Eric’s Story

Site created on September 1, 2018

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Newest Update

Journal entry by maria groten

Since my last post more than 15 months ago—“poor correspondent” obviously is an understatement—I’ve continued to take those two so-called small molecule inhibitors, one drug in the morning (ibrutinib) and the other (venetoclax) at night.  They work very precisely (meaning with few adverse side effects) to block the signals that otherwise allow cancerous B-cells to propagate, and now they instead have committed mass cellular suicide (apoptosis).  Yesterday, we learned of my admission into Club MRD-U: “Minimum Residual Disease-Undetectable”  (or “Negative”), meaning that flow cytometry can’t find even one cancerous B-cell in 10,000 in my bone marrow.  

So while the rest of the world suffers from medical tragedy, Maria and I are experiencing guilty joy at the remission of the cancerous B-cells that had been inhabiting my lymph nodes, blood stream, and bone marrow for at least the last two years.  

Doesn’t mean cured—chronic lymphocytic leukemia is not traditionally thought of as curable…yet—but MRD-U does seem to mean a long and indefinite remission.  We have every hope that by the time that the few (undetectable) bad boy B-cells still hanging around are able to reproduce enough to manifest themselves again, there will be other means of eradicating them. 

God bless the innumerable unknown and un-thanked legions of those who made yesterday possible--starting with the scientists of centuries ago who conceptualized the cell and the molecule, to the biochemists who identified the errant signals within CLL B-cells and those who designed molecules stereo-chemically perfect to block their pathways but not others, to the investors in early stage drugs, to the clinical trial patients who endured the false starts and false hopes, to the well-placed angels in our world who opened the doors for us to MD Anderson, where I receive care from a team led by Bill Wierda, who shares his world-class gifts as a leukemia whisperer with modest, twinkling charm.

Those of you who haven't read I, Pencil--the essay by Leonard Read--should do so here:

file:///C:/Users/102331/Downloads/I,%20Pencil%20(PDF%202019).pdf

Then come back and contemplate how much more a miracle is Venetoclax, a/k/a 4-(4-((2-(4-chlorophenyl)-4,4-dimethylcyclohex-1-en-1-yl)methyl)piperazin-1-yl)-N-((3-nitro-4-((tetrahydro-2H-pyran-4-ylmethyl)amino)phenyl)sulfonyl)-2-(1H-pyrrolo(2,3-b)pyridin-5-yloxy)benzamide. That is one very complicated collection of atoms, 111 of them to be precise (C45H50ClN7O7S). Ibrutinib weighs in at a "mere" 57. No one person knows how to make either of them from scratch or all of why they work, but I'm glad proof that they do.

I still have an immune system cancer, though, which puts me at high risk of losing any fight with COVID-19.  Accordingly, we’re doing our best to avoid picking that fight, which means shutting out most of the friends and even family who helped get us here and who make being here worthwhile.    But this too shall pass, and absence makes the heart grow fonder.

Onward,
Eric

P.S from Maria 

Eric will be turning 60 on July 6th and I can't think of a better gift to receive than this wonderful news.  Thank you to everyone who has supported us over the last 22 months.  Your love has carried us and lifted us up continuously.  Please remember that no matter what you're going through, there is always hope!  Keep the faith and remember that every day is a gift.  God bless each of you!

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