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 18th, 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 40th 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.
