Results

Karen had thought about pulling an all nighter to get some projects done that she had been interested in doing, but we only stayed up a little later than normal. This turned out to be a decent decision because her treatments have been canceled and she is getting another week off. The scans have shown growth of several millimeters for many of the implants, along with new implants that weren't seen before. This has been passed off as "no significant changes" or sometimes even as "stable" in the past, but it's enough to tell the researchers the treatments likely aren't working. There are some cases where inflammation due to an immune response makes it appear as if the cancer were growing, but they don't feel that's the case here.

Karen asked and she is still the only person to undertake this clinical trial at Mayo. But even if others were on it I don't know if they would have been able to tell us if it were working for anyone else. The oncologist says going back on FOLFIRI is an option, but Karen feels strongly opposed to that idea. The oncologist believes the cancer was growing more slowly on while Karen was on traditional chemotherapy. I suppose there's even a chance things were worse because we were on this trial - a possibility I had never considered.

Directly afterwards I asked Karen how she felt, and she said fine, "but maybe it hasn't sunk in yet." Which is what's happened more as the day progressed. By evening she had become quite upset. Not to the point of tears, but to the point where it's certainly affecting her mood. She talked about it a little, and that helped. But what seemed to help the most was getting back to work on her projects. I guess the distraction is good.

There are other clinical trials we may be interested in. Right now the type of chemotherapy administered to cancer patients is based on the origin of the cancer. So Karen gets chemotherapy treatments that have historically performed best against colon cancer. This is FOLFOX and FOLFIRI. However, there are studies underway to use genetic testing on the cancer to catalog the gene mutations and choose a chemotherapy based on the specific genetics of the cancer. There is good reason to believe this is the better approach, but there still isn't a lot of data on it. One of the clinical trials Karen might qualify for is this sort of treatment. They'd do a fine-needle aspiration on one of the nodules suspected to be cancer, and map out it's dna. Based on the finding we'd try a specific chemotherapy treatment that's expected to perform better on Karen's particular variant of cancer.

Opposite Week

Last time Karen got a week off she had a good amount of energy and was actually quite active. This time around was nearly the opposite; she slept a lot and felt off most of the week. She even vomited Thursday. She managed to go two cycles of the clinical trial without puking once and now it happens on her week off. We figure she must have been fighting something all week because she didn't start to feel better until late Friday.

As I mentioned before, the CAT scan was Friday, but we won't be able to find out anything about the results until we see the oncologist Monday morning. I know we shouldn't expect much, this being a stage 1 trial, on the other hand it's hard not to get your hopes up. We talked about it briefly, and she says she doesn't have expectations one way or the other, nonetheless I'm worried she'll be overly disappointed if the scan doesn't show improvement. She doesn't seem to be nervous or thinking about it much, but she's also been keeping herself busy with things she wasn't able to do earlier in the week.

A Short Week

As I mentioned before, we would be getting Labor day off. This means Karen's first injection this week wouldn't be until Wednesday. Despite the side effects diminishing with each injection, when Karen started the second cycle her first injection was nearly as bad as the very first. So I was a bit concerned that with Monday off - making it 5 days between injections - that Wednesday's injection would be tough on her as well. Unfortunately, that did turn out to be the case. Which also meant Friday's injection was a bit rough as well. And some of the symptoms, particularly the painful sensations from air blowing over her skin, seems to have come back Sunday evening. Even on Monday she seemed overly fatigued. Karen's bloodwork hasn't shown the same drop in white blood cell count we saw the first cycle. This is almost certainly due to the extra day off, and quite possibly tied to the severity of her symptoms.

We have bloodwork and a CAT scan scheduled for Friday, but we won't find out if the injections have been working until Monday. Since it's easier to cancel an appointment than to try and schedule one at the last minute, they've already got Karen scheduled for her third cycle of injections. While on chemotherapy we never got scheduled more than a week ahead of time, but we seem to be scheduled a whole month ahead while on clinical trials. I assume this is to make sure they don't miss a treatment due to scheduling, but it feels strange to click on your appointment list and see it scheduled out all the way through October 7th.

The Second Second Week

This was the second week of the Karen's second cycle in the clinical trial. Much like the previous week, this week went very similar to that of the first cycle. Most of the symptoms seem to be slightly less severe than the first time around. For example, she still gets headaches but they don't seem to be triggering migraines, so she's better able to use her phone for texts. However, it turns out she's even more sleepy and fatigued this cycle. Wednesday's injection was the worst in regards to this. She went to bed around her usual time, maybe a bit early, but slept for around 20 hours. Then, after being up a few hours, slept again until Friday morning. I was starting to get quite concerned, but Friday's injection was much more typical.

At the end of the first week we got to talk to our research contact and one of the things that came up was the early appointments. He said there's no problem moving them further into the day. We thought noon would make things easier for us and they adjusted all of our future appointments accordingly. We were quite happy with the change and thought it would make getting to the appointments much easier on us. And it did, but it had one unintended side effect. During the first cycle, Karen would be fine the evening before her next injection, but now, with her injections happening 3 to 4 hours later in the day, she isn't recovering completely until bedtime. I'm not sure if the extra sleeping is related this schedule change, or if it's just compounding the issue. Karen says that for now she still prefers it later in the day - and compared to those 6:30am appointments across town, who wouldn't? - but maybe we'll aim for something in between for the next cycle.