So I'm going to have to go see the dentist, I guess. It's not that I have any tooth pain, though the gums are receding a bit--it's just that a good cleaning would be nice, as long as the hygienist doesn't get overly aggressive with the floss. I remember describing a session ~20 years ago as having been "flossed within an inch of my life" and that might even be almost true now if it happened again. Also dentists seem to hate Zometa (a bisphosphonate that helps keep my bones from eroding) because it can cause horrible jaw necrosis if too much is given for too long. So I will have some explaining to do, but I would like to get the teeth cleaned.
The point is that even last year, going to the dentist seemed silly and pointless. I've been certain that, whatever their flaws, my teeth were going to outlast the rest of me. You could argue that maybe this reflects my bias as a former mortuary site archaeologist (trust me, really they do keep very well, for thousands of years or more, depending on geological conditions). In fact, everything except the cancer faded into the background, especially anything health-related.
My heart, for example. Or my arteries and their contents. It seems that my cholesterol (specifically low-density lipoprotein, or LDL) has been creeping upwards in the last few years. Last year I would not have given it a second thought. This year, with things looking good, it's worth at least a little bit of thought. And there's an interesting complication with myeloma: it seems that the tumor cells themselves consume LDL, so that people with advanced MM tend to have very low LDL, and low LDL is correlated with worse survival (if you have MM). So it might be that my rising LDL is another sign of the myeloma being under control. It's probably not only that, though: high LDL could kill me all by itself.
I raised the question of taking a statin with my hematologist a couple of weeks ago, because I've read a couple of papers indicating that statins reduce the risk of death in myeloma patients, results that reinforce the idea that the tumors are competing for LDL. In fact, 10 years ago there was a lot of research built around the idea of using statins to treat myeloma--which mostly dried up when other drugs such as thalidomide and proteasome inhibitors emerged as game-changing therapies.
So, the question is simple: should I add a statin to the already-impressive list of medications? The answer is not so simple. The U.S. Preventive Services Task Force (USPTF) guidelines say that I should have a 10% chance of dying from heart disease or stroke in the next 10 years in order to make low-dose statins worth bothering with. They calculate my risk at 5.5%, not taking the myeloma into account, of course. So really the absolute risk for me of dying from heart disease or stroke in the next 10 years is much smaller than 5.5% (because the risk of dying from myeloma is so large [~ 100%] , the risk of dying from anything else has to shrink). But will the statins reduce my risk of dying of myeloma in the next 10 years? Probably not nearly as much as just keeping up with the many new myeloma drugs that have become available in the last few years.
But I will try to work at keeping the LDL down with diet and exercise, at least. Apparently the tumors like cheeseburgers and fries. I don't eat a lot of cheeseburgers, but maybe I could cut down on the fries.
Friday, April 27, 2018
Friday, April 13, 2018
Rational
Just back from a follow-up visit to Mayo. It's indicative of the moment that we expected so little, and felt so beset on other fronts, that Liz and I decided that this might as well be a solo visit--fly straight to Rochester, do the medical stuff, and come home the next day. And do that for the first time without Liz alongside. The strangely prolonged winter provided additional motivation, since we didn't want to drive while snow was still falling in Kentucky, never mind what might be going on in Minnesota. It hardly seemed to matter that I'd rescheduled the visit from February to April--the difference in weather was subtle, at best.
Typical of a Mayo visit, I arrive the evening before because the first appointment is early the next day. It's still light outside, and I find my hotel is a bit farther from the clinic than I had intended. But the weather seems OK, and I take an early evening walk with an eye toward walking the next morning. It's good--mid-30's and some of the snow is melting . . . never mind that this is April, I can deal with this.
My first "appointment" is at 6:45 AM. It's really just to stand in line for blood draw, but the line gets long as the morning progresses, so I don't want to be too late. The hotel offers a shuttle at 6:00, but that's a little early in my view, given that I'd be arriving at 6:10 at the latest. Also there is snow falling and winds around 30-40 mph. Walking is out, I take an Uber.
I have a couple of hours to kill between phlebotomy and the doctor visit. One interesting feature of the Rochester campus is the extensive "subway" system connecting many downtown buildings with the clinic. I discover several new subterranean passageways, many with shopping opportunities (although few of these are open at 7:15 AM). It turns out that it is possible to walk from your fasting LDL blood draw straight to Dunkin' Donuts without going outside into the horrible maelstrom (but you can walk!). I wouldn't say it was easy, as it took me 3 years to figure this out. After breakfast (not from DD), I find a place where I can buy a new belt for less than it would cost me (via Uber) to recover the belt I left behind in the hotel.
One of the best things about Mayo is that your lab results are posted in real time as they are read. By the time I'm eating breakfast I can review my cell counts (all fine, platelets and red cells still a little low, but just where they've been parked for the last two years), and basic blood chemistry (totally unremarkable).
By the time I'm in the exam room, the number I've been waiting for shows up. It's the ratio of kappa/lambda protein in my blood. It's been trending downward since my stem cell transplants, from a high in the 100's when I was first diagnosed, to 2.6 a couple of weeks ago. The ideal is 1.0, because for patients like me the kappa protein is the one produced by the tumors, while the lambda protein is produced by normal plasma cells. There are also presumably normal plasma cells making kappa, in about the same proportion as the the lambda-generating cells, so if the ratio is close to 1.0, the tumors are effectively silent (not gone, just not causing any major mischief).
Amazingly, the ratio is 1.1. My doc comes in moments later, and I have the rare experience of telling her the good news. It's a nice moment, big smiles, let's keep doing what we're doing. The Wylie Coyote image (off the cliff, not yet falling) remains, but the impending fall seems farther off now.
For you data fans out there (anybody?), here's a chart of the kappa and lambda numbers post-transplant.
Something's funny here. The kappa number keeps falling, as we want it to. The lambda number has been very stable, and lower than normal, the whole time. Because the chemotherapy, in part, depresses lymphocytes in general, it's not surprising that the lambda number, representing the activity of normal plasma cells, is lower than the ideal. In the last two weeks, it seems, the lambda protein has doubled, while the kappa has dropped a bit, so my ratio of 2.6 from March 15 has become 1.1 on April 6. Is this real?
Probably not. Every measurement carries some unknown amount of error, and the most unusual- looking measurements are much more likely to be in error than are those that fall in line with other observations. We'll see in a few weeks, but I'll bet the next measurement will put the lambda back down a few notches, putting the ratio back up around 2 or so. In the end, it probably doesn't matter much--the news is still good.
Typical of a Mayo visit, I arrive the evening before because the first appointment is early the next day. It's still light outside, and I find my hotel is a bit farther from the clinic than I had intended. But the weather seems OK, and I take an early evening walk with an eye toward walking the next morning. It's good--mid-30's and some of the snow is melting . . . never mind that this is April, I can deal with this.
My first "appointment" is at 6:45 AM. It's really just to stand in line for blood draw, but the line gets long as the morning progresses, so I don't want to be too late. The hotel offers a shuttle at 6:00, but that's a little early in my view, given that I'd be arriving at 6:10 at the latest. Also there is snow falling and winds around 30-40 mph. Walking is out, I take an Uber.
I have a couple of hours to kill between phlebotomy and the doctor visit. One interesting feature of the Rochester campus is the extensive "subway" system connecting many downtown buildings with the clinic. I discover several new subterranean passageways, many with shopping opportunities (although few of these are open at 7:15 AM). It turns out that it is possible to walk from your fasting LDL blood draw straight to Dunkin' Donuts without going outside into the horrible maelstrom (but you can walk!). I wouldn't say it was easy, as it took me 3 years to figure this out. After breakfast (not from DD), I find a place where I can buy a new belt for less than it would cost me (via Uber) to recover the belt I left behind in the hotel.
One of the best things about Mayo is that your lab results are posted in real time as they are read. By the time I'm eating breakfast I can review my cell counts (all fine, platelets and red cells still a little low, but just where they've been parked for the last two years), and basic blood chemistry (totally unremarkable).
By the time I'm in the exam room, the number I've been waiting for shows up. It's the ratio of kappa/lambda protein in my blood. It's been trending downward since my stem cell transplants, from a high in the 100's when I was first diagnosed, to 2.6 a couple of weeks ago. The ideal is 1.0, because for patients like me the kappa protein is the one produced by the tumors, while the lambda protein is produced by normal plasma cells. There are also presumably normal plasma cells making kappa, in about the same proportion as the the lambda-generating cells, so if the ratio is close to 1.0, the tumors are effectively silent (not gone, just not causing any major mischief).
Amazingly, the ratio is 1.1. My doc comes in moments later, and I have the rare experience of telling her the good news. It's a nice moment, big smiles, let's keep doing what we're doing. The Wylie Coyote image (off the cliff, not yet falling) remains, but the impending fall seems farther off now.
For you data fans out there (anybody?), here's a chart of the kappa and lambda numbers post-transplant.
Something's funny here. The kappa number keeps falling, as we want it to. The lambda number has been very stable, and lower than normal, the whole time. Because the chemotherapy, in part, depresses lymphocytes in general, it's not surprising that the lambda number, representing the activity of normal plasma cells, is lower than the ideal. In the last two weeks, it seems, the lambda protein has doubled, while the kappa has dropped a bit, so my ratio of 2.6 from March 15 has become 1.1 on April 6. Is this real?
Probably not. Every measurement carries some unknown amount of error, and the most unusual- looking measurements are much more likely to be in error than are those that fall in line with other observations. We'll see in a few weeks, but I'll bet the next measurement will put the lambda back down a few notches, putting the ratio back up around 2 or so. In the end, it probably doesn't matter much--the news is still good.
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