Health / Treatment Update

Quickly: I added a couple of pictures from the trip to Avalon in the entry on Thursday, Sept. 6th “Lots and Lots to Update” (two sections below).

For those wondering whether I still remember that this site was supposed to serve as the medium for keeping people informed and up to date about Sandy’s health—not just our family “doings”—I thought now might be a good time to tell you where we are.

In the last few weeks, Sandy has had a series of repeat scans and we have met with the doctors to discuss the results. These scans are conducted as a matter of course, not necessarily in response to any specific or new concerns. Usual technologies employed are MRI and CT, and they are repeated regularly, every 90 days or so. To put it simply, the intent is to provide a benchmarking process through treatment, and to monitor for any changes. The recent scans were performed in the course of this regular schedule, and really did not tell us anything new. They neither suggested that anything has changed, nor indicated that any changes in treatment are warranted. No changes. That’s good. Let’s move forward.

You probably recall that Sandy started this course of treatment in June—relatively heavy doses of the chemotherapy drug Xeloda, which converts to 5-FU when metabolized. I say relatively heavy because they proved to be heavy for Sandy, individually. The medical oncology team at Hopkins, which is responsible for her care using chemotherapy medicines, has continually adjusted her doses and the use of other meds to try to settle on a regimen that is both tolerable and believed to be effective. She is now following a regimen that includes a single, daily dose of Xeloda (one-sixth of the original dose) each day for one week. She then receives a beast of an injection of human growth factor (HGH) called Neulasta. This is similar to the daily injections that we gave her before, but this is a slow release growth factor that that lasts for two weeks. During this time, she does not take any chemotherapy. The treatment is now one week on, two weeks off. The growth factor helps her body recover more quickly, replacing white blood cells that are beaten down by the chemotherapy. This “recovery time” allows her to take the chemotherapy drug more consistently.

Sandy still suffers side effects, which include some mild and intermittent nausea and fatigue from the chemo. The growth factor produces similar symptoms and adds some aches and pains in her bones and joints. All together, these symptoms are still lighter and easier to tolerate than many that she has suffered through most of this year. She remains pretty active and her spirits are good. She has even been out on a couple of bike rides with the girls in the last couple of weeks. The lower dose seems to be agreeing with her in other ways, too. Her hair is coming back in nice and full and looking healthy.

The plan remains to continue this treatment through the end of November. Six months is the limit to the amount of time patients can be on this chemotherapy drug. That seems like a log time, as I write this. However, in context of the last 2+ years, or even just the last 8 months, it seems like it’s just around the corner. That’s only a little more than 60 days from now.

One of the questions people ask is “How is the liver doing?” The liver is doing well—fortunately, not even a hiccup. She has only had this organ since February, and it functions perfectly.

Something we have learned through this process is that all the imaging technologies and lab results still leave a pretty unclear picture. Ambiguous is the word that comes to mind. Add to this lack of clarity the relative inexperience that the medical community has with this setting—diagnosed cholangiocarcinoma, post liver transplant (and whipple), in the present setting of chemotherapy. Oh yeah—radiation and chemo were done before the transplant, too. There just is not much experience with this kind of case anywhere in the world. I am sure that you have sensed the ambiguity on this blog and in regular, day to day conversations with me or Sandy. Hopefully, we don’t come off being vague or evasive. We really don’t know a whole lot more than what we tell you, and it is the ambiguity that we all have to live with.

Enjoy the fall-- the weather has FINALLY turned beautiful here! It seems like we went from 98 degrees with oppressive humidity just a week ago to 74 and a nice breeze now.