Monday, January 18, 2016

Scary or Encouraging?

My myeloma is the Immunoglobulin G (IgG) type, so the doctors and I consider that the blood proteins IgG and M-spike (monoclonal protein) are the best markers for my tumor burden.  Last Tuesday IgG jumped 21% from 1390 to 1680 mg/dL, the highest value in years and the largest jump I have ever seen between two measurements.  That jump happened in just one week.

Either the myeloma has suddenly gone crazy, or something else is going on.  This blog is titled Myeloma Hope, so I hope that something else is happening, something good.

My doctor ML warned me in advance that the myeloma markers might not even be measured during the first eight weeks of the current study, because they might go wild (and presumably scare the pants off a simple country boy like me).  However, until now the measurements have nevertheless been done, hence today's blog about them.

Myeloma is a cancer of some (most) of the plasma cells that live in the bone marrow, but not ALL of the plasma cells - there are still some good ones.  Unfortunately there is no way to evaluate the plasma cells (good or bad) without a bone marrow biopsy, and even then you only get the cells at the exact spot of the biopsy - another spot will give a somewhat different result.  However, in my case the good and bad cells both generate Immunoglobulin G, a key constituent of any healthy immune system.  The IgG measurement includes the immunoglobulins generated by BOTH the good and the bad cells, and M-spike represents just the useless immunoglobulins made by the malignant cells.

The study drugs are intended to help my immune system recognize the malignant plasma cells as intruders and take action against them, so it is possible that the increase in IgG is actually an increase in the GOOD immunoglobulins which are designed to attack the malignant cells.  If so, then perhaps the study therapy is starting to work!  This notion is somewhat supported by the fact that M-spike remained constant at 1400 mg/dL (1.4 g/dL) for the week, despite the jump in overall IgG.

I say "somewhat" because I don't quite trust the accuracy of M-spike, in part because a week ago it was actually higher than IgG, an impossible result.  That has happened before - Dr WG says they "round up" the numbers.  In addition, even before rounding up, I don't believe that the numbers have either the accuracy or the precision of the IgG measurement.  Nevertheless a steady M-Spike is better than an increase.  I'll take it.

Oh, I hope that this therapy works!  It is SO easy to take - I feel full of energy every day, and neuropathy from previous therapies (especially the next-previous study) is gradually disappearing.

At the ninth week of the study I will get another PET scan, and then we will know.  If it isn't working I have a plan, but I sure want it to work.  Week seven is coming up.


  1. Hi Don. I've followed your blog for years and I also follow you on FB :) Just checking in to say hello and thanks for your update, and I sure hope this study works, and your IgG is attacking myeloma! Hang in there, we're all battling together and hoping for many many more years! I'm currently on Kyprolis + low dose Dex on infusion days, and my IgA has plummeted thank goodness. This is year 6 for me, so I live "one month at a time". And how many marathons have you completed so far? I've never done one lol. You're amazing! Take care, Julie

  2. Hi Julie,
    Glad to hear from you you. Thanks for your good wishes, and I wish you well on your own journey. I hear that Kyprolis is mighty good stuff - I hope it keeps your IgA down for a very long time.
    Best, Don

  3. Hi Don,
    This sounds all very intriguing. I know you can't mention what you're on, but is it and oral drug or are you on an IV. Remember I mentioned that Pomalyst, which worked so great for you, but did absolutely nothing for me? Well, I am now on Velcade weekly and only after 4 shots, my Kappa light chains went from 1010 L/UL ?( i think) to 45 l/UL... just amazing. that was after the whole of last year while using Pom it just hovered around the 1000 mark.
    I hope the PET scan is clear and the drug is working!!
    Best to you and your family,

  4. Hi Christina,
    Thanks for commenting. You are proving that we all have different myeloma! I have never tried Velcade (yet) or Kyprolis, so there are plenty of possibilities yet. Thank Heaven.

    I can only say that the regimen I'm on includes two different drugs, and one of them is not even named yet, just a number. If the regimen works, though, I will be happy to tell you all about it!
    Best, Don

  5. Hang in there Don. I'm IgG Myeloma as well. Maintaining on Revlimid (3 yrs now)...and wondering. A Stable M Spike is still good news. I think next month will be different, for you.

    1. Thanks Rneb,
      I do so hope that your Rev maintenance keeps you going for a long time.