A New Normal

I have not posted to this blog for a long time because I kept waiting for dramatic news to announce.  But no such news has happened, so maybe the non-news is worth explaining.  Here is a picture of my key blood readings since June of 2012:

The blood readings are on the logarithmic scale to the left; the medicine dose levels are on the normal scale to the right. 

I was diagnosed with Multiple Myeloma in June of 2012, with a Free Lambda reading of 1329.  That is against a normal max of 26.3, so I was 50 times the normal max.  Multiple Myeloma is a cancer of the plasma cells that generate blood in the bone marrow.  There are several different types.  My flavor of Multiple Myeloma results in the overproduction of the Free Lambda component of white blood cells.  Normally a white blood cell is created by joining 2 light chain cells with 2 heavy chain cells.  If the process goes wrong as it has in my case, it results in the overproduction of one of the light chains.  The light chains are called Free Kappa and Free Lambda.   In my case, Free Lambda is over-produced.  If left unchecked, the Free Lambda cells go berserk and change the composition of the blood, resulting in all sorts of damage.  In my case the primary symptom was the leaching out of calcium from the bones, resulting in compression fractures of my vertebrae.

In the summer of 2012 the combination of Velcade, Dexamethasone (a steroid), and Revlimid quickly brought the readings back to normal.  Then in November, 2012, I had a stem cell transplant.  A neighbor who contracted Multiple Myeloma several years ago had a stem cell transplant and then was in remission for 6-8 years.  So I had expectations of the same.  Things were normal until the second half of 2014, when my Free Lambda rose to dangerous levels.  So the disease was back in just less than 2 years.  Rats!  The doctors put me back on Revlimid, which initially brought the readings down.  But then Free Lambda spiked to 988 in April of last year, so they resumed the initial treatment of all 3 drugs.  This resulted in a dramatic decline, although not actually down to the normal range.  Since June 2015 the readings have ranged from 28.5 (8% over the normal max) to 65.9 (150% of normal max).  These blood tests have a high level of noise, so bouncing around is to be expected.  Since June of last year, there have also been an excess of Free Kappas.  No known reason why.  What really makes it confusing is that one of the measures they follow is the ratio between Free Lambda and Free Kappa.  Since they are both a little high, the ratio is just where they like it.  Go figure.

Needless to say, I was hoping the tests would get back down to the normal range.  They haven’t, but the doctors do not seem to get concerned until they rise to 5X the normal max.  So, I am on an ongoing regimen of 2 weeks of all 3 medicines, followed by a week of recovery.  I am feeling fine.  No symptoms of the disease itself.  Just side-effects of the medicines, primarily neuropathy.  Neuropathy is a result of damage to long nerves, so you get odd sensations in your feet and hands.  My feet feel as if my soles are doubly or triply callused.  Or like I am walking on marbles.  My hands only occasionally tingle, but I drop things far too often.  Was I always dropping things?  I cannot recall.

The strategy is to continue the current regimen of drugs until they stop working.  The pattern is that the disease eventually figures out a way to elude whatever drugs have kept it in check.  Clearly back in April of last year Revlimid alone ceased to be effective.  I asked my oncologist why he continues to prescribe it, and he said the 3 drugs in combination generally are more effective.  I am now in the stage of the disease called relapsed Multiple Myeloma.  That is to say the disease has come back after a stem cell transplant.  When it evolves to shrug off the initial treatment, then it becomes refractory Multiple Myeloma.  The good news is that there are now many alternative drugs available for treatment once the current drugs become ineffective.  Just last year 3 new drugs were approved for general treatment by the FDA.  Your support of the Multiple Myeloma Research Foundation by sponsoring runners in the Boston Spring 5K contributed to these advances.

So the goal is to make Multiple Myeloma a chronic condition, not a fatal disease.  Which is to say, the goal is to keep MM at bay long enough for something else to get you.  After all, we are not given a perpetual ticket to this life.  So enjoy it while you can!

P.S. The MMRF Boston 5K this year will be held on Sunday, May 1.  Those of you in the local area who would like to run or walk, reserve the date.  Last year we had 15 adults and 5 kids in strollers or on bikes.  Let’s see if we can have an even bigger team this year.  Those who can’t take part but would be willing to support those who do, expect to get an email once I have signed up.