What's Next?

This whole mess started exactly two years ago. We had just returned from Michigan, where Sandy had noticed some odd itchiness on the bottoms of her feet that she could not explain. Shortly after that--a year ago next week--we went to the beach with the Grandy's. It was there that the jaundice first alarmed us. Within a few days of that trip, and as a result of some intensive attention from our good friends and physicians at Hopkins, Hunter Young and Mark Sulkowski, Sandy was on an OR table getting her first ERCP. That resulted in the diagnosis of Primary Schlerosing Colangitis, PSC. The doctors were very concerned about the presence of cancer at that time, but could not prove it. That is when we started to learn just how elusive this cancer is.

Two years.

"What's next?" you ask. Sandy had blood drawn upon our return from Michigan yesterday, and we await those results. We expect that those labs will confirm that she is clear to resume chemo, which will probably start today. The dose will again be reduced, this time to a single 500mg pill, once each day. You can compare that to the original dosage of THREE x 500mg pills taken twice daily (total 3000mg) and see that there is quite a difference. She will likely take the single pill at night, so that the worst of the symptoms occur while she is asleep. Hopefully, Sandy will be able to tolerate this a little better now and life will be better.

The original plan for this round of chemo was to administer it daily, in three week cycles, for a period of four months. Under this scenario, Sandy would take the prescribed dosage each day for a period of two weeks, followed by one week off to complete each three week cycle. Then, take the pills again for another two weeks, take the third week off, and so on...for a period of four months. That would have completed the treatment by September, according to the original plan. The team of oncologists working with us is now discussing extending chemo through the end of November. No decision has been made on this yet, either by them or by us. This will be influenced by the next set of scans, of course. Those scans are scheduled for early September, so stay tuned.

One thing you learn through an experience like this is that oncology is not a precise science. Couple that with the fact that Sandy's case is so unusual and there just is not much data to rely on in this setting--the application of chemotherapy with cholangiocarcinoma patient who is post-transplant.

"Uncharted territory," is a phrase we have heard often.

This weekend, we head to the beach with the Grandy's--always a good time and the weather forecast looks fantastic. Low 80's, breezy- perfect beach weather. The girls are excited to spend time with their friends...and one last break before school starts!