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Fantastic Health Update

Published on 69 Comments on Fantastic Health Update

UPDATE: This turns out to be a lab screwup. Ignore it. Actual results here.

Today brings some very good news indeed—I think:

According to my latest lab tests, I no longer have any detectable level of M-protein. This is unexpected, since in June it seemed as if my CAR-T response had plateaued. But no. I'm just a slowpoke. Instead of the usual six weeks to a complete cure, it took me five months.

But I'm not quite ready to celebrate yet. When the test results came back, there was no report of M-protein at all. After some annoying back-and-forth with my doctor's office, I finally got a note saying that the lab doesn't return a result if no M-protein is detected. I'm just a little bit dubious of this, so I'm going to wait for next month's results before I feel absolutely sure that the cancer is gone.

That said: I'm apparently cancer free! No more multiple myeloma. I've had a "complete" response to the CAR-T, and further tests down the road related to something called kappa and lambda light free chains will tell me if I've had a "stringent complete" response—the best possible.

This is not likely to be a permanent remission, since "undetectable" doesn't actually mean zero, but it should keep me free of multiple myeloma for at least two or three years without chemotherapy. Hooray!

69 thoughts on “Fantastic Health Update”

  1. bebopman

    Wonderful and marvelous. … You may recall that I prescribed for you weeks ago having more cat interactions. Obviously you have took my advice and should continue the feline tonic until Drs. Hilbert and Charlie determine that you should stop. It’s for your own good.

  4. DarkBrandon

    Yippee!

    Quote from February, 2016, "The odds are slim that I’ll ever collect a Social Security check."

    Would love to see you collect a stack of them.

    I would also love to see more multiple myeloma breakthroughs. It seems to be in a zone where the next therapy is discovered while the previous ones are still working their magic.

  12. cld

    This is because your innards are careful and organized and making sure they get it right and also possibly has something to do with particals that move backward in time to make sure they're on the right track, so you're being yanked forward by future innards to a healthy recovery.

  23. JustUsMonkies

    > This is not likely to be a permanent remission, since "undedectable" doesn't actually mean zero

    {puts on bioanalysis hat}

    There are two low levels for a test - Below Lower Limit of Quantitation (LLoQ) and below Lower Limit of Detection (LLoD).

    You had below **detection** levels, which is effectively zero. You can't prove the absence of a material, only prove that it's not present in detectable amounts.

    Previously you were within the test's quantitation range. Dropping out of that would be excellent news. Dropping out of DETECTION range is literally the best news you can have.

    Rejoice, you're a complete responder.

    1. JustUsMonkies

      The other interesting bit about CAR-T is that it lives in perpetuity in the patient.

      Due to the way your immune system functions, T-Cells that are highly effective become "immortal cell lines" and never go away.

      The first pediatric CAR-T patient, Emily Whitehead, famously still has CAR-T at detectable levels in her body 10 years post treatment.

      In other words, the CAR-T will be battling any recurring myeloma cells forevermore.

        1. JustUsMonkies

          The CAR recognizes BCMA

          If myeloma mutated sufficiently to avoid CAR binding, it also mutates sufficiently to be unable to be costimulated - critical for cell line replication.

          In other words, it's catch 22. If myeloma mutates and BCMA is not present and CAR-T doesn't work, the cell can't reproduce.

  24. mary.contrary

    This is really good news... however:

    There's no such word as "undedectable," is there? Doesn't Kevin mean "undetectable?" Or is this some specific medical terminology I'm unaware of?

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