Round Three Reset

Our girl just wrapped up her third round of meetings with Nila. A lot has transpired over the course of the past couple of weeks, and perhaps it's a good time for a reset. (Warning...this is going to be a little long, and a little geeky. Add in the fact that I'm not a doctor, and things could get dicey.   Don't hold me to the technical details, please.)

Here goes:

Two weeks ago, Abi had a scan to determine how well her disease was responding to her treatments. Truth be told, we had all expected the impact to be pretty significant, and anticipated a substantial decrease in the amount of disease. Aggressive cancers tend to respond pretty well to the regimen that Abi is on. We had reason to be optimistic.

The scan indicated otherwise. Essentially, the amount of disease, overall, hadn't changed much. 

Our doctor's initial suggestion was that it was probably time to look to other treatment options. While stable is good, the body can generally only handle around six rounds of chemo. Also, the disease adapts to the cocktail over time. The treatment Abi was on simply didn't appear, at first blush, to be a a good long-term option.

And while all these scans, deliberations, consultations, and analyses were going on, Abi continued to feel better. I mentioned a few entries ago that one of the main questions we had was trying to understand the disconnect between how our girl felt, and what the scans indicated. 

Here are some of the possible explanations:

1. The cancer isn't acting as aggressive as we expected. It's important to understand the way the aggressiveness this particular disease is determined. Essentially, a pathologist took a bit of tissue from Abi's initial biopsy, and watched to see how quickly the cells proliferated. They proliferated very quickly. Any result over 20% on this test is considered high grade. Abi was at 50%. (If you're really interested in this stuff, google "KI-67 neuroendocrine tumors." You'll have plenty to read.) As I mentioned, these high grade diseases tend to feast on the cocktail, and tend to diminish rather quickly. Hers didn't. Why not? 

  • Perhaps this particular strand simply doesn't respond as well to the treatment as others like it. The truth is, we don't know a whole lot about neuroendocrine cancers, especially high grade ones. But we do know that each of them is different. (The color for neuroendocrine cancer is "zebra." That should tell you something.) They act and respond differently. Of course, that's both terrifying and encouraging at the same time. It's terrifying not to know exactly what we're dealing with, but it's also encouraging that this particular guest simply isn't acting like an aggressive cancer - at least not in terms of its response to treatment. It's acting more like a low grade disease.
  • Perhaps the bit of tissue the pathologist sampled wasn't representative of the remainder of the disease. Because cancer is believed to begin with a single cell that grows out of control, the KI-67 test assumes that any of the cancer cells we're battling will look pretty much the same as any other. Usually a fair assumption, but maybe not in this case. Dr. McG suggested that, while not likely, it's possible that the cells from the biopsy may not be completely representative, and it's possible that at least some of the disease may not be as aggressive as we believed.

2.  We didn't give the drugs enough time to do their work prior to taking a second scan

  • We accelerated Abi's second scan due to some "worrisome" back pain (which has since subsided), which suggested that the drug wasn't working as well as anticipated. So instead of rescanning at the end of week five of Abi's treatment as planned, we rescanned at the end of week four. It's possible that the treatment really didn't "kick in" until after the second scan. I should note that Abi's back pain was only beginning to subside when we did the second scan.
  • Really, this is the other side of the same coin as number one. That is, had the cancer responded to the treatment as aggressive cancers tend to respond, that week shouldn't have made much of a difference. The drugs should have had a noticeable affect, even in a week four scan. 

3. Some other explanation we haven't thought of. Again, there is so much we don't know, even about the "common" cancers, and neuroendocrine cancer research is relatively immature, in part, because it's so rare. Even with our great doctor, and his team of expert consultants at Sloan-Kettering and The James, we don't have perfect visibility into why Abi's guest is responding as it is. Our medical science simply isn't perfect in the best of circumstances. It's what it is.

Regardless of the medical explanation (all of which are a little dissatisfying), I remain convinced that the praying warriors of Abi's Army are having a real effect. 

So then, where does this leave us? We're playing the long game.

The current plan is to do two more rounds of meetings with Nila (the first of which we just completed), then take another picture to see where we stand. Based on what those images show, we'll either press on with two more treatments, or change direction.

Changing direction could take a number of different forms. We might shift to a chemo treatment that is better suited to less aggressive diseases. We are exploring a number of trials (two of which involve immunotherapy, and one of which is a pretty innovative way of doing targeted radiation on metastasized tumors), and we'll begin doing some tests to determine which of these may be the best option.

This fight is certainly not for the faint of heart. No surprise there. But Abi's attitude and determination are simply amazing. Our girl is feeling great, and is in the middle of a great visit with both Kylie and Lizzie (which has included: an afternoon at the dog park, a Taste Unlimited Picnic, manicures, pedicures, iced lattes, Monikers, dinner with Ashley and Ryan, ... Pretty amazing when you consider that she wrapped up round three on Friday.)

John and Abi's spirits are high.

Please keep them in your prayers, and thank you for your encouragement and kind words.

In love,


P.S. Abi's social media department (aka - Kylie) has started a Facebook page where members of her army can communicate more directly with each other, post photos, etc... Check it out.