Ed has been getting chemotherapy for most of the past 4.5 years. There are 3 major kinds of chemo (with some add-ons) for colon cancer: 5FU/xeloda (which is a pill form of 5fu), oxalyplatin (which contains platinum, a dangerous metal), and irinatecan. He's had them all. All have side effects, and he's had some of them, but the one drug he most didn't like was xeloda which has something called 'foot and mouth disease' (essentially, a very itchy allergy and skin rash). He did not survive very long on the Xeloda regimen.
By contrast, he's had many, many cycles of Oxalyplatin. Some neuropathy, but that's about all other than the attack on the white blood cells, which they all engage in. And, most patients don't get through more than about 8 cycles of it before they are toxed out. It has been effective in regard to tumor reduction for Ed; moreso than Irinatecan, which also has had few side effects for him.
Last fall, when he returned to the oxalyplatin regimen after 6 months on Irinatecan, the first time he developed a mild allergic reaction (again, itchy palms) which lasted only briefly. Then, 3 weeks ago, it happened again. The problem is, once it's determined that you are potentially allergic, they're pretty unwilling to give it further because anaphylactic shock is also a possible reaction. So, we've (mostly Ed, really) has spent this intervening time thinking about what to do next. There is no standard to lean on, not least because he has survived so long that there is not really any research that would apply to him. Treatment of some kind seems to be better than no treatment in terms of length of survival, but even that might not be the case if the tumor seems relatively indolent (though relentless).
Any way, he could simply do nothing but get regular CEA blood tests to make sure this somewhat unreliable marker doesn't start rising dramatically. Or he could have just 5FU with or without add-ons (the main add-on is Avastin, which is extraordinarily expensive and the research does not show a big impact considering the cost). Or go back to the Irinatecan regimen which didn't seem to have as big an anti-tumor effect.
So, after talking it over with the doc today, he decided to go the 5FU route with no add-ons and see how that would work in terms of managing tumor growth. Another CT scan in 3-4 months and CEA readings along the way. Every three weeks for the on-site infusion, which now lasts only about 2 hours instead of 5.
I note all this here because it is something of a turning point when one form of chemo is no longer available. But there are yet 2 other forms available. So, it's not that big a change, although perhaps so psychologically in the sense that Ed and the doc both feel/think that the Oxalyplatin has been the most effective so far of the three available regimens, and now it's not available.
But he is pretty much the same as always as far as we can tell. One problem with surviving cancer for 4.5 years when you are pretty old already is that you get even older and it's not possible to separate general aging from general cancer. We try to use me as a control. Ed naps more than he used to, but then so do I. He's better at remembering words than I am, so if one of us is sinking into dementia, it's not him. Otherwise, we seem both to be keeping up, keeping on. And we've raised $320,000 for the new library, with hopes of getting the remaining need (another $200,000) from one/several foundations during 2014. After that, we have to raise some money for the local food bank, and after that, we get out of the fund raising business, I swear.
A good spring and summer to you all!