Here’s the latest news: It appears that
the new tumor really is a new tumor – it didn’t exist before November 2016 and,
based on the blood biopsy they’ve already done, it seems to have a different
genetic makeup than my earlier tumors did. Our oncologist feels this is a
development that needs to be nipped in the bud, so she’s switched my
chemotherapy. I’m now off the old systemic drug, gemcitabine, which she feels
should have stopped this new tumor from growing if it was still as effective as
it should be. She’s also stopped the pump chemotherapy drug, FUDR, though we
think she hasn’t altogether given up on this one. Instead of all of this, she’s
now put me on a biweekly dose of two new chemotherapy drugs.
One I get at
Sloan Kettering: irinitocan (nickname: “I ran to the can” – but fortunately I
haven’t had much digestive excitement, yet). This one is actually preceded by
yet another drug, leucovorin, a “folic acid derivative” which evidently paves
the way for irinitocan to be as effective as possible by enabling it to stay in
the body longer. Leucovorin isn’t exactly a chemotherapy drug in itself,
however, which is why I said I’ve started on two new chemotherapy drugs, even
though in fact I’m getting three new medications.
The other
chemotherapy drug is called 5FU (also known as fluorouracil), and is apparently
related to FUDR, which is one reason we don’t think Dr. Lowery has given up on
FUDR. (Teresa thinks that the pump chemotherapy had to stop for the time being
so that I could get as much systemic chemotherapy as possible, and that
tradeoff makes sense especially if the 5FU is actually delivering a hit
similar to what the pump FUDR would have.) I get part of this at Sloan
Kettering in an injection called “the push,” but then the rest of it – “the bottle”
– comes from a little cylinder called a Dosi-Fuser (diagram here), which
continues the delivery of the medication via my port over a 48-hour period. I
am not thrilled to be attached to this cylinder for 48 hours, but it’s only an
inconvenience so I will get used to it. Actually it’s also bad for my
reputation as an arbiter of fashion, but that too I will endure.
The plan is for me to do four rounds of
these drugs – each round separated by two weeks – and then it will be time for
another scan, probably in late March, to see whether they are working as we
hope. My first round was two weeks ago, the second concluded earlier today. The
side effects from the first round were not much fun; apparently “flu-like
symptoms” are not uncommon, and I had something on those lines for a few days,
and not much energy for several more days after that. But in the course of all
this I remembered that the first round of my original chemotherapy, back in
December 2015, also was pretty tough (I wound up in the emergency room with a fever, which fortunately they brought under control quickly). But once I got used to the routine
it actually went quite smoothly for many subsequent rounds. This time, for the
second round, Sloan Kettering prescribed additional anti-side-effect drugs to
accompany the chemotherapy drugs themselves, and we’re hoping that the net
result will be gentler. In any case, I felt well enough to travel with Teresa
to see my daughter’s college dance company – which she’s loved for four years
and is now the company manager of – have their spring show. And my Dosi-Fuser
stayed reasonably well out of sight!
As part of all this, Teresa’s medical
expertise is expanding. You may remember that when the incision from my pump
surgery opened up slightly, it was Teresa who dressed the wound every day till
it sealed itself up nicely. Now it’s Teresa who disconnects the Dosi-Fuser from
my port when the 48 hour delivery period is over. The first round Teresa did
the disconnection step by step under the guiding eyes of a very helpful nurse
at Sloan Kettering, but for this round Teresa disconnected me at home,
following just the video and written instructions that Sloan Kettering gave us.
Everything went smoothly – yay, Teresa! (And the great advantage of her
disconnecting me at home is that we don’t have to spend half a day going into
New York City to have the same thing done by their staff.)