Where things stand now

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.)  

Meanwhile, Teresa feels that our anti-cancer visualization efforts over the past months were incomplete. We focused on wiping out the existing tumors, and they did in fact get smaller. But we forgot about also preventing the emergence of brand new ones. So we plan to be more comprehensive over the coming weeks, and hope that those of you who’ve been sending thoughts and prayers our way – all deeply appreciated – will do so too!