Tuesday, February 05, 2019

Medical: No Cancer (but not enough Neutrophils either)

First the good news: tests show me about as "cancer free" as tests can.

Also, my Liver Enzymes are back to totally normal

Most people don't have a marrow biopsy (left hip this time) and a PET scan to tell them that the cancer is "very gone" (or very undetected, anyway).  But I did.

The Marrow Tests:

    • Looking at the marrow core, it looked like normal, healthy marrow. It looked like a very red matchstick, with tiny little gnocchi (the marrow cells) clinging to it.
    • FISH Test looks for mutations inside cells.  It found none (when done on my hip-marrow sample)
    • Laser Cytometry looks for mutations on the outside of cells. It found none (when done on my hip marrow sample)

The PET Scan

    • Looks for the "glow" of cancer that's sucked up the radioactive sugar they inject. 
    • I was a 1 (the lowest possible) on the Deauville Scale (where a 1, 2, or 3 are all good)

      1. no uptake or no residual uptake (when used interim) 
      2. slight uptake, but below blood pool (mediastinum) 
      3. uptake above mediastinal, but below or equal to uptake in the liver
      4. uptake slightly to moderately higher than liver
      5. markedly increased uptake or any new lesion (on response evaluation)
The bad news is that the tests were necessary because we're trying to understand why my white blood count (ANC Absolute Neutrophil Count) are low:

  • 1500 to 8000 is normal
  • 1200 would be "normal enough"
  • 800 would be "low but probably enough in most circumstances"
  • 600 to 780 is where I've been bouncing around (In weekly re-tests Jan 10th to Jan 25)
  • 500 is "low enough to worry" and be "officially" neutropenic
  • 200 is where I was last Thursday
There were two guesses: 
  1. the cancer had returned and was crowding out healthy production.  This seemed unlikely because I was not anemic: my red counts and platelets were fully normal
  2. the follow up Rituxan (immuno therapy) was to blame.  Recall that that as part of a 2-year post-treatment to mop up stray mutants, I am scheduled for Rituxan every 2 months and had had it 3 such times.
With cancer essentially ruled out, attention turns to it being a Rituxan side effect and me needing some sort of jump start on my neutrophil production.

They'd tried giving me neupogen (a once-a-day shot...but only once per week) just to see if it would jump start things.  It didn't.

On Thursday, when I was 200, they gave me Neulasta (a long-lasting shot) and scheduled me for a visit on Feb 12th, when they may try something else.

That something else will be an IVIG (Intervenous Immuno Globulin).  They don't know its method of action, but somehow it helps people in my situation.  



Medical: October Was Normal (or not)

In October I did my Rituxan with the proviso that my white count (neutrophils) were on the margin of being low.

Day 1 of Ibrutinib

 I took my first pill of ibrutinib today at 7am.  The pill "wallet" (individual pills in individual "blisters" on a 4-we...