time to understand the difference between all of the various hurdle events. It turns out there are over 5 different hurdle heights that vary based on the type of competition: high school or college? Men's, women's? Distance 110m, 200m, 300m, 400m, steeplechase. You get the idea. 

A "Stretched" Metaphor - Bear with Me

So, what's the point? As I reflect on my journey to this point, as well as what lies ahead, the hurdle event becomes the perfect metaphor, albeit a little stretched.

Unlike a traditional hurdle event, in my imaginary hurdle race, every hurdle is a different height. Some are low and relatively easy to get over. But some are high, embodying all of the anxiety, risk, and reward of successfully clearing them. Also unique to my race are the distances in between hurdles. Some are close together, but some are more like the dreaded water pit in the steeplechase and only come around once per lap. These are the doozies. Hard to get over anytime, they become exceedingly difficult as the race goes on and exhaustion sets in.

Finally, my race has no discernible finish line I will ever cross. This is a lifelong race. My best hope is that the hurdles get smaller and become more routine - a quick lift of my lead leg and I'm over. Easy peasy, boring even. Yes, that's my goal. Keep the tall ones behind me.

The Big Hurdles

My journey thus far has been marked by 4 steeplechase-worthy, high hurdles, and a series of lower hurdles scattered in between. The 4 high hurdles so far have been: 

• Diagnosis back in December 2020
• Beginning of treatment in January 2021 (clinical trial: ADT + Test drug/placebo)
• Surgery in June 2021
• Unblinding of my PSA values starting in September 2021 - more on this below

Timeline view: Spikes Prostate Cancer Timeline

In between the tall hurdles have been the shorter hurdles corresponding to my monthly check-ins at Dana-Farber as part of the 12-month clinical trial that I'm participating in. Those ones are pretty easy to get over involving a 90-minute trek up to Boston for a series of back-to-back appointments. My lead-off appointment is at the blood lab on the second floor of the Yawkey building at Dana-Farber. Five or six quick vials of blood and I'm done. Kind of ironic actually, because I stopped donating blood years ago after a near-fainting episode. This must be my penance. After the blood work is a series of appointments with my oncologist, representatives from the clinical trial, and an ADT injection in the treatment room if called for.

The blood tests are pretty comprehensive with names like "CBC and differential", "comprehensive metabolic panel". But then there's a "secret" blood test that only shows up on my medical record as "X-Label/study" with no values contained within. This last one goes straight to the clinical trial team and the value is blinded to both me and my doctor. What is this top-secret blood marker that is hidden from both me and my oncologist? Ironically, it's the basic PSA -  probably one of the most important determinants of the presence and trajectory of prostate cancer there is.

A Refresher on PSA

PSA monitoring takes on a number of important roles in the battle against prostate cancer. First, for healthy men over 50 (earlier with family history), the PSA check is a simple routine blood test that should be ordered as part of the annual physical. There are no hard and fast rules, but a value over 4 is typically the point at which additional tests are ordered. Of equal significance to the absolute value is the trend. A value of 2 one year might tend to be ignored as being safely under the guideline. But should that value of 2 become a 3 or 3.5 the following year, a primary care doctor who is on the ball should treat this sudden ramp-up with the same urgency as a value > 4 and order more tests or recommend a referral to a urologist right there and then. This is in my humble opinion. I'm actually not even sure what the standard of care is on rising PSA values under the 4.0 cutoff. In my case, looking back, there was a clear trend of increasing values over serveral years, but no one rang the alarm bell until my values were well over 5. But I need to look forward and not back.

More on guidelines from The American Cancer Society because this is important:

Most men without prostate cancer have PSA levels under 4 ng/mL of blood. When prostate cancer develops, the PSA level often goes above 4. Still, a level below 4 is not a guarantee that a man doesn’t have cancer. About 15% of men with a PSA below 4 will have prostate cancer if a biopsy is done.

Men with a PSA level between 4 and 10 (often called the “borderline range”) have about a 1 in 4 chance of having prostate cancer. 

If the PSA is more than 10, the chance of having prostate cancer is over 50%.

In cases where follow-up tests have been confirmed to be negative or where follow-up tests revealed a low-grade type of prostate cancer, doctors will often recommend a protocol of watchful waiting (also known as active surveillance). PSA tests are the primary monitoring mechanism.

For men who have undergone some type of treatment: surgery, radiation, hormone therapy, etc, the PSA tests are looked at through a slightly different lens. For these men, the PSA values should normally be near zero (anything under 0.20 is typically considered undetectable, but this depends on the lab and doctor). [Note: After radiation, the new baseline might be slightly higher]. Regardless, in these cases the old PSA > 4 rule sort of goes out the window, and what becomes more important is whether the PSA value remains low or increases over time. It is the rate of increase, or more specifically the rate of doubling, which can become an indicator that the remaining prostate cancer cells are spreading. A much better explanation can be found here: Prostate Cancer Foundation

My PSA - Unblinded

My post-diagnosis experience with PSA testing is very different than most given the Proteus clinical trial that I am enrolled in. As mentioned in other posts, I began the clinical trial in January 2021 and it will conclude in December of 2021. While I believe in this trial (otherwise I wouldn't have chosen to participate) I am completely baffled with why the designers of the trial thought it would be important to double-blind the PSA test to both the patient and their doctor. I can see using a double-blind protocol for the test drug, Apalutamide, which is also part of the clinical trial. But blinding the PSA? Per rules of the trial, the PSA values would be blinded until month #9 (also referred to as cycle #9), which also corresponds to the 3-month post-surgery mark. Per the study, my PSA would be checked every month and reviewed by clinicians running the study, but hidden. Since there is a strong presumption that the ADT would do its job and keep my PSA value low, both before and after surgery, I can only surmise that the trial designers didn't want the patient or doctor to alter course on slight variations in PSA. Should the PSA rise above acceptable levels, the trial had an escape clause where the trial folks would immediately reach out to the doctor and the patient would be taken out of the study and could seek alternate treatment. In my case, fortunately, this never happened, but what a huge leap of faith I had to take.

Enough rambling already. What was my first unblinded PSA value in September? The envelope please .... it was a < 0.02, also considered undetectable. 

My wife and I had a huge sigh of relief over this much-anticipated number. On the one hand, this was a preliminary affirmation that the combination of ADT plus surgery was working, so far. On the other hand, the ADT is still acting like 'training wheels' of a sort. And each subsequent monthly [unblinded] test will continue to have increasing significance. Back to the metaphor. From now until January while ADT is still doing its thing, these will be medium height hurdles that I must clear with low, non-increasing PSA values. 

Come January, I will hit a steady course of high hurdles. My last ADT injection was in September and is effective for 3 months. So my hormone levels should begin to normalize by late December and should be back to full normal values in 3 to 6 months after that point. That will be the real test of whether there are remaining prostate cancer cells that have lingered in the area where my prostate used to be or, worst yet, have metastasized to somewhere else in my body, requiring a whole new game plan of additional tests and treatments.

I am hopeful that that clinical trial combination of ADT + Test Drug + Surgery in conjunction with all of the other actions I am taking (WFPB SOS-Free diet, intermittent fasting, rigorous cardio & strength exercises, and meditation) will all tilt the balance in my favor. For more info on what I'm doing, see my earlier post: Throwing the Kitchen Sink At Prostate Cancer

If all goes well after this next series of medium and high hurdles, I can settle into a steady and boring cadence of low hurdles from mid-2022, until, well, forever. 

That's all for now. Take care and, as always, thanks for reading and thanks for your continued support. Feel free to leave a comment after this post or drop me an Email whether you're a friend/family or just happened to stumble on this post.