Well, let it never be said that oncologists don't have a sense of humor. 5FU is the name of the mainstay chemotherapy drug for metastatic colon cancer. And if you need a second line of attack, I suppose they might offer WTF911.
Yesterday morning began early (for us) in order to get us down to Bellingham in the vicinity of 9 a.m. to meet with the oncologist in an information exchange session. Border one (P.R. to Canada) was a piece of cake, but at Peace Arch (Canada to rest of U.S.), we were selected for a random border crossing compliance check. They take the car and send us indoors into a large area with a bunch of other temporarily stopped motorists (the vast majority people of a different color than we are) and a large sign saying there are no public restrooms (and no information as to where such a facility might be found). The agent asks us a dozen or so questions about the contents of the car: any alcohol, food, weapons, giant quantities of cash, drugs, whatever, and ends the series with our being required to accept responsibility for anything that is in the car, despite the fact that the car has been out of my possession and out of my view for the past ten minutes. Amazingly, he asked specifically whether there were any scissors in the car. I said, 'yes; no, they're in my purse, not in the car,' and he said, 'oh, that's good.' So, you can take this information and wisely plan for your next trip across the border with respect to what goes where...sigh.
We get to the appointment on time. It's another one of these industrial new buildings that house lots of doctors belonging to the PeaceHealth Medical Group. Which means they're all affiliated in some way with St. Joseph Hospital.
The oncologist's office shows us he's went to med school at the University of Wisconsin-Madison, and did his hemology/oncology residence at Washington University in St. Louis. He finished that residency in 2003, so he's got 7 years of post-residency practice: long enough to know something and not so long that work has become routine. He appears, shakes hands with Ed, appears a little uncertain about what to do with me (I think there's something that's telling him that dealing with me is diverting his attention from Ed and that Ed is the one whom he needs to be relating to at the moment). We get past this moment. Ed talks because the doc starts out by asking him what he understands about all this right now. I mostly take notes throughout the maybe 45 minute discussion.
The doc is good in the context of us. It's possible that we as patient/family are playing to his strong suit (information, data, knowns and unknowns) and not to his weaker suit (emotional supportiveness). We are not (at least visibly) emotionally on edge, in need of encouragement, too fearful to process what he is saying. I would not call his presentation neutral; clearly, he thinks (not feels) based on research and on his own experiences that chemotherapy has a potential to be beneficial. But at no point did I feel that he was intentionally underplaying the negative aspects of chemotherapy. And there are plenty of them. Median survival of untreated metastatic colon cancer is six months, but almost everyone is now treated. I do not believe he specified any specific median survival with chemotherapy, but the literature and other docs we have talked to talk about 20-30 months being a reasonable expectation if the chemo has an effect. And it may not. In which case, you've undertaken the downside of chemo without getting any upside. That's one of the first of the difficult balances (or imbalances) we are confronting. Overall, people who do better, do better; people who are doing worse, do worse. At the moment, Ed is on the 'doing better' side with no symptoms, no impairment: just, unfortunately, 4 or 5 liver mets.
The chemo is pretty much given over 2 days every 2-3 weeks until either it shows no signs of either slowing or arresting the tumors' development or until you quit because you can't tolerate the side effects or because you are clearly entering the dying phase (and, of course, any or all of these could co-exist, so it isn't really an 'or' set). The chemotherapy is general, in the sense that it goes throughout the body and thus, if the tumor is responsive to it, discourages further metastatic growth in other organ systems.
How do they track response to the chemo? There is some humor in this, I think. The first is how you feel. Which is to say, if you have been through this regimen and you are still feeling good, you are doing very well indeed! Second, monthly blood tests to monitor things like the CEA levels. And, third, CT scans every 2-3 months to track tumor response.
The chemo side effects potentials are nausea (controllable, the doc says), diarrhea, rash, sensory neuropathy in the hands and feet (which can become chronic and thus disabling), but otherwise, you stop the chemo you lose the side effects. There are choices about having infusion versus a pill form of one of the drugs, which produces a different set of side effect conundrums (Shouldn't that be conundra?). Fatigue is a guaranteed outcome because the chemotherapy is intended to destroy quickly multiplying cells like cancer cells. But also like blood cells, and as those generations of blood cells are destroyed incidentally during each round of infusion, their loss begins to mount up in lower hemoglobin/hematocrit counts--i.e., anemia, and you just get to feeling tireder and tireder.
However, you can try it and quit when you don't want to have it anymore. My guess is that the doc's bias will be 'try it a little longer;' Ed's bias is more likely to be 'not worth the grief'. But we're not there yet. And if yesterday's conversation was any indication, I don't think the doc would push his views too hard if we get to that point. We talked with him about hospice.
Now, we have pages of drug information sheets to read, friends with experience and knowledge of their own to talk to, and time to think about it. They don't like to start the chemo until 4-6 weeks after surgery to make sure that they're not going to be undoing surgical healing that is yet ongoing. (Ed is now 3 weeks post-surgery.)
Here are the questions we are answering:
1. To have the chemotherapy at all? Ed is certainly leaning toward it at this time.
2. To begin with the Folfox or the Folfury regimens (both have 5FU and leucovorin, each has a different second drug + Avastin)?
3. To try the pill form rather than the infusion form of 5FU? Using the pill form means you take it for longer than 2 days in each cycle, but it also means that the infusion process (of the other drugs) is shorter relatively and you don't need a permanent vein access placed or to carry around a portable infusion pump for 36 hours.
4. When to begin?
