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….
