Good News, Bad News

I haven’t posted since 4/13/18, as I have been waiting for a resolution to what is happening with me.  Since that is unlikely to happen any time soon, I will attempt to describe the current situation with all its uncertainties. 

If you consult the graph of free lambda readings following the infusion of “weaponized” CAR-T cells on February 12th, what originally appeared as a jagged lightning bolt going down turned into a hockey stick in April. Through April and most of May, things went sideways.  Slightly up, but not drastically so.  It was as if the CAR-T cells were resting. 

Then at the end of May there was a dramatic uptick.  Free Lambda went from 465 to 552, an increase of 87 or 19%.  This indicated the disease was progressing.  The person who monitors clinical trials at Beth Israel contacted the people at Bluebird Bio, to see if they had enough of my weaponized T-cells for another dose.  The answer was yes, and the recommended dose was 3 million cells.  That revealed something I had not realized before.  I had assumed that since I was relatively late in the clinical trial that the optimum dose had already been worked out.  Not so.  They had gradually increased the dose during the clinical trial to 4.5 million cells.  At that level several of the patients had severe reactions to the treatment.  So they scaled back the dose to 1.5 million cells, which is what they gave me.  It would appear that 1.5 million is not enough, and if I were to get a new treatment, the dose would be 3 million cells.  Maybe that explains why my free lambda went sideways during April + May and shot up at the end of May.  Maybe.

Actually, the dosage issue was a bit of a relief.  I had not realized how much I was counting on this treatment being the magic bullet to cure my multiple myeloma.  But how could it be a magic bullet if the disease was still acting up?  Did I have myeloma cells that did not express the protein the T-cells were primed to look for?  Did some of the blood samples that the clinical trial required to be collected every month have information that would explain the continued activity of the disease?  I asked these questions of my doctors and the clinical trial person, but apparently the scientists at the company running the clinical trial don’t release information to the local doctors until periodic times later in the trial.

However, they don’t act on a single reading, because of the variability of the tests.  So, the following Friday I had another free lambda test.  We were planning to attend a niece’s wedding in Florida 2 weeks after that, but if need be, I was willing to skip the wedding to get the re-treatment.  Clearly I was hoping for another bad reading.  So, naturally, the reading was good.  A new low since a year ago: 421.6.  Since the reading indicated the multiple myeloma was not progressing, I did not qualify to receive a new batch of CAR-T cells.  So the good news was also bad news.

What a bummer! 

But 421.6 is actually good news, so how do we deal with that?  Does it mean the CAR-T cells have suddenly come back to life?  Was there some combination of side infection or other things going on in my body that hampered the action so the CAR-T cells?  We don’t know, but better is still good. 

Then, just to prove how perverse this all can be, I had another reading this past Monday.  Back up to 511.2.  The wrong direction again.  Sigh.  Here is the overall picture of the last 15 months:

So I won’t be getting a re-treatment of the CAR-T cells anytime soon.  I asked if the latest reading confirmed the uptick to 552.  No, it does not.  But the good news is that I won’t have to sacrifice a month of my summer to being in the hospital or close to it receiving the cells.  So the last interaction with the oncologist this past Monday was, “See you in a month, but if anything happens in the meantime, be sure to get in touch with us.” 

But wait.  Early Wednesday morning I awoke with a painful stomach ache.  I got up and took some pain killers, but they didn’t really have much effect.  In the morning I got up and took my pills, but I still felt rotten, and in very low gear.  45 minutes after taking my pills, I threw up.  So I called the medical teams, both the multiple myeloma team and the surgery team that did the Whipple surgery a year ago.  They both said to come into the hospital.  I went into the multiple myeloma team.  They took some blood, listened, and poked around, but had no idea.  They sent me for a CT scan of my abdomen and administered some IV fluids because I hadn’t drunk any liquids all day.  They were about to release me to go to my son’s house in Jamaica Plain when the results from the CT scan came back: an obstruction in the small intestine causing a major backup in the intestine above the blockage.  The first time in a long time that a diagnostic test actually provided a clear answer!  So it was off the ER while they figured out where and how to admit me.  Just as the ambulance people arrived to move me to the West Campus of Beth Israel, I threw up a second time.  Both eruptions were quite large, very liquid, and pretty clearly stuff that was in the midst of being digested.  I felt MUCH better after throwing up.  And throwing up was good in that it relieved the pressure on the obstruction, making it easier for it to resolve itself.  Early the next morning after being admitted to a room that was in the surgical domain, I had a bowel movement that apparently was the blockage ‘passing’.  Problem solved, all within 24 hours.  But convincing the doctors that I was OK and could be released took until 2:30, but I was able to make a local 5PM meeting here in Stow.  Just a small amount of drama.  So we can now resume our normal programming, worrying about the next step in my multiple myeloma saga.

Predictable and inevitable complications of the Whipple surgery, performed exactly one year ago today, piggy-backing on the multiple myeloma make for continued roller coaster rides and unpredictable trips to the hospital.  Barbie finds it very difficult to make definite plans for anything, and we have continued to rely on Brian and Bridget’s hospitality.  Multiple friends have also helped in driving to and from Boston.  “It takes a village to raise a child” can just as easily apply to the process of helping someone through the vagaries and demands of a major illness (or two).

Stay tuned….