Sunday, March 9, 2008

Mayo Wrapup

Four trips to Mayo, 680 miles, and oh so worth it.

Today's dex headline:

I had a little trouble sleeping last night, awakened early and laid there with my brain buzzing most of the time. Otherwise the Sunday morning after Friday night's dexamethasone (dex) is uneventful. I feel fine, and not so hopped-up as yesterday.

Analysis of test results:

Here is a little table of some of the important results, with the "bad" ones first, then the "good":

Test & units Dec 26  Mar 7   Comments
M-Spike g/dL 2.05 2.70   I don't quite believe it, see below
BMB Plasma cells % 6.7 5-10   Another result showed 22% - ??
Calcium mg/dL 10.0 10.2   Above Mayo normal range of 10.1
FreeLite mg/dL 4.67 5.88   Gives credence to the M-Spike
PET Scan   Pos   Showed up VERY clearly
Bone Survey Neg Pos   Vague area of lucency in scapula
All CBC values Lo RBC OK   No anemia or any "penia"
IgG mg/dL 3000 2960   Unchanged
Creatinine mg/dL 1.0 0.9   Lowest ever, test difference?
Albumin g/dL 4.2 4.5   Best in 18 months
Beta-2 M mg/L   1.89   Lower than a year ago

Long-term historic values from many tests are displayed graphically and numerically on separate pages, see "related Links" below.
PET Scan Report.  Click to enlarge, 'back' to return
My interpretation:
  • The M-Spike reading may be high because of laboratory differences. In any case this test, while important, is not altogether reliable.
  • The normal CBC, albumin, creatinine, and stable B2M values indicate that my soft tissue organs are not being harmed yet.
  • The high calcium, the bone scan, and especially the PET scan clearly indicate damage to bones. Dr Lacy toggled through the entire computerized PET scan from my head to my knees and those active areas showed up very graphically.
  • Damage is thus far limited to both scapulae (shoulder blades) and the T10 "spinous process," which I believe is NOT the load-bearing part of the vertebra.
  • I do not feel pain in any of those places, but I sure am curious if that's the same vertebra that DID hurt five years ago and which led to the myeloma diagnosis. I will try to find out.
  • Click on the little graphic to see the written PET scan report. Click "return" to get back.
Related links: Back to Mayo in one month. Meanwhile: CC-4047, Dex, Zantax, aspirin, acyclovir, and selected supplements.


  1. Hi Don. Thank you very much for posting all this. You made me think. We spend most of the time reasoning about our blood tests. We know that BMB is quite unreliable and in the end we don't have BMB as often as blood tests. Now what I think is that blood tests are ... useless. If you had posted your test results (without the PET) I would have judged them very good. Furthermore you feel good, have no pain, are a fit person. No way to know about the active MM.
    Rationally, I think I should stop having blood tests every two months and just have a PET Scan and blood tests once a year. The Italian health system would save money and I would probably gain some mental health. I don't know. At this point I confess I'm .... lost.

  2. Hi Sherlock,

    Love hearing from you. I feel your sense of exasperation!

    Observation: If creatinine took a sudden jump, or albumin a drop, or anemia popped up, we would want to know that. And calcium could point to the need for a PET scan. But those are just the normal CBC/Chem values, no IgG or M-spike. You may be right about the fancy protein tests.

    Question: Do you have a result from your PET scan yet? I'd love to hear that it was negative!


  3. Don,

    I visit your blog daily and I admire your approach to dealing with your condition. Since you have not had previous PET scans, there is no certainty that these indications have any great significance of advancing disease. You may still be smoldering.

    Your comments about differences between laboratories is right on. Doctors do not understand statistics and laboratory data quality very well, if at all. Without any indication of the repeatability within the laboratory and reproducibity between the laboratories, one can only guess whether an m-spike of 2.0 or 2.7 is really different or not. Labs should publish these statistics, so that physicians could make informed decisions about their patients. Your free-lite tests are the best indication that you have myeloma and not a very aggressive sort. Your exercise and diet may be contributing to this passivity.

    I am sure you will continue to have regular tests to monitor the effectiveness of the trial that you are on. You are smart to look at treatment before you are symptomatic. If you were anemic or if your kidney function were impaired, these drugs would be much harder on you. Also keep up on your exercise and diet (I know you will). These are the best things you can do.

    Keep posting and may God Bless You,

    Chuck Zubritsky

  4. Hi Don,
    yes, I'm quite tired about tests...
    I'll have my PET results only on the 1st of April, when I see my doctor in Bologna. I'll let you know... if I can survive until the first of April ;-)

  5. Don, this sounds like good news, even if only in a modest sense. To not show any worse damage to bones or organs means you seem to be holding your own. Keep going.

  6. Hi Don,
    I am an MM survivor since my diagnosis in 11/05. Your blogs are more educational than anything I have read. I am (was) a Stage II diagnosis with 4 hot spots in the skeleton and a 3.5 on the M Spike. I am 52 years old. I just wanted to tell you how much I appreciate your work AND your resolve. I find it very inspiring and valuable. May God continue to bless you with that great attitude, wife and daughter. Now, I think I'll go snack on some organic fruit and take my curcumin pills.