Thursday, July 20, 2017

Medical: MCL Stage 1 vs 3 Phase Treatment

Lots of progress today:

1) My Mantle Cell Lymphoma (MCL) appears "the usual"-- tests from here probe exceptions we don't expect to find (AIDS, Hepatitis, or immune, metabolic, or genetic complications). MCL is deceptive: goes away easily, but also came back easily.

2) I'm Stage 1 (no evidence of spread beyond neck area). A CAT scan showed all clear from clavicle to groin; this is good good, but unfortunately does not make treatment any less severe, since they assume that lymphomas spread in the blood (and they will still stab my hip bone to look for it in the marrow to disprove it there)

3) Chemo is like Scrooge's ghost visits: 3 different, ramping from pleasant to scary.
  1. "RB" 2 half-day outpatient IVs 4 weeks apart;  very mild; likely to shrink my neck lump to be cosmetically-invisible in 2 weeks.
  2. "RC" 2 half-day outpatient IVs 4 weeks apart;  recent innovation with high success rates
  3.  ASCT Stem Cell Transplant (bank my stem cells, wipe out immune system (& hair), regrow immune system from banked cells)
    Requires 3-week hospitalization, total 3 months feeling sick
The problem is that while my tests look great, and RB-RC one-two is known to work great at eliminating MCL, and the higher the elimination, the longer before recurrence, RB-RC is so new (<2 yrs) that they don't really know if it is actually sufficient to keep MCL from coming back in 3 to 5 years (which RB alone was not) and only the misery of ASCT is known to keep it away 10+ years

Schedule Notes;
- Chemo starts next Wednesday (unless tests come back very abnormal)
- Will begin a process of "second opinion" during Phase 1, whose goal is to have "second opinion" style options when we're deciding on Phase 3

FAQ: What is a Mantle Cell?


The mantle cells are B-type immune cells that surround the Germinal Center(s) in a lymph node (called out at lower left in this diagram of a lymph node).  The immune system is divided into at least t-cells, B-cells, and Natural Killer cells. Lymph nodes are special organs where immune cells live and do their work.


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