An Odd Path for a Magic Bullet

I was surprised to see that my last blog post was just before I was released from the hospital.  Thanks to Celgene's requirement that any study participant spend the first 16 days post hospital release within 30 minutes of the hospital, I’ve had 16 days of hotel living and now 20 days at home since then.  I think of the hospital as prison, the hotel stay as being on parole, and coming home as making bail. 

While close to the hospital, I needed to have a "minder" with me 24/7.  I was fortunate to find Monica, a lady from Trinidad who provides personal care to elderly or infirm people.  She was a good sport as we shared space at the Resident Inn Fenway (great location during the World Series!), and took advantage of many interesting events occurring in Boston.  Barbie became my "minder" from mid-day Fri to mid-day Monday, allowing her to return to Stow for teaching, concert preparation and generally keeping things together at home.  Actually, I wasn’t really in the hotel for the full 16 days.  HUBWeek (a gathering for innovators, entrepreneurs, visionaries, and gadflies sponsored by the Globe, Harvard, MGH, & MIT described here) happened during the first week in the hotel, and I attended a number of sessions there, either with friends or with Monica.  They were quite interesting, and they were quite well attended.  Most of the events were in tents set up at City Hall Plaza, but some were elsewhere in the city.  Generally, I took public transportation to those events, and that may have been my downfall.  Specifically, there was a person sneezing on a Green Line train that was packed, so there was no way to hide.  At any rate the first weekend of my hotel stay / parole, I got a cold.  Scratchy throat on Saturday, followed by more advanced symptoms on Sunday.  I took a nap Sunday afternoon while Barbie studied her Samson scores.  When I woke up, my temperature was 100.6.  My instructions were to report any temperature over 100, which I did.  They said to come into the Emergency Room.  Long story short, they revoked my parole, and I ended up back in prison/hospital through Thursday.

Being confined to the immediate Boston area is not all bad.  I got to see a one-woman play about Black Incarceration.  Barbie, a great fan of getting around by bike rather than car, and I  toured  the Head of the Charles Regatta, which we had never seen, as getting anywhere close by car is impossible.  We saw a film about women kidnapped by Boko Haram, and got to speak with the producer of the film, who had been to Maiduguri (where I was stationed in the Peace Corps).  We saw "Sherlock’s Last Case", a theatrical production at The Huntington Theater.  I was going to visit the Isabella Stewart Gardner Museum with friends, but a Wednesday visit was postponed until the Tuesday after my renewed hospital stay, and it turns out the Gardner is closed on Tuesdays.  So it was off to the Museum of Fine Arts, as there are always exhibits there you never get to.  We think we take good advantage of the many cultural things in Boston, as we live just 25 miles west.  But my experience of semi-captivity in Boston is that we don’t take full advantage of those offerings.

Coming home is like making bail, but I am still under the control of the health care complex.  I have multiple felonies (Multiple Myeloma, a Stem Cell Transplant, and a Whipple) on my record, so I am not totally free and clear, but it is certainly nice to be home.  Just before I was released from the hotel they took 16 vials of blood and did a bone marrow biopsy (BMB).  A BMB involves taking a very large needle and jabbing it into the back of your hip bone, aiming to take a sample of your bone marrow.  That is where the multiple myeloma cells reside and do their dirty work, so the BMB is the ultimate acid test for this disease.  Actually, they take 2 things out of you.  First they take an aspirate of the liquid in the bone marrow.  Then they (try to) take some bone marrow itself.  In my case, the last two times the bone marrow has been too crumply for them to get any bone marrow.  They say the aspirate is good enough, but next time they plan to do the BMB in the Interventional Radiology department so they can better tell exactly where they are.  Apparently my bones have a lot of ridges and they are pretty hard, which makes it difficult.  As you can imagine, in spite of ample numbing, this is not a comfortable procedure!

To date I have primarily discussed the Free Lambda results in this blog, largely because I didn’t understand the BMB results myself.  The reports on the BMB are delayed by 10 days to 3 weeks, so they generally are not very timely.  There are 3 reports, 2 of which are completely incomprehensible.  The third is moderately understandable, but it really has only one number, and I was not always sure of its significance.  So I asked the nurse handling the arrangements for the Clinical Trial, Elisabeth Dwyer, to interpret the latest reports for me.  She went one better, and compiled a history of my BMB results.  Here is a graph she produced:

The discontinuity in the blue line is simply a gap in the data on 2/26/2018.  The orange and gray lines are taken from the analysis of the bone marrow.  That is why they have no data for the last 2 tests.  They also overlay each other on several early tests, as there was no difference between the high and low values.  At any rate, the above graph shows that I was pretty seriously sick in October of 2017.  That was 3 months after my Whipple surgery and during the time when I was blowing through a number of treatments that did not work.  The results were mixed following my receipt of CAR-T Cells on 2/12/18.  Since the higher dose of CAR-T Cells on 9/24, the blue line has been consistently going in the right direction, down.  The readings were 42 on 8/30/18, 29 on 10/9/18, and 25 on 10/22/18.

In contrast, the traditional measure I have been sharing with you in this blog, Free Lambda, has been mixed since my latest dose of CAR-T Cells.  Here is the picture of the last 13 months of Free Lambda, roughly the time corresponding to the BMB graph above:

The last reading before the bigger dose of CAR-T Cells was 685.6 on 9/14/18.  4 weeks after the CAR-Ts, it rose to 776.  A movement of 13% in the wrong direction!  Then on 11/5 it was 654.3, a 16% move in the right direction.  But in fact that is just 5% better than the last reading before the CAR-T cells.  However, I’ll take the better reading and convince myself that it is good news.

The problem is that the two graphs are significantly different.  They both show that I was very sick back in October, 2017.  Then, in spite of the fact that it was deemed that the various treatments I was given in the fall-winter of 2017 had failed, the numbers did come down.  There were far fewer BMB results, so the BMB line is straight, while the Free Lambda line is jagged.  Then in the spring of 2018, the BMB graph gives inconsistent results.  The bone marrow measurements differ from the aspirate numbers.  The Free Lambda graph shows that I got moderately better after the February CAR-Ts, but then progress stopped, and ultimately the disease returned by late August.

Whatever the numbers say, I am feeling really healthy.  I still cannot stand up straight, and I will never run any more road races, but I can putter around the yard or garden and actually get things done.  People tell me I’m looking good, and they have no reason to be buttering me up.

Could this treatment be the magic bullet?  I am allowing myself to hope so.  I have another BMB on the Monday after Thanksgiving, and that should give us more data to evaluate. 

We recently saw Hamilton in Boston, and really enjoyed it.  There are 2 duels in the play.  In each instance, at the point of the shot the action goes into hyper-slow motion, and a dancer shows the path of the bullet with her hands.  It feels as if two different dancers are carrying the message of the state of my Multiple Myeloma via the BMB and Free Lambda numbers.  The fact that the numbers go in different directions a month after the administration of the CAR-T cells may be only a bit of poetic license that the playwright of my life is throwing my way.  Maybe one of the dancers stumbles a bit or the data just has a natural variability.  At any rate, what matters is how I feel, and I am feeling like the bullet has already arrived, and it is MAGIC.

Meanwhile the big event in our lives is Barbie’s concert on the 18^th, which promises to be quite the show.  Handel’s great oratorio "Samson" is a big, complex work that Barbie has been obsessively preparing since the summer.  She has assembled a great batch of soloists, the orchestra is better than ever, and the chorus has been thoroughly taught.  This will be the highlight of the Sounds of Stow’s 40^th year.  Do come if you have any taste for classical music.  The fall concert always kicks off the holiday season for us as it is followed by a big party at our house and a family get together for Thanksgiving.   This year, it will be followed by a two-week trip to Hawaii, where we will be joined by both my sisters.  We both look forward to a get-away following another period of treatment and uncertainty.  But at the moment, things are stable and I am feeling good.  MAGIC.