I try not to overthink all this stuff, really, but it’s a fine line between wanting to know everything I can about my condition and the likelihood that I’m cured and what can be done to ensure that outcome, versus obsessing about it. Generally speaking, I feel like I’ve done a very good job of managing this. I don’t feel or live as though I have a Sword of Damocles hanging over my head. I don’t think about cancer — consciously — all that much, all things considered. I hear about people who approach upcoming tests with dread and I don’t really have that feeling. I have 10 minutes of eagerness reading through results on the day I’m to meet with BB, but other than that, I’ve got it under control most if not all of the time. And part of the reason I don’t have that dread, I think, is because the tests are so frequent and I am sufficiently on top of things that the “unknown” part is kept pretty well managed.
For this reason, I’m permitting myself to indulge in some “what if” thinking at the moment, based on last week’s test results.
At the end of the day, if I have a thyroid problem, that’s controllable with pills. It might even explain some of the fatigue and GI issues.
Similarly, I’m not really worried about the presence of “small lymphocyte aggregates” in my marrow, because if it was something serious, they’d have told me instead of telling me not to worry about it. While I want to learn more about this, the little research I’ve done indicates that it’s present in a benign form in much of the population. It’s connected to lymphoma but I think it’s correlation without causality and if I had other lymphoma markers, they’d be evident.
What I *am* worried about is the connection between the unresolved lesions in my bones, and the mysterious reappearance of the monoclonal signature in my blood under sensitive tests (normal tests still show that it’s negative).
When they perform the fine needle aspirates of my spine and hip, they will pull marrow (assuming the sites are accessible) and analyze it for the presence of myeloma. They last did this a year ago during the “great MYC gene scare of 2012” and the one site they were able to access at that time was the hip, and it was negative.
They did not, at that time, have the ability to run an MRD test — the Minimal Residual Disease test there is dozens of times more accurate (I seem to think 60X) than a standard bone marrow analysis. I haven’t had the chance to speak with them about this but it’s certainly possible that they may want to pull the marrow from there to run MRD tests on it.
The one marrow site they did access — my hip, not where the lesion was but in one of the sites where the marrow is most prominent in the body — was negative for MRD, and that’s great. If I was MRD negative throughout the body, I’d be considered cured. The issue is that it’s from one site, and marrow could be clean in one place and not-so-clean in another. BB told me he is working on developing a test that would perform MRD on the blood, rather than the marrow, which would tell all.
But we don’t have that yet, so instead I will be pin-cushioned here once we get it scheduled.
The best case: the former lesion sites are all accessible, each is MRD negative, the marker in the blood is a sign of marrow recovery rather than returning disease, and BB tells me I’m cured and can go off meds.
The worst case: one or more lesion sites show residual disease, the marker in the blood is a sign of its return, and I need to determine whether or not to undergo aggressive chemo to keep on the potential cure path — or accept that relapse is inevitable and join folks who are waiting for more treatments to come out of big pharma. After all, if I still have disease, it’s resistant to Velcade at a minimum.
The likely case: not all lesion sites are accessible, the one or two that are are negative for MRD, we chalk the blood up to marrow recovery but deep down inside neither of us is all that confident in it, and I stay on Velcade and continue to wait out resolution of these lesions.
More news to come as events merit. Be well, all.