Friday, September 14, 2007

More Thoughts About Marching

Margaret and Ana, Thank you both for your comments on the previous post. My heros, two kind and clever women in Italy! I do feel better.

The decline of 3% in M-spike is probably well within the margin of repeatability of that test, but at least it suggests that monoclonal proteins did not go UP. I do not know of any reason why the normal IgG should have gone up - I was not dealing with any kind of infection that I know of on blood-draw day - but of course it could be due to a transient subclinical infection of some kind. Perhaps the myeloma is not marching; we shall see in five weeks or beyond.

Meantime I will:
  • Continue with the curcumin,
  • Add low-dose naltrexone,
  • Add resveratrol and perhaps more,
  • Get the bone survey (I had a skull MRI done in April),
  • Look into the new Life Extension Curcumin and perhaps use that for part of my daily dose,
  • Examine the Mayo mSMART concensus protocol more carefully (I believe that this will indicate that I should not treat conventionally until CRAB symptoms appear), and
  • Think long and hard about treatment philosophy when and if conventional treatment really is necessary.
That last item includes the decision whether to treat it with the minimum required to keep it under control, or clobber it (thereby also clobbering my body) in the hope of getting a remission which will allow some months or years treatment-free.

In answer to other very good questions:
  • The doctor said that some calcium is bound in the IgG, so the calcium measurement in the normal Chem-20 panel would naturally rise with the IgG and might not be a separate indicator. In five weeks he will order another test for what I believe he called "free calcium," which will be more definitive.
  • I did not ask about vitamin D but I do take 1000 IU daily, or is it 2000?
  • I have had a thyroid test (T4 and another) which were normal. However, my primary physician thinks I neverhteless have the beginning of a goiter (!), so that is a concern and I have started taking a thyroid supplement which includes bovine tissue.
  • I will ask my doctor about another cranial or spinal MRI.
  • My onc just didn't order the B2M test, for some reason. Since it was also trending up I think he should have, and he said that will be included in five weeks, along with the extra calcium test.
  • I've had three BMB's so far, with the most-recent showing only 6.8% plasma cells. However, all three biopsies are from the same hip; next time I will switch hips!
  • I'll check into PET as well.
Thank you both for your thoughtful comments. I encourage you to keep on saving my life :-)


  1. Thanks Don! Great decisions you made. I would add the vitamin D3 test. You know, just to see which level it is.

    My last comment concerns your doubt: either to treat MM the minimun or kill it with the atomic bomb. I'm afraid this is a false dylemma. We have to wait for CRAB (making everything to avoid it , of course) and then go with the atomic bomb. But we will not have to deal with CRAB, let's be optimistic and live fully day by day.

    Take care,

  2. Don, thank you for your very kind comments! Quelle exaggeration ;-), but much appreciated!
    About the vitamin D test, make sure it tests the active form, dihydroxycholecalciferol, or 25(OH)D for short, I think. I had mine tested in June and it was very very low.
    I don't think MM can be killed with the atomic bomb, and indeed at this stage it might well worsen matters. Proceed with caution is my motto. Of course, that is not always possible (at more advanced stages or with more aggressive forms). However, let's never forget that Michael Gearin-Tosh's MM specialists gave him only a few months to live without chemo, and he lived for 11 years or so (without chemo). He is one example, but his story has always inspired me. As I have said in a blog post, our doctors know a lot but they don't know everything.
    I agree with Ana, live fully day by day and make very day a masterpiece! ;-)
    Margaret in Italy

  3. Hi Bob,
    Thanks for directing me to the comment section of your blog.

    I am a 55 year old caucasian female. I'm a southern girl, having lived in South Carolina all of my life. After attempting to donate platelets to a sick friend in July 2006, the lab discovered that something was out of the ordinary. After blood tests and a BMB (left hip,6%), I was diagnosed with MGUS. I was referred to the University of Arkansas Medical Center for further testing. After undergoing a plethora of tests from head-to-toe, and another BMB (right hip, 22%) my condition was upgraded to SMM (IgG Lambda) in October 2006. I was advised not to pursue ANY treatment until further symptoms occur. I feel great and have no symptoms! All of the skeletal surveys, MRI, PET scan, all other blood work was normal. I was told that treatment of SMM would be of no value. Apparently, your doctors feel differently.

    It seems in all the websites I've read, including yours, everyone's IgG numbers are high...mine are low. As of August 2007 my IgG was 637, IgA was 23 and IgM was 12. All my Ig numbers have slowly dropped since last year. You may not be able to answer this but why are my numbers low and others high? I believe we have the same type of SMM!

    I apologize for being so personal but do you have Bence Jones protein in your urine? Mine does. I'm not sure what is normal. I'm still learning.

    Oh yes, one thing I wanted to share with you! In April 2007 a notation was made on my test results...No monoclonal protein detected! My numbers were still low but I thought that was promising! My doctor didn't seem very excited though. No further notations of this kind have been listed. I've been taking Turmeric, recommended by my doctor, since my diagnosis. I've only recently begun the Curcumin protocol. I'm anxious to see if there will be any improvements in my October blood work.

    I've enjoyed "talking" with you! I wish for you continued improvements in your blood work. Sincerely, Donna Steadman

  4. So much for anonymous! : ) Told ya I was new at this! No problem! Have a wonderful day! Donna

  5. Hi Donna,

    I responded in some detail in a new post here.