Clunk!

Marisa says: Living with this disease, it seems like you are always waiting for the other shoe to drop, waiting for when the wheels will fall off the wagon, or whatever other saying you want to insert here. Always waiting. You go along status quo until…something changes…bathroom habits, pain level, swelling in the legs…and all of a sudden, it’s like you are stuck, unable to focus, let alone move forward, until you know what horrible thing must be going on inside you. Your head just knows that this is it. The beginning of the end. The downward spiral. The end of the road. It’s hard. It sucks. It’s the nature of PC.

Upon our return from the cruise, we were sent directly to the ER in Charlotte so they could do another ultrasound to check for a blood clot. Fortunately, all was still clear. Unfortunately, the worry had already begun, back on the ship. Was Scott’s stomach bigger? Was there more fluid in his abdomen? Was that why there was swelling?

The Monday after Thanksgiving brought blood work, to see what the liver was doing prior to Tuesday’s already-scheduled treatment. Tuesday, we met with the doc who was concerned about the abdomen and how lousy Scott stated he was feeling, so he scheduled a scan to see what was going on in there. The initial review was that things appeared stable, no additional ascites was present, and Monday’s liver enzymes were good, so we went ahead with the scheduled chemo, Abraxane.

And then the radiologist’s report came in…

Clunk!

Progression in the liver.

Honestly, even our oncologist didn’t believe it initially. He sat down to review the scan with the radiologist in person, to look at the scans and understand why the report was so different than the initial thought. (The radiologists have super big, high definition monitors, you know.) And upon review, yes, there appeared to be progression in the liver. Some of the tumors in there had grown. But then, you have to compare the scan to the one before it, and the two scans were not done exactly the same way, so it makes it tricky to compare. Aargh! If you are comparing things, you want to be able to compare apples to apples, not apples to kumquats. Also, large chunks of Scott’s liver had been fried in the ablation, so maybe it was all ablation defects, not progression. And if the abraxane really wasn’t working, well crap, for the first time, we didn’t have another plan queued up to proceed to and we had to figure out what was next.

The onco decided to do a PET scan, so we could really tell what was going on in there – Scott’s first one. There was a good bit of anxiety about it (“what if I light up like a Christmas tree?”), but we needed the info to figure things out.

[A word on PET scans - Instead of the normal CT scans which have shown where things are to date, becuase they show structures and you can tell what is there (and what is not supposed to be there), a PET scan works differently. How it was explained to me is this - PET scans show degrees of brightness based on a radioactive sugar isotope that you are given to drink. The tumors take up the sugar rapidly, greedy bastards that they are, and so, when reviewing the scan, they show up brightly. When overlayed with a concurrent CT scan, you can tell what is shining brightly where - and where your trouble spots are.]

As you can imagine, in the midst of all of this, our heads are spinning, trying to understand what this all means and with a distinctly different feeling than we have had before, given the lack of a plan. We reached out to the docs at Columbia and Hopkins to try to get their thoughts. (actually on our way to Hopkins right now).

This past Tuesday (two days ago), we sat down to talk to our onco about the PET scan, after having gotten the preview call on Saturday (didn’t I tell you we have the best oncologist in the world??).

The good news, no…great news, is that Scott did not light up like a Christmas tree. The lymph nodes in the chest and the nodule in the lung that had been identified before are quiet, and there was only one spot in the pancreas that lit up. (wait, didn’t we fry that already?)

The more challenging news? Scott’s liver did look like the bush outside our house…lots of twinkling there.

At this point, having exhausted the generally available options (and some not generally available options), we find ourselves definitively at the end of the paved road. We’ve got to make our own way from here and the path isn’t clear, so we’re going to have to figure out where to go. We have to continue with some type of systemic treatment, to treat what is a systemic disease, but we also need to find a way to deal with the mets in the liver, because…no liver, no Scott. So, the team is mobilizing, the docs are conferring and we’re going to figure out what is next. And quickly, too.

The options before us are as follows:

1. Clinical trial or other experimental treatment – Don’t know what yet, but working through the options. The options are narrowed because of Scott’s previous treatments, so we may just be looking at Phase 1 options. More to come…

2. Liver-directed therapy – With the cancer largely confined to the liver at this point, liver-directed therapy may be a viable option once again. There are several options, and we will work through which ones, if any, Scott is a good candidate for, and what risks may be palatable. Looking at evaluating SIR spheres first (radiation from the inside) and following up with liver-specific chemo – a chemo-embolization, without too much embolization. Again, this is way early, but these are some of the thoughts floating around.

Where will we end up? I have no idea – hopefully some combination of the two, that continues to treat him systemically, even on an experimental basis, while addressing the liver issues. I have to say, though, I am thankful to have the molecular profiling done in Arizona from the tissue samples taken during the ablation to try to guide the choices that are made now. It helps tremendously that we know more about what we are dealing with.

And that’s where things stand right now, today, this moment. We’ve got our meeting with the Hopkins doc tomorrow and then back to Charlotte to try to piece it all together. A pre-Christmas stent replacement is scheduled for Tuesday, so we don’t have to throw that madness into the mix.

Scott continues his effort to blaze trails for pancreatic cancer patients, especially the young ones. And we keep trying to figure out what piece(s) of the puzzle may work. Me, I’m just along for the ride, trying to hold it all together.

And you all, I hope you keep praying BIG!