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Monday, October 3, 2011

Cycle 2 Test Results

To review, in July, I was diagnosed with Multiple Myeloma based on the following criteria:
  • Monoclonal IgA Kappa level > 3000 mg/dL:   (3180)
  • Bone marrow biopsy plasma cells > 10%:   (62%)
  • International Staging System (ISS) Level 1 (B2-M < 3.5 mg/dL, albumin >= 3.5 mg/dL):  (3.3, 3.5)
Fortunately, I had no organ or tissue impairments (no bone lesions, normal calcium levels, and normal kidney function).  My only symptoms were osteopenia of my lower spine (from MRI) and moderate anemia.  Even  the osteopenia was not deemed severe and was within normal bounds for someone my age.

As you know, after the first infusion cycle in August, the results were excellent, showing about 80% reduction in the M Spike and IgA levels.

Last Tuesday, 9/27/11, I had blood drawn and turned in my 24-hour urine sample to get my protein levels checked after the second infusion cycle.  The lab tests for both the blood serum and urine include Protein Electrophoresis and Immunofixation, which provide a measure of the M Spike and determine the IgA, IgG and IgM immunoglobulin levels.  A serum free light chain test was also performed to determine the Kappa and Lambda light chain levels and ratio.  I have been anxiously awaiting the results all week, and I finally got  the final numbers today.

The bottom line is that things are still going great!  This past month showed another significant decline in the gamma M Spike and IgA levels.  The following table shows how the major results have progressed since August 1.

Test Name Reference Range 8/1/11 8/30/11 9/27/11

Gamma M Spike 0 g/dL 1.96 0.41 0.13
IgA 70-400 mg/dL 3180 659 148
IgG 700-1600 mg/dL 246 248 292
IgM 40-230 mg/dL <5 9 15
Kappa/Lambda ratio 0.26-1.65 578 26.7 4.5
24hr urine total protein <102 mg/24 hr 392 60 38
Albumin 3.7-5.3 g/dL 3.5 3.8 3.7
Beta2-microglobulin <2.7 mg/L 3.3 1.9 1.8
Red Blood Cell Count 4.2-5.6 M/mcL 3.4 3.7 3.9
Hemoglobin 13.2-16.7 g/dL 11 11.3 11.7
Calcium 8.8-10.5 mg/dL 9 8.8 9
Blood Urea Nitrogen 9-25 mg/dL 12 14 13
Creatinine 0.7-1.3 mg/dL 0.9 0.9 0.8 

As you can see, the M spike is down 93% so far, and the IgA level is down 95% into the normal range!  The Kappa/Lambda ratio is down 99% to a nearly normal level.  The urine protein is also down 90% and is well within the normal range.  Also, beta2-microglobulin and albumin are back to normal levels.  All this is good, implying that I have already achieved a Very Good Partial Response (VGPR) according to the criteria I showed in my last post.

I am still anemic, but those numbers (RBC and Hemoglobin) are improving.  The other numbers show that my calcium and kidney functions remain fine.  I am thrilled!  I realize that there is still a ways to go here.  My IgG and IgM numbers are still below normal and the M Spike hasn't gone away yet.  However, these are very encouraging results.  I don't want to get too far ahead of myself here, but I am very hopeful of achieving a Complete Response (CR) after a few more infusion cycles.  That would be totally awesome!  At the risk of repeating myself, I feel like I'm a really lucky guy.

Now I'm going to share something that I wasn't sure I was going to blog about.  However, since this blog is about my journey, I should probably share most of the relevant events that occur along the way, however embarrassing, humiliating, or downright stupid they might be.  Now I'm sure there are a few of those among you who think that I'm a pretty smart guy who has my shit together.  Well, for those of you in that camp, I'm about to disabuse you of that notion.

Last week, the unthinkable happened.  While we were at DFCI for my first infusion on Cycle 3 of the protocol, I had brought my empty vial of Revlimid with me.  (Don't ask me why...Gretchen did, but I had no valid answer.)  Anyway, after picking up my new prescription and taking my first capsule, I decided to finally throw away the old empty vial in the trash bin on our way out.

The next day, Gretchen left for a few days to visit her friend, Marilyn, in New York. I forgot to take my Revlimid at the normal time of 5:00, but I suddenly remembered it as I went to bed about 11:00.  I went to get the prescription out of my valise, and you guessed it...the vial was empty!  I had thrown away the full bottle of Revlimid and brought home my old empty prescription.  I suppose you can imagine my state of mind at that point. In addition to feeling I richly deserved a "Hi, I'm Stupid" stamp on my forehead, I thought about the implications of tossing a $3,300 bottle of pills down the poop chute.  Did I think Blue Cross would be understanding about this?  NOT.  Oh yes, and missing too many doses and maybe getting thrown off the clinical trial, get the picture.  The stupidity, the embarrassment, the humiliation, Oh Shit!

You know, there is an interesting thing about getting diagnosed with an incurable fatal disease.  It changes one's perspective on life.  There was a time when something like this would have devastated me for days.  However, as upset as I was, I figured that, "This too shall pass".  In the grand scheme of things, the money doesn't matter, and somehow, things would work out.  Someday, I would look back on this moment and chuckle...ha ha ha.  It was too late to do anything about it then anyway, so I went back to bed and actually fell right to sleep.  I'm glad Gretchen wasn't home to share the agony of this.  I think she would have been more upset than I was.

The next day, I started working the phones early.  Thank God for Dana Farber and Kathy Colson.  When she heard the news, she went right to work.  By the end of the day, she and her team had a new Revlimid prescription all ready for me to pick up the next morning.  Not only that, but Celgene was going to charge me $300 to replace the prescription (still better than $3300), but Kathy talked them down to $20!  I couldn't believe it!  Have I mentioned before that I think I'm one lucky person?  I didn't deserve to step in shit and come out smelling like a rose, but it happened. 

Now you know that I'm just a normal stumbling idiot, trying to muddle my way through, just like the average schlemiel.  By the way, I don't think I'll ever take an empty bottle of medicine back to Dana Farber, ever again!

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