Dear Diary

Dear Diary - I've been ignoring you for the past month - shame on me!  I guess I got saturated with WM information, and needed a break.  I switched from reading everything I could about WM to reading mystery stories (Stieg Larsson highly recommended for escapism).

Anyway, I've been on the RAD001 trial for 2 months now, and want to catalog my experience so far.  I started out taking 10 mg/day.  WM is characterized by a proliferation of a particular white blood cell (a kind of "B" cell) in the bone marrow; these B cells secrete an abundance of an antibody called IgM.  IgM is a normal antibody produced by the body, but when you get too much of it, your blood can get thick and viscous, which can cause all kinds of problems.  Think of the thick, viscous tar balls washing up in Louisiana.  Also, the WM-related IgM is not the same as the normal IgM.  Anyway, the IgM level in my blood is improving.  It started at 3190.  After one month, it was 2990, and it is now 2640.  This is a 17% overall drop, which falls into the official definition of "stable disease".  In other words, if this were the end of the trial, the doctors would say it didn't work.   Normal IgM levels are somewhere in the 45 to 250 range.  "Minor response" is defined as a 25%-50% drop in IgM; "partial response" is a sustained drop of 50% or more; and "complete response" requires that the "bad" IgM disappear altogether, and that the bone marrow shows less than 20% of the "bad" B cells.  (I had 95% bad B cells at diagnosis.)  Still, I'm encouraged, since at least the IgM is going in the right direction, and the rate of change is improving.  Measuring the bad B cells involves taking a sample of the bone marrow, which will be done at the 6-month mark.

On the negative side, my anemia has been fluctuating and actually got to a level requiring a transfusion.  The level of anemia is usually characterized by one or both of two numbers that are measured in a blood test called a "Compete Blood Count", or CBC.  These numbers are the hematocrit (HCT) and the hemoglobin (HGB) level.  For adult males, HCT should be in the range 42% to 54%, and HGB should be in the range 14 to 18.  Shortly after diagnosis, my HCT was measured at 24.5% and HGB was 8.5 at the Dana-Farber Cancer Institute (DFCI), where my trial is running.  HCT/HGB were measured as high as 29.8/8.9 at my local hematologist in June, but were measured at 21.4/7.5 at DFCI this past Monday (7/26) - that's when I got the transfusion.  The study doctor had me skip the drug for two days, then resume at 7.5 mg/day.

I've learned that the CBC numbers can vary pretty dramatically between doctor's offices.  At my local doctor, they put a few drops of blood into a machine about the size of a big laser printer, and it prints out a report after a few minutes.  At DFCI, they do something different that involves sending many vials of blood to their lab.

Other side effects have included mouth sores, which are controllable via an oral rinse containing a steroid called dexamethasone.  I've also had more bloody noses than usual (2-3 times per week, as opposed to maybe twice/year before diagnosis), and frequent muscle cramps in my leg and foot at night, although the DFCI team doesn't seem too concerned.  Bananas and Powerade are controlling the cramps.  I've always had eczema that comes and goes on my hands, and it seems to be more persistent right now than usual.  I doubt it's connected, but who knows.

The last few days I've been noticing some tingling and numbness in my hands and fingers.  This can be a side effect of the drug, and can also be a symptom resulting from the raised IgM levels.  I'll need to discuss this with the trial team.