We're back from a follow-up visit to Mayo, with little news to report, which is a good thing--the monsters, while still present, have not yet reawakened. I am feeling good, and have enough hair to have resumed using shampoo. That I take pleasure in this surprises me, but it is what it is. The hair is surprisingly helpful as an insulator, and I am gradually finding myself less in need of extra layers of insulation even though the temperature keeps dropping.
I'm now on long term disability, trying to figure out how to keep being useful and productive, while also trying to figure out how to balance my desire to keep being productive against my wish to enjoy as much as possible of my limited remaining time on earth.
The main point of the visit to Rochester was to plan the post-transplant "consolidation" chemotherapy.
Forgive me for getting slightly technical here, but just in case anyone else can ever use the information, I do want to record the plan we arrived at and the reasoning. A consistent theme from clinical trials is that patients like me with 17p deletions respond better to the class of drugs called proteasome inhibitors (Velcade, Kyprolis, Ninlaro) than to other classes of drugs used to treat myeloma. So we want one of those, along with dexamethasone, which is both dirt cheap and the best single drug for knocking down the category of cells (lymphocytes) from which the tumors originate. The effect is much broader than you might hope for, and the side effects are unpleasant, but umpteen clinical trials have shown dexamethasone to be better than any known alternative. The last drug in the regimen is called lenolinamide, which goes by the brand name Revlimid. It's a close relative of thalidomide, the drug that got famous for causing horrific birth defects in the 1950s. Its action as an anticancer agent is not totally clear, but it has a great track record in myeloma, and has been responsible for a major improvement in survival. However, it's not as clear that it works well for patients like me.
Last year, a handful of new myeloma drugs were approved by the FDA. Among them were one proteasome inhibitor (Ninlaro), and two monoclonal antibodies (Darzalex and Empliciti). Because they're newly approved, and patented, and this is the U.S.A., they are all wildly expensive. Revlimid, Kyprolis, and Velcade are also wildly expensive, by which I mean a year's supply of any of those drugs will run between $100,000 and $300,000 per year, if your insurance company won't cover them.
And there's one more consideration. Revlimid and dexamethasone are tablets. All you have to do is swallow them. Almost all the rest are delivered by infusion, which means that you go to your local hematology/oncology clinic and hang out for an hour or two while an IV is delivered into the increasingly less willing veins in one or the other arm. If you've had any recent contact with your local health care providers, you will realize that "an hour or two" in the infusion room means a minimum of three hours of real time. Velcade can be delivered by subutaneous injection, which takes less time, but still requires showing up for an hour or two, and leaves ugly red welts all over your belly.
Darzalex may well be a wonder drug, and I definitely expect to make use of it. But it is not a cure, so it makes sense to put off its use until what I'm doing doesn't work anymore. Meanwhile, Ninlaro is a proteasome inhibitor, to which I'm likely to respond well, but I can take it orally, so I will not be tied to an infusion center for hours on end. So we're going with Ninlaro/Revlimid/dexamethasone. It's not a cure, but then again nothing is. And we'll probably need to change it out after a year or so.
Apologies to all for whom that was too much. May we all survive the next four years.
Wednesday, November 23, 2016
Thursday, November 3, 2016
Benchmarks
There hasn't been much to report since we've returned to Louisville, and I have dutifully failed to report. Liz and I have been taking care of business old and new, between filing insurance claims, re-establishing our relationship with the US Postal Service, obsessively checking presidential poll aggregators, and so forth.
The weather has been spectacularly good here, and I became strangely obsessed with rehabbing some outdoor furniture we brought here from Salt Lake that had been sadly ignored. It got a few days of attention, and looks a little better, anyway. I've been working on the bike and feeling better, although I do need to lie down for a while after a ride.
And there has been baseball. I grew up a Phillies fan (it used to be a congenital condition, as no one with any sense would adopt them as a favorite), back when they were still working off the 77 year-long interval before winning their first World Series. When I was in grad school, living in Chicago, it was fun to play hooky on the occasional summer afternoon and take the el down to Wrigley. This was a few years before they put lights in, so all the games were afternoon games. The bleacher seats were $2, the beer was cheaper than that, and a few of my heroes from the 1980 Phillies had been traded to the Cubs. I'll spare you any further details, but it was easy to fall in love with Cubs, especially in 1984. Never mind what happened then. Or that other thing.
So I do have to say: Cubs win! Cubs win! And attribute it to Jack Brickhouse, although it may go back further. He was gone by '84, but a bit easier to take than Harry Caray while I was trying to comprehend the finer points of principal components analysis.
I'm thinking that I will make it a goal to be alive for the next time the Cubs win the World Series. On second thought, that might be setting the bar a little low, since those guys could do again next year. Maybe the Phillies, then. That's definitely a reach.
The weather has been spectacularly good here, and I became strangely obsessed with rehabbing some outdoor furniture we brought here from Salt Lake that had been sadly ignored. It got a few days of attention, and looks a little better, anyway. I've been working on the bike and feeling better, although I do need to lie down for a while after a ride.
And there has been baseball. I grew up a Phillies fan (it used to be a congenital condition, as no one with any sense would adopt them as a favorite), back when they were still working off the 77 year-long interval before winning their first World Series. When I was in grad school, living in Chicago, it was fun to play hooky on the occasional summer afternoon and take the el down to Wrigley. This was a few years before they put lights in, so all the games were afternoon games. The bleacher seats were $2, the beer was cheaper than that, and a few of my heroes from the 1980 Phillies had been traded to the Cubs. I'll spare you any further details, but it was easy to fall in love with Cubs, especially in 1984. Never mind what happened then. Or that other thing.
So I do have to say: Cubs win! Cubs win! And attribute it to Jack Brickhouse, although it may go back further. He was gone by '84, but a bit easier to take than Harry Caray while I was trying to comprehend the finer points of principal components analysis.
I'm thinking that I will make it a goal to be alive for the next time the Cubs win the World Series. On second thought, that might be setting the bar a little low, since those guys could do again next year. Maybe the Phillies, then. That's definitely a reach.
Wednesday, October 5, 2016
Wrap Up
Today was the exit interview, where we talked about the schedule going forward, and interpretation of the latest numbers for assessing how well I responded to treatment. The plan is to begin maintenance/consolidation chemotherapy, similar to the induction chemo I was doing pre-transplant, at about day 60, which will be mid-November. Also at that time I will start on my "childhood" immunizations, which I need because my immune system has undergone what amounts to a "factory reset."
In terms of how I am doing right now, I basically sailed through both transplants without a single really bad day. I'm grateful for that, but am more focused on what's left of the disease at this point. The truth is it's a little hard to say--which is a good thing.
The disease is caused by proliferation of a single lineage of plasma cells. Plasma cells are responsible for making components of antibodies--each lineage just makes one part of the molecule--so you can assess how much disease there is by looking at the ratio of the component that the tumor cells are making to the other (normal) components. When people are first diagnosed with myeloma, the ratio is often 100 to 1 or higher. After treatment, a ratio of 1.0 should mean no measurable disease. Some people actually achieve this, although I haven't yet. One problem with ratios is that when the numbers are small, ratios are unreliable--so measuring how much disease is left gets harder as the amount of disease goes down.
Responses to treatment for myeloma get translated into a set of categories: complete response, very good partial response, partial response, stable disease, progressive disease. They're fairly broad categories, but they are clinically useful. My response, right now, would be classified as "partial response," falling just shy of a "very good partial response." I think of it as "pretty good partial response" although obviously that's not an official category. So the target for post-transplant chemo is going to be that small amount of residual disease, and the new drugs that are available make that seem like a reasonable hope.
In terms of how I am doing right now, I basically sailed through both transplants without a single really bad day. I'm grateful for that, but am more focused on what's left of the disease at this point. The truth is it's a little hard to say--which is a good thing.
The disease is caused by proliferation of a single lineage of plasma cells. Plasma cells are responsible for making components of antibodies--each lineage just makes one part of the molecule--so you can assess how much disease there is by looking at the ratio of the component that the tumor cells are making to the other (normal) components. When people are first diagnosed with myeloma, the ratio is often 100 to 1 or higher. After treatment, a ratio of 1.0 should mean no measurable disease. Some people actually achieve this, although I haven't yet. One problem with ratios is that when the numbers are small, ratios are unreliable--so measuring how much disease is left gets harder as the amount of disease goes down.
Responses to treatment for myeloma get translated into a set of categories: complete response, very good partial response, partial response, stable disease, progressive disease. They're fairly broad categories, but they are clinically useful. My response, right now, would be classified as "partial response," falling just shy of a "very good partial response." I think of it as "pretty good partial response" although obviously that's not an official category. So the target for post-transplant chemo is going to be that small amount of residual disease, and the new drugs that are available make that seem like a reasonable hope.
Friday, September 30, 2016
Home Stretch
I've been owing a post for a few days now. There's a lot to report, but here are the headlines:
1. The possible infection was real. It turned out that the knee was fine, but the inspection of the central line revealed a couple of tender spots that led to cultures being taken from both tubes and a separate culture from my blood (straight from a vein, no tubes). The first two cultures were positive, but the last was not, meaning that the central line itself was the reservoir of the infection and it had not spread to my blood. So I've been on twice-a-day infusions of vancomycin all week, and yesterday they decided to pull the central line. That's a great relief to me, and everything feels better already. The downside is that all the rest of my blood draws and infusions will require sticking a needle in a vein. Believe me, I am totally accustomed to that, so it's no big deal.
2. The other news is all good. I have more than enough platelets and leukocytes to go home, and have an exit interview scheduled for Tuesday. The erythrocytes look like they are starting to come back a little now, as well. So we should be pulling out either Tuesday or Wednesday.
Next up: an assessment of how well I've responded to the transplant, and considerations about where we go from here.
1. The possible infection was real. It turned out that the knee was fine, but the inspection of the central line revealed a couple of tender spots that led to cultures being taken from both tubes and a separate culture from my blood (straight from a vein, no tubes). The first two cultures were positive, but the last was not, meaning that the central line itself was the reservoir of the infection and it had not spread to my blood. So I've been on twice-a-day infusions of vancomycin all week, and yesterday they decided to pull the central line. That's a great relief to me, and everything feels better already. The downside is that all the rest of my blood draws and infusions will require sticking a needle in a vein. Believe me, I am totally accustomed to that, so it's no big deal.
2. The other news is all good. I have more than enough platelets and leukocytes to go home, and have an exit interview scheduled for Tuesday. The erythrocytes look like they are starting to come back a little now, as well. So we should be pulling out either Tuesday or Wednesday.
Next up: an assessment of how well I've responded to the transplant, and considerations about where we go from here.
Tuesday, September 27, 2016
+11
Last time around, day 11 was the day my hair started coming out. What hair I've still got is hanging on today, but I don't think it's all going to survive the next few days--unless it's more a question of selection than attrition. We shall see. Visually it won't make much difference, since my current crop is short, sparse, and predominately white.
The white cell (leukocyte) counts rebounded quickly from the nadir (<100, 200, 200, 500, 700, 800 million/L on successive days), a couple of days ahead of last time, and after a deeper drop the platelet count has gone up on its own since yesterday (5, 13, 18 billion/L, though the 13 was aided by a transfusion on Sunday). So I am already over the line for leukocytes, and probably have only another two or three days before the platelets are at acceptable levels.
The red cells, as before, are lagging, and today I posted a lower hemoglobin (9 g/dL) than ever before. As long as this number doesn't drop much further, a little anemia won't keep me from being released. The new thing this week has been a little scare about infections (the coffee table bruise took on some extra redness that concerned the docs), so I have been doing two a day infusions of vancomycin while we wait for the blood cultures to come back. I am convinced there is no infection and that the bruising was just weird because of the combination of no platelets and a vintage de Sade coffee table. Also my clumsiness. As a bonus, though, I got to watch most of the presidential debate hooked up to an IV drip, which provides a feeling of distance. If we'd only thought to watch with the sound off it would have been perfect.
The white cell (leukocyte) counts rebounded quickly from the nadir (<100, 200, 200, 500, 700, 800 million/L on successive days), a couple of days ahead of last time, and after a deeper drop the platelet count has gone up on its own since yesterday (5, 13, 18 billion/L, though the 13 was aided by a transfusion on Sunday). So I am already over the line for leukocytes, and probably have only another two or three days before the platelets are at acceptable levels.
The red cells, as before, are lagging, and today I posted a lower hemoglobin (9 g/dL) than ever before. As long as this number doesn't drop much further, a little anemia won't keep me from being released. The new thing this week has been a little scare about infections (the coffee table bruise took on some extra redness that concerned the docs), so I have been doing two a day infusions of vancomycin while we wait for the blood cultures to come back. I am convinced there is no infection and that the bruising was just weird because of the combination of no platelets and a vintage de Sade coffee table. Also my clumsiness. As a bonus, though, I got to watch most of the presidential debate hooked up to an IV drip, which provides a feeling of distance. If we'd only thought to watch with the sound off it would have been perfect.
Friday, September 23, 2016
We deliver for you
Day +7, platelets crashed, and had a bag of platelets transfused. Just in time, too, since I had just crashed my knee into the coffee table. Almost immediately the knee swelled alarmingly, so we had a reminder of why platelets are a good idea.
How I came to crash into the coffee table might be a better story--I was distributing the mail, which contained an amazing item.
Rosie moved to Boston this summer, bringing with her a car that had outlived its usefulness. After casting around a bit, we determined that we were going to donate it to the International Myeloma Foundation. This turned out to be difficult, because she didn't have the car's title (I did). So I tried to send it to her, but apparently messed it up in some way that may it non-transferable.
When we were home for a few days at the beginning of August, I went to get a replacement, but the new title had to be mailed from Frankfort. We'd had no problems (other than that it costs $15/week) with the USPS' "Premium Forwarding Service" on our first foray to Rochester, so I set it up for our trip to Colorado. The idea is that once a week the post office bundles up all your mail and sends it to you in a single package. When we got to Colorado, we went to the post office every day or two, but nothing ever showed up. We talked to the clerk, who took my phone number and was trying to be helpful, but apparently "Premium" does not include a ready way to track packages. We returned to Louisville with no mail.
So I visited our Louisville post office, took phone numbers, gave them mine, all to no avail. Apparently this was all the responsibility of someone named "Norm" (really!), who was on vacation until Monday or maybe the next Monday. Sadly, we had to get back to Rochester, to yet another address, before Norm was due back. The PO people advised me to skip the Premium Forwarding Service and go with regular old forwarding. Meanwhile, our mail has been AWOL for almost a month.
Back in Rochester, we began with phone calls. First to Colorado, where the same clerk was still helpful but still hadn't seen the mail. Then to Louisville, where Norm remained on vacation, apparently. No joy at all. An hour later my phone rang and the clerk from Colorado(!) had apparently called the Louisville post office and shook them down for a tracking number, which she gave me, along with the news that the "To" address that the USPS had in their system was not our current address, nor the Colorado address, nor our home address, but the first Rochester address we were using in July. So the package was at the Rochester PO, marked "Undeliverable as addressed."
I headed over to the Rochester PO, and spent an hour waiting for someone to search the apparently unordered heaps of undeliverable mail, only to report that she could not find anything matching this tracking number. She thought it might have been out for delivery, in the possession of the carrier. Two days later, we tried again, and during the course of a lengthy conversation, I found that I could at least set up alerts so that any time the package status changed, I would get an email. After we returned empty-handed from the PO, I got a new message: 3 hours earlier, the package had been returned to Louisville.
I waited two days and called Louisville, asked for Norm. I didn't get him, but the woman I talked to left a message. An hour later, Norm called. I hadn't actually believed that he was real. But he was, and claimed to have our package right in front of him. He promised to send all our outstanding mail in a single package to our current address. Two days later, that package arrived. It contained shipments made during the entire time we were in Colorado, not a single piece of which was necessary or important. And no title.
So today, about a week later, what should show up in the small trickle of yellow-labeled forwarded mail (mostly these are bills from Mayo) but a nice clean new-looking envelope from the Kentucky Transportation Cabinet, containing a title issued August 8. What happened in the interim is anyone's guess. By happy coincidence, Rosie is here visiting us right now, so I was happily (perhaps too happily) delivering the title to Rosie when I hit the coffee table.
How I came to crash into the coffee table might be a better story--I was distributing the mail, which contained an amazing item.
Rosie moved to Boston this summer, bringing with her a car that had outlived its usefulness. After casting around a bit, we determined that we were going to donate it to the International Myeloma Foundation. This turned out to be difficult, because she didn't have the car's title (I did). So I tried to send it to her, but apparently messed it up in some way that may it non-transferable.
When we were home for a few days at the beginning of August, I went to get a replacement, but the new title had to be mailed from Frankfort. We'd had no problems (other than that it costs $15/week) with the USPS' "Premium Forwarding Service" on our first foray to Rochester, so I set it up for our trip to Colorado. The idea is that once a week the post office bundles up all your mail and sends it to you in a single package. When we got to Colorado, we went to the post office every day or two, but nothing ever showed up. We talked to the clerk, who took my phone number and was trying to be helpful, but apparently "Premium" does not include a ready way to track packages. We returned to Louisville with no mail.
So I visited our Louisville post office, took phone numbers, gave them mine, all to no avail. Apparently this was all the responsibility of someone named "Norm" (really!), who was on vacation until Monday or maybe the next Monday. Sadly, we had to get back to Rochester, to yet another address, before Norm was due back. The PO people advised me to skip the Premium Forwarding Service and go with regular old forwarding. Meanwhile, our mail has been AWOL for almost a month.
Back in Rochester, we began with phone calls. First to Colorado, where the same clerk was still helpful but still hadn't seen the mail. Then to Louisville, where Norm remained on vacation, apparently. No joy at all. An hour later my phone rang and the clerk from Colorado(!) had apparently called the Louisville post office and shook them down for a tracking number, which she gave me, along with the news that the "To" address that the USPS had in their system was not our current address, nor the Colorado address, nor our home address, but the first Rochester address we were using in July. So the package was at the Rochester PO, marked "Undeliverable as addressed."
I headed over to the Rochester PO, and spent an hour waiting for someone to search the apparently unordered heaps of undeliverable mail, only to report that she could not find anything matching this tracking number. She thought it might have been out for delivery, in the possession of the carrier. Two days later, we tried again, and during the course of a lengthy conversation, I found that I could at least set up alerts so that any time the package status changed, I would get an email. After we returned empty-handed from the PO, I got a new message: 3 hours earlier, the package had been returned to Louisville.
I waited two days and called Louisville, asked for Norm. I didn't get him, but the woman I talked to left a message. An hour later, Norm called. I hadn't actually believed that he was real. But he was, and claimed to have our package right in front of him. He promised to send all our outstanding mail in a single package to our current address. Two days later, that package arrived. It contained shipments made during the entire time we were in Colorado, not a single piece of which was necessary or important. And no title.
So today, about a week later, what should show up in the small trickle of yellow-labeled forwarded mail (mostly these are bills from Mayo) but a nice clean new-looking envelope from the Kentucky Transportation Cabinet, containing a title issued August 8. What happened in the interim is anyone's guess. By happy coincidence, Rosie is here visiting us right now, so I was happily (perhaps too happily) delivering the title to Rosie when I hit the coffee table.
Thursday, September 22, 2016
nadir, round 2
Today (+6) the leukocytes dropped to near 0, with platelets not far behind. So we'll be here for a few days, maximally isolated. I'm feeling OK, definitely sluggish. Still no major nausea, diarrhea, vomiting, though, and looking forward to the climb back.
Rosie arrived yesterday for a few days' visit. I'm not very lively company, but it's always great for both Liz and me to have some new conversations about new subjects, and since Rosie has just started a new job (her first real full-time one) in a new city (Boston) she has lots to report.
Bizarre torrential rains the past few days, but we stay mostly indoors and dry.
Rosie arrived yesterday for a few days' visit. I'm not very lively company, but it's always great for both Liz and me to have some new conversations about new subjects, and since Rosie has just started a new job (her first real full-time one) in a new city (Boston) she has lots to report.
Bizarre torrential rains the past few days, but we stay mostly indoors and dry.
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