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Wednesday, January 4, 2012

Cycle 5 Results

Usually I'm all atwitter when my monthly protein test results come in.  I get most of my blood test results online through the DFCI Patient Gateway, but the most important monthly pathology reports, the serum protein electrophoresis and immunofixation interpretations, aren't available online.  Usually I call Kathy Colson at the beginning of the week after the test and have her read the results to me over the phone.  This time I didn't bother with that for a couple of reasons.  First, she's busy and I hate to keep bugging her, and second, I've already reached near Complete Response (nCR), and I've supposedly maxed out on the MLN9708 therapy after 4 cycles, as I mentioned in my last post.

Today I went in for my weekly blood draw and infusion treatment.  Heather was out today, so I had a new nurse, Jennifer.  I asked her to print out the Cycle 5 pathology report for me.  When Jennifer handed me the printout, I quickly scanned to the bottom of the page where the clinical interpretation is given.  Under Immunofixation, three words jumped out at me:  "No monoclonal gammopathy"!  I was stunned.  The test now shows no evidence of the myeloma in my blood.  Against all odds, I have continued to show improvement this last month, and I might possibly have achieved a state of Complete Response (CR)!  I have to admit I got a bit emotional at that point.  I had very low expectations for these results, and I was happy enough to have achieved nCR from my treatment so far.  This was totally unexpected.  I'm sorry Heather wasn't there today to share in my good news.  I don't know if there is a cloud 10, but I happily climbed onto cloud 9.

I have to add a note of caution here.  The internationally accepted criteria for achieving CR consists of all of the following:
  • Negative blood serum immunofixation
  • Negative 24-hour urine immunofixation
  • Less than 5% plasma cells in bone marrow
As of my latest results, I now satisfy the first criterion.  In November (Cycle 4), my urine test results showed "small monoclonal kappa in gamma fraction".  The new Cycle 5 urine immunofixation result is "cannot rule out small monoclonal protein".  I'm happy to note that this result also shows a definite improvement (yippee!), but it's not yet definitive.  As for the bone marrow plasma, I need a bone marrow biopsy to measure that, which I won't be getting for a couple of months (it's no fun, so I can wait).  As a reference, my last bone marrow biopsy in August showed greater than 60% plasma cells in my marrow.  The important thing here is that I am continuing to respond well to my MLN9708 therapy, and if I am not yet in CR, I am certainly moving closer to getting there.  It's all good.

Now this is usually the point where I pull out the spreadsheet and show how all my numbers have evolved since I started therapy.  I'm not going to do that this time, since I know it makes your eyes glaze over.  It even makes my eyes glaze over, so I'll forgo that for all of our sakes.  There's no need to gild the lily here.

I don't know what all this means regarding my decision whether or not to undergo an Autologous Stem Cell Transplant (ASCT).  On the one hand, my continued improvement with the clinical trial protocol might mean an extended Progression Free Survival (PFS) by continuing with the protocol and deferring the ASCT.  However, an improved response to initial induction therapy also bodes well for an extended PFS after a transplant.  In other words, achieving CS gives better prospects for both options, but it doesn't necessarily favor one option over the other.  I will still continue to gather data and ask questions over the next couple of months, but as of now, I don't see any reason to change my opinion on how to proceed from here.

Pat Killingsworth just published his second book, Stem Cell Transplants, which he wrote from a patient's perspective.  I just ordered an advanced copy from him, which I hope will give some insights on what to expect with my potential ASCT.  I already have a detailed manual from DFCI giving the clinical perspective on the transplant process, which Gretchen and I will both read soon, but it will be nice to have the patient's side of this to mull over as well.

I have to say, the New Year has gotten off to a good start!


  1. Congrats, Bill! Keep up the "good work"!
    Sue Roberts

  2. Bill!!!!!!!!
    Yippee! is an understatement! I am more inclined to use the word:
    Supercalifragilisticexpialidocious! 2012 is going to be a good year for you!
    New York marilyn

  3. Great news Bill and what a way to ring in the new year!!! I have to believe your positive attitude has a lot to do with these results.

    - Ryan

  4. You're right, Marilyn. Yippee is a little banal.

  5. I'm sure a positive attitude helps, Ryan. Of course it's easier to stay positive when one feels good and the treatment is working. I hope I can still stay positive if and when things take a turn for the worse.

  6. CONGRATS BILL!!!!!!!!

    We are so happy to hear the great news. What will you and Gretchen do to celebrate?

    Nick & Michelle

  7. Thanks, Nick. On New Year's Eve, I opened a bottle of champagne by myself, since Gretchen went to bed early. I had an extra bottle, so yesterday was a good occasion to pop that one open for Gretchen and me to celebrate. Don't tell Dr. Richardson that I imbibed more than my fair share. ;-)