Sunday, November 16, 2008

Naughty Don

Edited and errors corrected Nov 18.

Perhaps the new CC-4047 drug has done the best it can. After nine four-week cycles in the phase-II trial, overall results are good but numbers are no longer improving. M-spike actually went up slightly this month for the first time, from 0.9 to 0.97, though still well down from the high of 2.7 at the start of the trial. This is also the first time that I have seen M-spike reported to the hundredths digit, though, so I wonder how significant that last digit really is, knowing that the electrophoresis test which measures M-spike isn't especially accurate anyway. IgG is virtually unchanged, and Lambda free-light chains (FLC) are up a little but so are Kappa light chains, and the ratio is unchanged.

White cell and red cell counts are mostly unchanged, also good. Hemoglobin is actually up a little. I bought a $25 blood pressure monitor and measured my blood pressure many times over the past few weeks, to get a better picture, and found that it is normal most of the time on the 12-mg dose of dexamethasone. Here is a chart of the blood pressure readings.

Because of muscle weakening, the doctor reduced my dex dosage from 12 mg per week to 8 mg per week for the upcoming 10th cycle. The entire protocol as prescribed by Dr. L is detailed in a previous post.

I skipped my supplements during this cycle, hence the "naughty Don" title. I didn't mean to at first, just forgot to take them, but when a week and a half had passed and I hadn't taken any yet, I decided to forget them for the rest of the cycle as an experiment. Result? This was the first cycle in which M-spike went up, if just a little. Maybe the supplements would have made a difference, maybe not, but I'm back on them now and we will see.

On this Mayo visit I met with Dr DS rather than Dr L, though Dr L did pop in for a moment. Dr DS is a certified nurse practitioner with special training in myeloma. She did a good job. I can't complain about my treatment at Mayo.

Here are some related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wide browser window. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post.

Other subjects that came up:
  • The half-life of lambda and kappa light chains is just a few hours, and there is a constant race between the production of the light chains by plasma cells and their clearance by the kidneys. Several factors can influence the clearance, which is why the reported measurement of light chains may vary even if production is constant. Clearance is the same for both kappa and lambda, however, so the kappa/lambda ratio helps clarify whether an increase is real or not.
  • Mayo uses a test called the Plasma Cell Labeling Index to determine the rate at which a person's myeloma is increasing. It involves a careful examination of the nuclei of many plasma cells. This test does correlate with actual patient experience, so it must mean (1) plasma cells really do clone themselves, or (2) the "memory B cells" which some think are responsible for creating new myeloma cells must be included in the blood sample being measured. Dr L thinks both are true, if I understood her response. Myeloma cells can clone themselves, at least to some extent, and the memory B cells can create them as well.
  • We didn't discuss this, but here is what I think are the three names for the trial drug that I am on:
    • CC-4047: Code name used in drug trials;
    • Actimid: Brand name, like Revlimid is a brand name for lenalidomide;
    • Pomalidomide: Generic drug name, like lenalidomide is the generic name for Revlimid.
Here are a few specific test results:

Test Aug 22    Sep 16    Oct 13    Nov 11    Remarks
M-spike g/dL 1.0 1.0 0.9 1.0 Best tumor measure
IgG mg/dL 1040 1180 1130 1170 Variation is normal
L FLC mg/dL 3.57 2.64 3.14 3.25 Free light chains
Calcium mg/dL 9.3 9.7 9.6 9.8 Below 10.2 is best
Creat mg/dL 1.3 1.0 1.1 0.9 Kidney, lower is better
HGB g/dL 13.8 13.6 13.8 14.6 Hemoglobin, slightly low
RBC M/uL 3.99 3.90 3.97 4.19 Red cell count, low
WBC K/uL 4.4 5.3 4.4 4.3 White cells, normal

I'm still running - three marathons since September. Nineteen states now, only 33 to go :-) Life is good.

Click to enlarge, BACK to return here


  1. Hi Don;

    I'd say your numbers are outstanding. The SPEP's stability seems the key number. If Actimid or Revlimid can keep it at that number and you stay on the supplements and run marathons, wow, life is good.

    Thanks for the blog and your thorough research.


  2. Hi Don,

    I agree with John, your numbers are great. Good job! :-)

    About the cloning I understand it, there are two main theories floating around, and these are similar to what you mention in your post:

    1. only a tiny, functionally unique, subset of myeloma cells is able to clone itself (=stem cell theory, Drs. Huff and Matsui).

    2. ALL myeloma cells can clone themselves (yikes!), but only a few express this property at any point in time (phew!).

    It makes sense that only a small percentage of our myeloma cells (or B memory cells, depending on the theory you ascribe to) possesses the cloning ability. If the reverse were true, that is, if ALL of our myeloma cells were able to create clones of themselves every single nanosecond, we'd be goners in no time.

    I found it very interesting that Dr. Lacy believes that both theories are correct. I would love to know why...

    Thanks for your post. As always, it helped me come up with another question ot two for my hematologist (I am seeing her in a couple of weeks).

    Florence, Italy

  3. Your treatments must be going well as even many healthy people could not run 3 marathons since September. I'll bet the 33 you have left will go fast. Enjoy them.

  4. Don, what supplements have you been taking?

  5. Karen,

    Here's the list. I will be adding back some of the crossed-out ones, especially Co-Q10.


  6. WOW. Sounds like things are pretty good at this stage. Hurry for you.

    Lots to be thankful for next week on Thursday.

  7. Hi Don-
    No worries about the xtra .07 rise in M-spike. My oncologist diagramed and mapped out how the pathologist interpret the test. Lots of room for error. He strongly believes that any variation less than .5 is statistically irrelevant. I am amazed by the informed, technical feedback you receive on your blog. Wow! A more interesting read than most books on myeloma. Thanks for sharing! Pat

  8. Sounds likle you are doing well enough. Keep up the careful work!