Teresa and I spent yesterday at Memorial Sloan
Kettering. Unfortunately we didn't come home with news as good as we had gotten from other recent sessions there.
The short version is this: they found from a CT scan on Tuesday, December 11, 2018 that a few tumors in my liver which had been quiet have now woken up and grown a
little (roughly a centimeter in each case). Meanwhile a very small lesion in my
iliac bone (a “lesion” is a damaged area, and the iliac is the largest bone of
the pelvis), which they’ve been aware of but have never seen any clear
indication of malignancy from, has also grown a little, which raises a substantial possibility that this is a metastasis (a spread) outside the liver.
What to do? Well, we intend to fight the disease, which is
the strategy that has served us pretty well up to now. But it’s harder, because
we’ve already used most or all of the proven strategies. (Though perhaps not
all; we may talk with the doctor who administered the radiation this summer,
for instance, in case he sees something our oncologist – who was out during our appointment yesterday with
a respiratory illness, so we only really dealt with her nurses – did not.)
Assuming we’ve tried everything proven that Sloan Kettering offers, we might
actually sit tight, not getting treatment. This would not be because we’re giving up, but rather
because if the tumors in question are growing relatively slowly, then for my case (somewhat as in many cases of men with prostate cancer) it can actually make sense to be equally
patient – while we wait for researchers and clinicians to invent the next treatment that really works.
Or we may try experimental treatment ourselves. Experiments, in the form of clinical trials, are the process
by which those treatments that really work are found and developed. Getting a treatment that is currently unproven won't accomplish much if it turns out the treatment really doesn't work. But joining the trial means that you potentially get access to the latest possible approaches earlier than other people do, and if they work you get your
treatment before most of the world.
One especially attractive example of this would be the drug Keytruda, which you might remember successfully pushed back Jimmy Carter’s brain cancer. Keytruda is an immunotherapy drug, and it helps to have the right mutations for Keytruda and other similar immunotherapy drugs to target. So far it doesn’t seem that I have any particularly “targetable” or “actionable” mutations. But some people benefit from these drugs even without having the mutations at which they were originally aimed. The biggest problem with Keytruda, aside from the fact that it certainly doesn’t always work, is that it is expensive, unless they (Merck is the manufacturer) give it to you as a compassionate gesture. That they often do, and we applied for it yesterday.
One especially attractive example of this would be the drug Keytruda, which you might remember successfully pushed back Jimmy Carter’s brain cancer. Keytruda is an immunotherapy drug, and it helps to have the right mutations for Keytruda and other similar immunotherapy drugs to target. So far it doesn’t seem that I have any particularly “targetable” or “actionable” mutations. But some people benefit from these drugs even without having the mutations at which they were originally aimed. The biggest problem with Keytruda, aside from the fact that it certainly doesn’t always work, is that it is expensive, unless they (Merck is the manufacturer) give it to you as a compassionate gesture. That they often do, and we applied for it yesterday.
A second place for experimental treatment is in other treatments being tried inside Sloan Kettering itself. MSK evidently has two sets of first-round (i.e. very tentative) clinical trials
going on. One set involves immunotherapy (that is, treatment aimed -- like Keytruda -- at the
targetable mutations that I seem to be short of, but that perhaps aren’t
essential to the success of treatment). The second set involves, I guess, other experiments. It looks like we’ll be finding
out more about these in the next two or three weeks.
The third place for experimental treatment is, as you’d guess, in other treatments besides Keytruda that are being developed outside Sloan Kettering. Different
institutions are running their own trials. There’s a possibly promising one at
M.D. Anderson in Houston; another at the National Institutes of Health in DC;
and Teresa is applying her formidable web research skills to locating others
that show some promise.
So that’s the situation. I intend to work hard on finishing the 400,000 word version of my book (and if I can also produce a shorter version, more suitable for trade publication, so much the better); look forward to spending time
with family and friends; and, as I said, Teresa and I plan to keep on fighting.
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