Friday Barbie & I met with my oncology team. Usually such meetings are somewhat
hypothetical, as the key test, Free Lambda, takes 36-48 hours to come
back. Knowing that, I had driven down to
Beth Israel on Wednesday and had them take my blood early, so that the Free
Lambda would be known. Actually, the
results came back in less than 24 hours: 461.9 (new scale), which is 660.5 on
the old scale. Since 500+ on the old
scale was considered Multiple Myeloma at full rage, 660 is more than enough.
The reason Barbie attended the meeting was to plead for a
re-administration of the CAR-T Cell therapy at the newly recommended level. But I got a call from Elizabeth Dwyer, the
nurse administering the clinical trial, on Thursday informing me that my new
Free Lambda reading qualified me for the re-do.
They took blood for another Free Lambda test on Friday, just to confirm
that the reading was not a fluke. So,
the discussion on Friday was largely about the details of when to have the repeat
treatment at the higher dose level.
The issue of the dosage was a result of a judgement by the
company running the clinical trial, Blue Bird Bio. They had gradually increased the dose as the
trial went on, reaching a level of 450 X 106 cells just before I
entered the trial. Unfortunately, there
was a severe reaction to the 450 dose, so they fell back to 150 X 106 cells. That was the dose they gave me. Unfortunately, that dose turned out to be
only partially effective. There were
patients who had a complete response at that level, but there were more who had
just a partial response. I was one of
the partial response patients. Yes, my
Free Lambda came down, but then it went sideways. It never reached a “normal” level. They have since decided that 300 X 106 cells
is the correct dose. That is what I will
get when they administer the re-do.
Elizabeth Dwyer communicated with Blue Bird Bio, now Celgene
Corporation. They do have enough of my
CAR-T Cells to give me a 300 X 106 cells dose. It would just take them 3 days to ship them
to Beth Israel. I could start as soon as
next week. But next week I have a
Friends of Nigeria meeting in Delaware Water Gap, PA. Then the following week we have family coming
to New Hampshire, so we asked to delay the re-do until after Labor Day. The team thought that would be OK.
A re-do involves just the same process that I went through
last February. 3 days of lymphodepletion
chemotherapy, followed by a weekend to recover.
Then the infusion of the CAR-T Cells on a Monday, followed by 2 days of monitoring
every 4 hours. Gradually the monitoring
frequency is reduced until some of the tests are done just once a day. One has the privilege of staying in the
hospital for 14 days after receiving the CAR-T Cells, a form of torture by
inactivity. Then for another 14 days you
are supposed to stay within 30 minutes of the hospital and have someone
monitoring you all the time. For me that
means staying with Brian & Bridget in Jamaica Plain. It is great to spend time with the grandkids,
but it is an imposition on their family, and it further postpones getting back
to real life.
Barbie & I had all sorts of questions. There was a major report on the clinical
trial at the ASCO (American Society of Clinical Oncology) Annual Meeting in
Chicago in June. One thing I noticed was
that while there was a high rate of Complete Responses (CR) for those who got
the higher dose, CR did not mean the disease was gone. Instead, the mean time before the return of
the disease was 11.8 months. They refer
to this as PFS – progression free survival.
Which means the treatment can get you back down to the normal range for
whatever is your measure of the disease, but you may or may not stay
there. So, it has good results, but it
is not the magic bullet we were counting on.
Dr. Nahas did say that they have found that after the CAR-T Cell
treatment other drugs that formerly had ceased having any effect, often become
effective again.
We asked how the disease would return, given our
understanding of how the CAR-T Cells work.
There was lots of speculation, but it came down to the fact that there
are very few people who have been through the treatment. The clinical trial has been expanded to include
65 people, but statistically 65 is a very small number. And there are many different types of
Multiple Myeloma and many different types of patients. The conclusion was that it is still early
days, and we have yet to learn some of the crucial answers.
The ASCO report is a good source of acronyms. One that I like is RRMM. It stands for Relapsed/Refractory Multiple
Myeloma, which is required to qualify for the clinical trial. Barbie suggests that just as
some people put their academic or professional qualifications after their name
(ESQ, PHD, FAGD), I should put my disease classification behind my name: Gregory
Jones, RRMM. Sounds distinguished. Another way of saying a 3-time loser.
Meanwhile RRMM continues to make its presence in my body known. I get out of breath with relatively little
exercise. Dr. Nahas noticed that my
blood is iron-deficient, which would result in less oxygen being delivered by
the blood, so I am scheduled for an iron infusion on Tuesday. I complained of something in my right lower
abdomen, just along the fold where your tummy and leg join. As a result, they will perform a PET-scan,
which images your entire body. It really
feels as if something is in there, but what do I know?
We are very happy that I qualify for a re-treatment. But it becomes clear that our hopes for the treatment
were overly optimistic. Yes, it is a
good treatment, but no, it is not a magic bullet.
