Progress Report – and The BRCA Gene Mutation in Men

We saw our radiation oncologist today – and the news is mostly good. The work in progress is…progressing nicely.

For clarity, radiation oncologist Dr. Philip Sharp – my head coach during the 2018 prostate-cancer season – is basically watching from the stadium sky box during this 2021 season. There’s nothing that radiation can do for me at this point. But he is such a comforting, knowledgeable presence that we look forward (?!) to our visits every three or six months.

A more specific update will come in about a month from Dr. Scott Sellinger, our prostate cancer oncology expert, but what Dr. Sharp shared or confirmed today is that:

  • The treatments are working, though at a cost. The tell-tale PSA blood factor is slowly diminishing, down to 2.9 last month from a modern, post-2018-season high of 11.6, when it was doubling monthly, signaling excessively swift metastases. This PSA decline is a strong leading indicator that the cancer cells are weakening or even dying due to the meds that deny them the nutrition of testosterone.
  • Further substantiation of this positive trend: Two lymph nodes that were within easy reach, on either side of my neck, were swollen (probably with cancer cells) and were extremely tender three months ago. Today, Dr. Sharp pressed and pressed and…nothing. I felt nothing and he felt nothing. This, also, is a strong indicator regarding the happily diminished state of the extensive lymph node involvement that was evident three months ago.
  • But…the cost. We’ve already discussed the side effects, which are worsening, especially the fatigue. But now, a new one has been developing: weight loss. One of the meds, Firmagon, is known to ladle on new weight; another, the hyper-expensive Erleada, has been associated with minor weight loss, largely due to appetite issues. That second one appears to be winning.

We’ve noticed for awhile that my appetite has largely disappeared, and when it happens to return, it’s satisfied much more swiftly than in the past. The scales tell the story: At Dr. Sharp’s regular weigh-in, I’ve lost 10 pounds since April 18. On our home scale, I’ve lost 13 pounds since January 1. All of this without trying.

The main culprit almost certainly is that second med, Erleada. But both Firmagon and Erleada also can cause significant loss of muscle mass. I haven’t really noticed that (and my face and neck appear slimmer these days due to apparent fat loss – or something). But we’re going to redouble our exercise regimen around here – more long walks (we’re already doing 2-4 hilly miles three or four times a week), and I’ll try to add some training with weights.

Just my luck. For most of my life, I’ve battled weight gain. Now, I’m losing weight, though for the wrong reason. Still, I’ll take some pleasure from that, but only to a point. We’ll keep an eye on it and not let it get out of control.

So, overall a good report today, and some tailwind heading into next month’s consultation with Dr. Sellinger.

**

Separately, we recently received the results of that sophisticated genetic blood test (list price, including analysis – $5,940, all covered by insurance). Described on my medical and insurance documents, because my situation isn’t already sufficiently mortifying, as “breast cancer blood test,” that’s mostly what it is.

It searches for mutations in the BRCA genes, mutations that are associated with a statistically terrifying increase in a woman’s chance of developing breast cancer. Less widely known is that BRCA mutations also are associated with a man’s chance of developing metastatic prostate cancer, which is what I have, and also of developing a rare form of breast cancer. A good summary can be found at this link: https://www.cancercenter.com/cancer-types/breast-cancer/risk-factors/brca1-and-brca=

Now. the good news: My genetic test came back as negative. I don’t have the mutation. That means that daughter Allie and grandchildren Sol, nearly 13, and Sophie, nearly 9, almost certainly don’t have it, either.

If the test had come back as positive – that I do have the BRCA mutation – that would have allowed the doctors to more carefully tailor my treatments. Think rifle shots instead of shotgun blasts. But I don’t care. I’m glad it came back negative – that’s better for the kids and for all descendants down the line.

9 thoughts on “Progress Report – and The BRCA Gene Mutation in Men

  1. Marty — Quietly celebrating the good news, and sending all the good thoughts for the rest of the stuff you’re sharing. Sounds like lots of reasons to be pleased — and eat that extra dish of ice cream (or extra bagel with a schmeer, or whatever your favorite decadence is!)
    Hugs,
    Lee Ann

    Liked by 1 person

  2. Marty, we’ve never met and have only somewhat recently become Facebook friends. Still though, I appreciate you sharing your journey and I’m humbly following. Thank you for letting us walk with you! Good news is always welcome!

    Michele Baker

    Liked by 1 person

  3. I can fix you up with some homemade oatmeal chocolate chip cookies. Nutritious and guaranteed to put weight on you. Anytime just let me know.

    Liked by 1 person

  4. Love that yo are looking at positives when things are so challenging. Keep fighting, and eating. Maybe order some Katz’s deli to be shipped in 🙂

    Liked by 1 person

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