Mapping out the Strategy

Sorry for our prolonged silence over the past few days. The trip to Houston was an emotional roller coaster and it took us a while to come out of it.

After we met with the radiation oncologist, we were next scheduled to meet with a surgeon and then hear the results of the tumor board -- a meeting of all the doctors we saw plus other experts to give us recommendations on next steps. The surgeon made us wait for three hours, and then barely made eye contact during the 15 minutes we spoke with him. That was kind of a bummer experience, since we were interested to learn if he thought removal of the lymph nodes was a possibility. He didn't seem to think so.

The tumor board was a rather mysterious process, but here is what we learned:

1) The radiation oncologists and radiologists can not agree on what the scans are showing. They all agree there are two clear hot spots, but there is some diffuse material showing up on the scans, and they can't agree on whether it is scar tissue or diffuse micro-tumors. Accordingly, the tumor board continues to believe the liver is the priority.

2) The doctors don't believe Kurt has achieved "maximum chemo benefit," so they recommend he attempt to continue chemo for not more than 8 months. If we agree to that, we will probably have to switch drugs at some point, since these ones are starting to produce more and more side effects.

3) They do believe chemoradiation (getting chemo and radiation at the same time) is an option, but they want to push chemo harder first. Evidently, when chemo is administered in conjunction with radiation, the dose of chemo has to be cut back. So, while Kurt is still seeing some tumor reduction from chemo, they don't recommend reducing dosage. Once he has achieved that maximum benefit, then radiation is more appropriate.

4) Surgery is not recommended at this time, because Kurt would have to stop chemo entirely for about six weeks, risking regrowth of whatever tumors surgery can't get to.

5) The ideal pathway is chemo until the liver tumors are gone and then radiation to the lymph nodes. The radiation is tricky, because there are organs in the area that are sensitive to radiation, so they need a very state-of-the art radiation (proton beam) that is only done at a couple of places in the country. We couldn't ever get clarity on what the doctors will recommend if the liver doesn't respond to chemo.

That was a lot for us to process and, truthfully, we still are processing. Kurt spoke with our doctor here, Dr. Donehower, and they agreed to skip treatment on Friday until we could meet and discuss next steps. The team from MD Anderson sent all their recommendations to Dr. D., and we are meeting with him tomorrow morning to review and decide. Assuming Kurt decides to continue with the drugs he is currently on, he'll get treatment on Tuesday.

I'm really not sure what will come of tomorrow. I have a gut feeling that 8 more months of chemo is the wrong approach -- too conservative. I am worried that the tumors in the esophagus may grow back or that the cancer will spread further if we wait that long. I feel like we have the disease on its heels and I want to deliver the knockout punch. I'm just not sure what that is. It was such an enormous relief to see the PET scan show good results, and we actually heard doctors at MD Anderson talk about getting Kurt on a "curative path" -- that was the first time we heard that! But, I just don't think that the chemo path is the right call. I'll be interested to see what Dr. D. thinks.

Also, Kurt still has the option of an NIH study - he has been chatting with the nurse over there. And, one of the more advanced therapies that we learned about in Chicago -- the yttrium-90 microspheres -- is still something we want to explore. Evidently, the doctors at MD Anderson don't have much experience with that (weird, right?) so we didn't get much feedback from them.

Whew. That's a lot. It is helpful to type it all out ... organize my thoughts a little. Tomorrow should be an interesting day. We'll let you know what we hear.