I haven’t blogged for a while, as life has been pretty normal
recently. As explained in my last blog
post, my immune system was not strong enough to fend off colds from my
grandchildren. Since my last
hospitalization at the end of December, I have been quarantined from my
grandchildren, so I have stayed well. I
have resumed exercising, and I have been feeling really well. Dr. Levine, my oncologist, said I must not
see my grandchildren until springtime.
Well Spring arrived on 3/21, so in spite of the snow still on the
ground, I saw the grandchildren.
This past weekend Barbie had a concert on Sunday, 3/23. The concert was a triumph. A Tchaikovsky cello concerto and the Brahms
Requiem. Everybody – audience, chorus,
and orchestra – agreed that the performance was top rate. Barbie really knew her stuff, and she got
everybody to work together and create beautiful music. All 3 grandchildren were here for the weekend, and I got to be
with them for varying lengths of time. I
noticed significant differences, just in the 3 months since I was last allowed
to see them. Emma in particular is now
quite a climber, and if you turn your back on her she is into or on top of
something in no time flat. Actually, as 3-4
days have now gone by, I have started to get cold symptoms. Nothing intense yet, but proof that I still
need to be careful, in spite of the calendar.
In a month I plan to run in the MMRF 5K race in Boston,
4/26. In a repeat of last year, we have
a team named Greg’s Legs participating, either as runners or as walkers. Please go to support.themmrf.org/goto/GregsLegs
to sign up to run or walk with me or to support those who are participating by
making a donation. I happen to be MM
free right now, but when it comes back (which it always does) the drugs that
worked so effectively in my first encounter with the disease are unlikely to
work as well. The logic of big numbers
and natural selection works against me.
The drugs that worked well initially got all the MM cells that were susceptible to their effects. Probably 99.999% of the
MM-affected white blood cells. But that
means .00001 of the white blood cells survived.
Given that there are about 40 billion (4 x 1010) white blood
cells in the normal body, that means 400,000 (4 x 105) survive, and
some of them are likely to be bad. And
since they survived the onslaught of the drugs they treated me with back in the
summer of 2012, those drugs will have little effect when the MM comes
back. So the doctors need to use
different treatments for recurrent MM.
The net result is that my chances improve as they develop more weapons
to fight the disease. I don’t mean to be
self-centered, but being vulnerable suddenly makes you a big fan of anything
that can improve your lot.
Here is a picture of last year’s participants, ranging in
age from 69 (me) down to 4 months (Brendan):
Thursday I had a monthly checkup with Dr Levine, my
oncologist. He gave me a new way of
thinking about the disease. He said all
cancers grow at predictable rates, and when the tumor burden reaches a critical
level, then the human body is overwhelmed and you succumb to the cancer. Here is a picture Dr Levine drew (with his
hands):
The basic idea is that the cancer grows at an increasingly
faster rate, a logarithmic rate. A lot
depends on the units on the time dimension.
For example, leukemia happens to be a fast-growing cancer, so if you
kill off 99.99999% of the leukemia cells and set the disease back to the
left-hand side of its curve, you only buy a few weeks, as the cancer grows fast
enough to reach critical tumor mass in that short a time.
Multiple Myeloma, on the other hand, happens to be a
relatively slow-growing cancer. It takes
years to do what leukemia does in weeks.
So my initial treatment and the stem cell transplant, by setting the
disease back to the far left of the curve, buys me several additional
years. They don’t know how many because
they don’t know how fast my particular cancer is growing and they don’t know
exactly how far back they set it.
Furthermore, a mutation may happen that can have negative results. The mechanism that tells cells they have done
their job and they can now die off can get turned off. Or the rate at which the cancer cells choose
to divide can get accelerated, thus increasing the speed of growth. If either of those things happen, then I will
be back dealing with the disease sooner than expected.
Dr Levine did say that the medical profession now has many
tools at its disposal to treat the disease, so he did not want to be overly
gloomy. He did not have time to go into
exhaustive detail, but he did say that they have good treatment options. I am a member of the MMRF (Multiple Myeloma
Research Foundation), so I get monthly emails from them and a quarterly
newsletter. They are always recruiting
for people to join in clinical trials.
They also list the many new drugs they are helping to sponsor and the
stage of development they are in.
Recently they have announced an open-source database of people
participating in various clinical trials, including not only the results of
their treatment but their key genetic information as well. This is normally information that is held
closely by the companies developing the new drugs, so that they will have a
competitive advantage. Clearly the MMRF
was powerful enough to negotiate with the drug companies to change their normal
“rules of engagement”. I was certainly a
fan of open source software in the computer ecosphere. Let’s hope that open source clinical trial
information will have a transformative effect on bringing new therapies to
market.
The message of this blog post is pretty simple: Go to support.themmrf.org/goto/GregsLegs
and sign up or donate. Last year you
were incredibly generous. Thanks, and
please be as generous again this year.
