BIG things ahead

This showed up on our doorstep last weekend. Not sure what little elf may have left it, but I have my suspicions…

In any event, it’s fantastic. Thank you mysterious little elf!

Lots of stuff has been going on around here…I’ll try to catch you up. As you know, the end of December saw another switch in Scott’s chemo, from Abraxane to Tarceva. It was explained to us that the point of taking Tarceva was to maintain things, in other words, it wouldn’t shrink the tumors, but not let them grow, either, while we researched the next steps. If it worked, it would be a pause button, of sorts.

Since late December we’ve been waiting on insurance approval to proceed with the SIR spheres, the little radioactive particles that will treat Scott’s liver from the inside. Fortunately, the approval finally came through last week…after the Level 2 appeal. (I could get on a soapbox about availability of health care here, but I’ll hold for now…)

As soon as the approval came through, we were ready to proceed and this past Tuesday, Scott had a procedure to map his liver. The liver mapping is a dry run for the SIR spheres. They go in through the femoral artery (the big one in your groin) with a scope (note – this was actually an angiogram, I thought “scope” was a bit easier to understand), take a look at the vasculature, close off any vessels that might let the particles out to roam around the rest of your body (where you don’t want them) and cause havoc elsewhere, and then scan to make sure that everything is working like it should. It was a long day, but we’re glad to get it behind us so we could take the next step. This coming Tuesday, the first dose of the SIR spheres will be administered. (There’s some question about treating the whole liver at once versus just one lobe at a time…we’ll leave those decisions to the docs to work out.) So that’s where that is.

While all that has been going on, we’ve also been trying to figure out the next options for systemic treatment (ie. chemo). The problem is, Scott has had all standard (and some not so standard) treatments for pancreatic cancer. Seriously…ALL. Thus, our foray into the world of clinical trials has begun. Since Scott is young and people who are young do not normally get PC, we are targeting a class of drugs called PARP inhibitors. In short, for Scott to have PC, chances are that something has gone wrong with his DNA and the PARP inhibitors attack the cancer in a different way that addresses this. (More on this as we move down this road.) So, our search for the right trial has begun. So far, all the trials we’ve identified with the agent we are targeting are Phase 1, which means there isn’t a lot of info about the drugs and they are studying them to see how much they can give of a certain combo without experiencing bad side effects. (More on that too, I’m sure.). We’re casting a wide net, so we may see some of you soon. (Boston and Hershey peeps -you’re on notice). The trials all have an exclusion period from last treatment, so we’re trying to get the liver stuff done while we are working out the next chemo stuff. Will keep you posted as things progress.

…which now brings me to the stomach. Sigh…

Scott has had trouble with his stomach for some time now. He has a duodenal ulcer that just has not healed, most likely from the radiation treatments last Spring, and has significantly narrowed the duodenum itself. We’ve tried everything to no avail, and it has been a challenge to keep Scott comfortable when eating. Along with that, we learned that his stomach is now emptying really slowly (due to the narrowing, we think). All of this adds up to an uncomfortable Scott. Long term, if we can’t get things under control, we have been told that Scott may need a duodenal bypass (separate stomach from small intestines and hook up stomach directly to jejunum, thus bypassing damaged part). Of course, that’s not high on our list, but at least there are options if we can’t get the ulcer under control in other ways. Right now, Scott’s been put on a low residue diet and can’t eat raw fruits or veggies. (Yikes!) Lots of white stuff – no whole grains, no seeds, no fiber. Honestly, we’re just trying to keep calories going into him to ensure his weight stays stable, especially as we get ready to make his liver unhappy again.

Well, I know I’ve thrown a lot at you. Overall, though, Scott is doing okay. Actually, better than okay. The break from traditional chemo has helped him feel better. He’s got more energy and is making a concerted effort to walk in the park every day. He still gets tired easily, but is trying to make a few more appearances while this phase holds. He got to see Cole’s class performance of the Second Continental Congress (Cole was Samuel Adams) and he even made it through the boys’ chess tournament today. And with that, we’re ready to enter the next phase. Here we go.

And, as the sign says…keep praying BIG!

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