One of my closest and dearest friends is having a prostate biopsy today (“Prostate Cancer – It’s All The Rage!”), so in his honor and now that your breakfast is done, let’s discuss a procedure that many men will reluctantly…submit…to – and should, if the need arises.

Honestly, it’s not that bad, but there are some things a man should know before the urologist goes exploring. (Hang in here – there’s a cool reward at the end.)

Until fairly recently, “exploring” really was the appropriate term. If the urologist conducting a digital examination (use your imagination and see the reward below) felt a bump, well that was bad – but it also was good, because at least he or she knew where to poke the guy with the biopsy needle.

Most of the time, that is not the case. A rising PSA without any other information left the urologist/explorer with little choice but to, I don’t know, hunt and peck. Usually, with 10 to 12 excavations.

Hit or miss.

Maybe the procedure would discover malignant cells that could be studied and staged, maybe it wouldn’t. Maybe that meant the patient was cancer free; maybe it meant that the urologist understandably guessed wrong and missed the mark.

Now, there’s a better way.

It’s called an MRI-guided prostate biopsy, and this is what a patient should request, if the need arises. In layman’s terms, an MRI scan is generated to search for suspicious lesions. Using that data, the urologist has a much better chance of focusing the procedure and finding a malignancy or, with greater confidence, ruling out malignancy.

Either way, the biopsy itself is not a big deal. The doc generally goes in from the rectum, injects the patient with the urological equivalent of novocaine, waits a few minutes and then extracts 10 to 12 samples of tissue. The patient feels the injections of pain killer, but little else after that. (Pro tip: Never refuse the local anesthetic. Another friend once did that. He won’t do it again.)

If the suspicion is particularly strong, the docs will conduct a “saturation biopsy,” which merely means that they are extracting about 20 samples rather than 10 to 12. Hey, the more the merrier, right?

Information from actual experts at the Mayo Clinic about risks, side effects, etc., can be found here:

https://www.mayoclinic.org/tests-procedures/prostate-biopsy/about/pac-20384734

In my case, the initial biopsy – a 12-plug event in April 2015 in response to rising PSA scores – came up empty. Good news! Or so it seemed.

But the PSA kept rising, so we did it again – this time with an MRI-guided saturation biopsy in May 2018 that focused on a suspicious lesion identified by the scan. Pay dirt. Damn it. That led to treatment then and more intense treatment now to deal with the more serious recurrence.

Bummer, but much better to know than not to know – survival and/or longevity are very much in play here. So…keep an eye on that PSA and don’t duck a biopsy if the experts recommend it.

That’s today’s lesson boys (and girls) about prostates and biopsies. Since you’re been such a good class, here’s a brief clip of actors Danny Devito and Michael Douglas (in real life, great buddies) doing the deed, so to speak. It’s from the terrific Netflix series, “The Kominsky Method.”

https://9gag.com/gag/aerE79B

A brief examination (you should pardon the expression) of a definitional distinction.

The question: Am I on chemo?

The answer: Yes. No. Yes. And not yet.

Medically, I’m the target not the archer, and I’d be pleased to receive any directional adjustments, but as I understand it, the distinction is this:

• The hormone deprivation therapy that two high-tech, high-priced drugs are working to deliver unto me weakens and sometimes kills cancer cells indirectly by depriving them of the food they need to survive and thrive. That food being the male hormone called testosterone.

• True chemotherapy is intended to kill cancer cells directly. No playing around with the cells’ nutrition. “Hi, I’m chemo, and you, Mr. Cancer Cell, are now dead.” The problem with that: It also kills perfectly healthy cells, thus the hair loss, nausea, and other harsh side effects associated with chemotherapy.

The complication for laymen and laywomen is that hormone deprivation therapy is delivered by…chemicals. Powerful chemicals that I seem to be receiving by the vat-load and that carry their own delightful side effects.

So, it is therapy via chemicals and yet, technically, not considered chemotherapy. (If and when the hormone deprivation stuff stops working, then I’ll graduate to the post-doctoral degree of true chemo.)

The other complication: The real heavy hormone-deprivation artillery – that high-priced drug called Erleada – arrived the other day in something just short of a lead box. As you can see above, the outer box – shipped overnight with first early-morning delivery – was marked with attention-getting labels. And the inner envelope was marked “Chemotherapy Drugs.”

The only thing missing was:

So, one can appreciate that the definitional distinction here is, indeed, pretty slim.

Which I may or may not become myself. Thin, that is.

Hormone deprivation drug No. 1 – Firmagon – tends to add weight to the patient. (When this round started, I just had managed to shed that weight from an earlier version of Firmagon, but…enough of that.)

Hormone derivation drug No. 2 – Erleada – tends to suppress hunger and cause weight loss.

“So, the stage is set, ladies and gentlemen, for a heavyweight-lightweight battle of the drugs. At the moment, Drug No. 1 has a slight lead. But Drug No. 2 is known to make strong comebacks.

“Stay tuned! More details as they become available. And, of course, we’ll have all the latest news. Tonight! At 11!”

If you watch pretty much any TV at all, you’ve heard that tag line at the end of many pharmaceutical commercials. It might apply to any therapy, but it really applies to astronomically priced biotech drugs recently approved by the FDA for various cancers and other extremely serious diseases.

This post is intended to help patients navigate their way through that system – a road map for acquiring the assistance that is available to them and vital to their survival.

As mentioned the other day, the novel specialty drug – Erleada – prescribed as part of my pharmaceutical cocktail, carries an eye-popping list price of $13,407 per month, and I’m likely to be on it for the rest of my life – or at least until it stops working.

Now, rest easy. We’re doing financially OK here at Rolling With The Punches Central, but it wouldn’t take long for that kind of money to shift us into not-really-doing-so-OK-anymore territory. As an insurance expert at our oncology specialist’s office said: “No one can afford that kind of money.”

So, that angel, Miss Rebecca, jumped right on it. It took her less than two days to find a foundation that immediately agreed to shoulder co-pays for Erleada. And the other specialty drugs I’m taking. And any prostate cancer-related co-pays charged by physicians, including the doctors in Rebecca’s own office.

Everything. It is picking up any and every co-pay related to anything medically or pharmaceutically related to prostate cancer. The assistance remains in effect through the calendar year. According to Rebecca, it will be renewed without complication every year from now on.

Can I get a universal “Wow?”

This organization is called The Assistance Fund (TAF). It’s been around since 2009 and has helped 135,000 children and adults. It’s supported by numerous donors, large and small.

This is the first thing you see on TAF’s home page:

“We’re Here to Help. No one should go without treatment because of an inability to pay. That’s why we work every day to ensure you can access the treatment you need. See if you are eligible for one of our more than 70 disease programs.”

Note that it serves people dealing with many diseases, not just prostate cancer. Individuals can apply, though I’m thinking it’s more promising to have an expert in this sort of thing – your version of my doctor’s Rebecca – apply for you.

Here’s the link:

https://tafcares.org

And here’s the thing: TAF is one of many such organizations. Some are funded directly by pharmaceutical firms, others by organizations similar to TAF or by some states or by some insurance companies. Military veterans have special access to similar programs. Google is your friend – if you find yourself in this situation, which I hope you do not, search for your drug’s name and “financial assistance.”

All of this said, be prepared to be your own advocate.

I noticed on the specialty pharmacy’s website that my Erleada prescription – written a week ago Monday with something of a sense of urgency by our oncology expert – had been in a holding pattern since Friday. I called the pharmacy first thing this morning. The reason for the delay: A missing digit in The Assistance Fund’s BIN code as submitted to the pharmacy.

Luckily, that information was on the confirmation of coverage TAF sent me last week. We fixed it. It’s cool now. The stuff is being FedEx’ed straight to our house and should be here tomorrow, followed every month by refills. (It’s unclear how long the delay might have persisted if I had not made that call today.)

The lesson: Seek assistance at every turn, but remain alert and involved. Balls will get dropped, and you’ll need to pick them up and toss them back into play.

—

Also pharmaceutically, we had a pioneering moment last night. During the evening news, we saw a pharmaceutical commercial we’d seen a gazillion times without giving it much thought. When it ended, we suddenly realized: “Hey. That’s us!” First time that ever happened.

It was a commercial for Prolia, the bone-strengthening injections recently added to the menu.

Small world.

True story: A few months ago, a plumber attempting to resolve a drainage issue in our main shower discovered something never before seen.

It turns out that the guy who did the original tile work on our then-under-contruction house, employing more creativity than…level-headed vision, jury-rigged a solution to a misalignment of the two pieces of the drainage thingie. (I clearly have reached the outer frontier of my plumbing and tiling knowledge.) Basically, the two pieces – a bottom installed by the plumbing contractor, a top by the tile contractor – are supposed to screw together to form a leak-proof single drainage…thingie.

The tile guy miscalculated. He left a gap and, I guess, the tile already was locked down. The two pieces could not reach each other. What to do? What to do? Let’s pause and take a sip of milk and…EUREKA!…he knifed off the top of the plastic milk bottle and used it to form a makeshift funnel to close the gap. Who would ever know? Only the poor slobs who bought that new house and nine years later learned that their milk-funneled shower drain was now well beyond its expiration date of…take a look for yourself at the photo…May 16, 2012.

Meanwhile, in other expiration-date news (this is what we newswriters call a slick transition), I promised a bit more detail about my newly predicted expiration date. Here are some facts and expectations.

Fact: The statistically accepted five-year survival rate for American men diagnosed with stage four metastatic prostate cancer is 30 percent. So, about one in three such patients make it beyond the five-year anniversary of that diagnosis.

That’s a raw number, in more ways than one.

Yes, it is sobering, but the calculation covers the entire affected population, including men even older than I am when they graduate to stage four (I’ll be 74 in July), men who were not promptly diagnosed and were found to have cancer that spread even deeper than mine (extensive lymph-node involvement and likely in the bloodstream), men who already were ill with other serious ailments (thankfully, we’re pretty sure that’s not me) and/or who died during that period from one of those other ailments, men who got hit by one of the metaphorical trucks mentioned by our oncology specialist, and so on.

OK, so the odds are fairly good that I could be among those lucky (?) one in three who get past year five, from the mega-statistical standpoint. Not great, but also not terrible.

End-stage cancer, but…thankfully. not at or within sight of the end of the end stage, if that makes any sense. Many truly fine people, including some associated with our synagogue, already have offered to set up meal-delivery rotations for us and things like that. We’re deeply appreciative, but we’re not there yet. (When that time comes, which is not now, I really like bagels, potato blintzes, bagels, Italian food, and pretty much anything with cheese, including bagels. Just saying.)

Where was I? Oh…expiration dates. Drilling down, we asked our lead specialist for an estimate of my personal use-by date. (A lot of people wouldn’t ask that question, and that’s fine, but the Merzer-Flemings are not built that way. Give us the facts, good, bad or ugly, and we’ll deal with them.)

Basically, I think in terms of Bagel Years. How many more years will I have to enjoy bagels? (And, of course, everything else and everyone else.)

The answer: Five to seven Bagel Years, perhaps augmented by new therapies that might come along.

Now, to be clear-eyed, that’s five to seven years of continuous treatment with an ever-escalating series of chemical therapies, all of which carry side effects. (More about side effects coming soon.) And there are no guarantees, obviously. The sudden onset of this crisis suggests that my merry molecular pranksters may not be playing by commonly accepted prostate-cancer rules.

But still, that ain’t bad for a guy my age. That gets me to a place where the grandkids are within range of adulthood, and it may leave Marion enough time to finally learn how to reset the modem. (I am SO going to get “The Look.”)

I told the doc: “My father and most of my male relatives died at or around 60. I’m almost 74. You get me five to seven years of decent-quality life, I’m a happy guy.” (That’s a lot of bagels, which, by the way, Mr. Rabbi Jack Romberg, as a reminder, should never be toasted unless they are not fresh. This is non-negotiable. If it is not in the Torah, it should be.)

Importantly and more seriously, this would be a much different story for a man in his 40s, 50s, even 60s. And it very often is. Five to seven years or fewer? With side effects that could be even more debilitating or discouraging or depressing for men of that age? Who still might have children in the household?

We’re on several prostate-cancer message boards. We read the accounts. We track the cases. We mourn the losses, especially the early losses.

Sorry to be a pest, but don’t be one of those men or one of those families. Glance again at the bottom of this blog: Men – make sure to keep track of your PSA through a blood test at least once a year. Women – don’t let them get away without doing this.

—

In a related development (another slick newswriter’s transition), the results of the bone-density scan came back – and they were disappointing. Something or another, maybe the cancer, maybe just advancing age, maybe both, has weakened the bones.

So…yep. Another injection of another drug, this time Prolia.

If you’re keeping score at home, the starting lineup now includes Firmagon, Prolia and Erleada, with Eligard called back up to the majors and soon to be batting cleanup.

This is not an ideal situation. One hears anecdotally of advanced cancer patients and the number and varieties of the therapies that keep them going and the attendant side effects and…well…I guess we’re just about there already. For starters, the belly inflammation and discomfort at last Monday’s Firmagon injection sites have outlived the welcome they never really had.

That third drug, Erleada, is the diamond-priced, bonus-baby rookie that our medical practice managed to get approved by the insurance company and funded by a foundation. The first doses should be available this coming week. I think it’s four large pills per day, every day.

A speciality pharmacy sends sequential 30-day supplies of that stuff straight to the house. I guess those folks don’t see a whole lot of upside in providing large volumes of those little jewels too far in advance, given, well, you know.

Oh, sorry. Did you ask about the sticker price of Erleada? Are you sure you want to know? I mean, really…really…sure?

Here we go:

$13,407.

For a 30-day supply.

Each 30-day supply.

If we understand what’s happening, and I’m not entirely sure that we do, we’re going to get it for free, thanks to our insurance plan and that foundation.

But as my friend/bro Larry Pintacuda says about that sticker price: “That’s just not right.”

The PSA blood test, a key prostate-cancer screening tool for all men, has become somewhat controversial. It should not be.

It twice saved my life. If you are a man, it has the potential to save your life. If you are a woman, it has the potential to save your man’s life.

Widely known by its initials, Prostate Specific Antigen screening is a simple blood test that is covered by virtually every U.S. health insurance program. It monitors the level of a protein produced by the prostate – and by prostate cancer cells. High or rising levels of PSA can be a leading indicator of prostate cancer.

Every man over 50 years old (and, personally, I would say over 40 years old) should insist that it is done at least once a year as part of the battery of blood tests that precede an annual checkup. If nothing else, this will establish a baseline if future problems arise.

A reading higher than 4.0 generally attracts some attention, but that is not a firm guideline and it should be adjusted for age, the rate of acceleration and other factors. More details from actual scientists (a group that does not include me) – normal ranges and so on – can be found at this link: https://www.pcf.org/about-prostate-cancer/what-is-prostate-cancer/the-psa-test/

Now, regarding the controversy: In recent years, some statistical studies have questioned the value of wholesale PSA screening, with some “experts” recommending against such screening absent a finding by a physician who digitally exams the man’s prostate for a suspicious bump.

The assertion is that many findings of elevated PSA lead to biopsies that prove negative and thus are unnecessary. (Biopsies can produce their own rare complications – more about this at another time.)

My view: This is nuts. It’s a prime example of ivy-tower cogitation by people who crunch data and draw conclusions solely from that data rather than factoring in actual life experience and clinical experience.

There is no obligation, ever, to agree to a biopsy just because you had a blood test. But wouldn’t you want to know that you at least should consider a biopsy or another form of follow-up because maybe there’s a problem?

A suspicious PSA test is the biological equivalent of a vehicle’s yellow “Check Engine” light. It doesn’t require you to poke around any parts, but it sure as hell suggests that you ought to consider looking into what may be going wrong.

In my case, slowly rising PSA results over several years (ultimately reaching 13.1), led in 2018 to an MRI-guided biopsy (again, more on this later) that originally found the cancer, triggering treatment with hormone-reduction drugs and 43 sessions of focused radiation. I did not have any suspicious bumps on my prostate. It was solely the PSA screening and subsequent treatment that saved my life at that point.

We thought we had it corralled, but prostate cancer is notably tenacious and it came back. How did we know? Because, as I mentioned yesterday, my PSA went from undetectable to 6.5 last month and then to 11.6 this month.

Without those PSA tests, we would not have known any of this. Without that last sequence of PSA tests, the cancer would have spread even more than it did and, according to the doctors, it would have claimed me by this time next year.

Prostate-cancer message boards are filled with posts from men – or their survivors – who did not monitor their PSA. The first symptoms of their prostate cancer: severe bone pain, unexplained spontaneous fractures, or other serious problems. At that point, they were found to have PSA readings in the hundreds or even thousands. And they were in very serious trouble.

At the bottom of this blog, you will find this message: Men: Make sure your physician orders a PSA blood test at least once every year. Women: Make sure that your men do this.

Yes. Please.

“The woods are lovely, dark and deep.
“But I have promises to keep,
“And miles to go before I sleep,
“And miles to go before I sleep.” – Robert Frost

• 

• 

(This initial post will be much longer than those that follow.)

So, here’s the deal: The prostate cancer is back, big-time.

First appearing in 2018, it had been under control since the beginning of 2020, producing virtually no PSA (much more about PSA blood tests in coming posts). But the PSA signal exploded about a month ago – a nine-fold increase to 6.5 from the previous 0.7, over just four months. That caught everyone’s attention.

We learned Monday, just before seeing the advanced prostate cancer specialist, that the PSA result nearly doubled again in the past month, from 6.5 to 11.6. “Houston, we have….” you know the rest of that. Said my wife Marion: “Damn. They’re just going to dump you in a vat of chemo.” She wasn’t far off.

After a few weeks of examinations, conferences and a nifty full-body nuclear scan (that I lit up pretty good and that, atop lots of earlier radiation, ensures that I’ll never again need a nightlight), the verdict arrived:

My particular flavor of prostate cancer somehow became much more aggressive and spread throughout my lymphatic system. “Extensive lymph node involvement,” was the lede of the story. There is no confirmed bone, brain or organ involvement, other than in the pesky prostate itself, but there is a scientific near-certainty that prostate-cancer explorers are canoeing in my bloodstream, looking to establish colonies on distant lands.

Because of the spread, the case is now categorized as Stage Four Metastatic Prostate Cancer.

That’s a scary term, but it does not carry an immediate or even near-term death sentence. Surgery is out. Radiation is out. But “systemic treatments” are various and offer the possibility of slowing the spread and maybe even repairing some of the damage.

Lengthy meetings here in Tallahassee, Florida, with our urologist (Dr. Robert Bradford, who has been right-on-the-ball), our radiation oncologist (Dr. Philip Sharp, who got us to a form of remission two years ago and is just a terrific guy), and our new advanced prostate cancer oncology specialist, Dr. Scott Sellinger, one of the most experienced in the country, have produced a multi-faceted, promising regimen of treatment.

With no time to waste, we began a new phase of “androgen (hormone) deprivation therapy” two days ago, before we even left that introductory meeting with Dr. Sellinger. ADT works to rob the cancer cells of the testosterone on which they feed. I was injected (twice) in the belly with a much more powerful agent – Firmagon – than I had before (called Eligard). I’ll need a booster injection of Firmagon in each of the next three or four months, and then I may be able to return to Eligard, which is no stroll in the park, either.

Upon approval from the insurance company and a financial reimbursement review from the pharmaceutical company, the Firmagon soon will be augmented with a recently approved agent – either Erleada or the similar Xtandi, both of which carry astronomical list prices.

Working in concert, these two agents – Firmagon and Erleada/Xtandi – should for awhile slow the cancer, which will be tracked through frequent PSA blood tests. These drugs are accompanied by very real side effects, but we’ve been through some of that before and we’re braced for whatever comes. I feel fine at the moment, aside from significant swelling and discomfort at the injection sites, but the other side effects will hit soon.

The docs also scheduled a bone-density scan to get a baseline (these therapies can weaken bones) and a genetic blood test to determine if a genetic mutation is involved in my case – an important factor in determining future treatments and something that daughter Allie and grandchildren Sol and Sophie need to know regarding their own genetic makeup.

Allie and Marion and our closest friends have been great – shaken, of course, but confident that we can deal with this. Grandson Sol, nearly 13, who happened to be in the car when the oncologist first called with the news, knows the basics; granddaughter Sophie and honorary grandson Matty Petley, both 8, are not being told much. We ask that anyone who knows them keeps this in mind when interacting with them.

As far as the future, the docs are being quite clear. This is not a cure situation. It is a monitor, treatment, monitor, change treatment, monitor, etc., situation. Basically, we will climb a scaffold of “systemic” therapies, leaving some behind as they stop working, deploying more powerful agents as necessary.

To quote Dr. Sellinger, “unless a truck hits you first,” this eventually will get me. Being a nosy reporter, I asked him for a definition of “eventually.” The answer: A significant number of years, particularly as new therapies come on line. I’ll be more specific in a future post, but at the age of nearly 74, that’s not a bad deal at all.

So, those are the basic facts, and it feels pretty weird to share this. In 35 years of writing, I’ve used the first person maybe half a dozen times, and only when ordered to do so. It does not come naturally to me. I find it self-absorbed.

This, obviously, is a bit of a different case.

I plan to blog from time to time along the way, generally in much smaller segments than this initial scene setter, employing first person only when necessary. If you’d like to be notified of future blog posts, please find the “Subscribe” button along the right-hand side of the page and enter your email address. I’d like to keep all of this as separate as possible from my Facebook feed, so feel free to leave a reply here (by clicking the comment bubble) rather than there.

I think – I hope – that this blog will help others who face, or one day may face, similar challenges.

Also, I’m a newsman – and this is a helluva story, and I have an exclusive. 🙂