Houston updates

Today I was going over my medical history with a nurse at MD Anderson when she interrupted me and said, “What happened to your wrist??” She was the second nurse to ask me about it today. I assured her that I was fine, that I had accidentally poured near boiling water on it a couple of days ago while making tea but that it didn’t really hurt. A few minutes later she asked about it again and suggested I let her put a salve on it and wrap it up. I passed on the offer.

Apparently I have a high tolerance for pain. When the doctor came in, he introduced himself and said, “Well, you look good!” We talked through my symptoms and how I came to be diagnosed with cholangiocarcinoma. He gasped at my wrist and then pressed around on my tumor and asked if it hurt. It didn’t. I explained that I have pain/nausea/fatigue, especially while driving or riding or sitting, but that mostly symptoms come and go and are manageable. We talked through the pros and cons of different treatment options, and the more we talked, the more flummoxed he seemed to become.

“Look,” he finally said, “The person I see in your scans and blood work and the person I see in front of me are two totally different people. You seem vibrant and healthy, and you are here talking to me intelligently as if nothing were wrong. Based on your scans, I expected you to be so sick that you would barely be able to sit up.”

He wondered aloud if perhaps I have had the tumor for years and if I may have gotten it from some sort of chemical exposure, such as cleaning out gasoline tanks (I’ve never cleaned out a gasoline tank). He just couldn’t seem to make sense of why I am doing so well with such a gigantic tumor taking over my liver. He asked about pain meds, and I told him I take Aleve occasionally. He said he would call in some pain medication. “I’ve looked at the scans,” he said, “And it looks painful!”

Not only is the tumor large, but my liver levels are high (even though they have dropped over the past few weeks), so high that I am not currently eligible for his clinical trial. He did more lab work today to see if they have changed just in case. He also did not recommend I join the trial at UT Southwestern. One arm of the trial doesn’t include chemotherapy, which he seems to think is necessary, and it also includes a drug that has caused tumors to grow rather than shrink in some patients. No thank you.

The two options he gave me were:

1)    Do a three-drug chemotherapy in Dallas. All of the drugs have been approved and are ready to go, so no need for a trial. The chemotherapy would shrink the tumor and buy me enough time to take advantage of new developments and/or trials in the future.

OR

2)    Potentially join his trial if my liver levels are low enough, which would essentially be the same scenario as above, unless it turns out that I have the genetic marker that is targeted by immunotherapy in his trial. A piece of my liver has already been sent to a lab to determine any genetic markers, but I don’t have time to wait for the results before starting some kind of treatment.

I have a follow-up appointment Thursday afternoon to get his final recommendations after he has had time to do some research, so I'll be hanging out in Houston for a couple more days.