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.
Friday, September 30, 2016
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.
Monday, September 19, 2016
downslope
The cell counts are going down now, though I'm still feeling OK. I'd guess I might get to the nadir Wednesday or Thursday. The general feeling is that digestion and metabolism are just sluggish, and everything takes longer to happen. No major drama.
Today's events were enlivened, if that's the word, by a morning visit to the podiatrist. This was scheduled back in July, when my right leg and foot were seriously uncomfortable with some combination of muscle strain and nerve damage. Right now, my leg feels fine, although there is a spot in my right foot that's bothered me for many years--the neurologist thought it was a neuroma, and the podiatrist (who, this being Mayo, was really and orthopedic surgeon) was supposed to consult. I'd meant to reschedule or cancel, but hadn't remembered to do so. It wasn't like I was going to schedule foot surgery with all this other stuff going on.
The appointment took about an hour, and consisted of some of the most excruciating time I have spent here, including the ring extraction. Both the resident and attending docs, but especially the latter, squeezed that foot (and the other one, for comparison) in about 100 spots, almost all of them affirmative in response to the question "does it hurt when I do this?" If I had any ticking bomb secrets to tell, I would have spilled them in the first few seconds.
The conclusion: my feet are all messed up, and maybe there's a neuroma.
Today's events were enlivened, if that's the word, by a morning visit to the podiatrist. This was scheduled back in July, when my right leg and foot were seriously uncomfortable with some combination of muscle strain and nerve damage. Right now, my leg feels fine, although there is a spot in my right foot that's bothered me for many years--the neurologist thought it was a neuroma, and the podiatrist (who, this being Mayo, was really and orthopedic surgeon) was supposed to consult. I'd meant to reschedule or cancel, but hadn't remembered to do so. It wasn't like I was going to schedule foot surgery with all this other stuff going on.
The appointment took about an hour, and consisted of some of the most excruciating time I have spent here, including the ring extraction. Both the resident and attending docs, but especially the latter, squeezed that foot (and the other one, for comparison) in about 100 spots, almost all of them affirmative in response to the question "does it hurt when I do this?" If I had any ticking bomb secrets to tell, I would have spilled them in the first few seconds.
The conclusion: my feet are all messed up, and maybe there's a neuroma.
Saturday, September 17, 2016
Day 0 times 2
Wednesday was the high-dose chemo, yesterday the transplant, and everything is waiting now. I'm feeling fine, the one noticeable difference the increased fumes from the cell preservative (DMSO) which leave a funny taste in my mouth and apparently fill the room with a "creamed corn" smell. Apparently, the longer freezing time for this batch of stem cells increases this effect. Black coffee tastes good, though.
It's time to starting saying goodbye to the first batch of stem cells, shock troops for the tandem transplant, holding the fort while being mowed down by "friendly fire." Sorry for the war metaphor--it's obviously overdone and maybe I've said before that a cancer patient is more the battlefield than the warrior. Anyway, the theory of the thing does still bug me, but I finally found these results that both Drs. Dispenzieri and Gertz had mentioned, and they are encouraging:
It's time to starting saying goodbye to the first batch of stem cells, shock troops for the tandem transplant, holding the fort while being mowed down by "friendly fire." Sorry for the war metaphor--it's obviously overdone and maybe I've said before that a cancer patient is more the battlefield than the warrior. Anyway, the theory of the thing does still bug me, but I finally found these results that both Drs. Dispenzieri and Gertz had mentioned, and they are encouraging:
Source: Cavo M, Salwender H, Rosinol L, et al. Double Vs Single Autologous Stem Cell
Transplantation After Bortezomib-Based Induction Regimens For Multiple Myeloma: An Integrated Analysis Of Patient-Level Data From Phase European III Studies. Blood.
2013;122(21).
OS means overall survival, hr-cyto means high-risk cytogenetics (like mine), and failing CR means not achieving a complete response after the first (induction) chemo treatments (also like me). So this graph shows combined data from a number of European studies for patients with characteristics just like mine, who were given either single or double transplants (abbreviated above as ASCT). After 4 years, the differences in survival between the two groups are huge, and the relative risk of dying (the hazard rate, HR) across the whole period is much lower for the patients who received tandem transplants. This is about as good as it gets in clinical studies. So never mind the theory, it looks like something important is worth doing.
Monday, September 12, 2016
The plan for round 2
Today we met with the transplant doc, NP, and clinic coordinator to go over the procedure for the second transplant. Nothing new here for us, but here's a quick review for those watching from home: tomorrow I'll get a central line (aka Hickman catheter) installed, through which the chemo, stem cells, and all the many blood tests ahead will be routed. Wednesday they will give me the main chemo drug, melphalan, and a couple of others to minimize the immediate side effects. Thursday is a day off, then Friday is the transplant. After that, we try to stay out of trouble and wait for everything to work its magic, with daily monitoring of cell counts, vital signs, fevers, nausea, vomiting, etc. The whole experience should be a little more streamlined because we do not have to collect a new set of stem cells--we just use one of the two remaining bags that are in the freezer.
Past performance is no guarantee, but I am hoping this time will not be too bad, either. We hope to be done by the end of the month.
Past performance is no guarantee, but I am hoping this time will not be too bad, either. We hope to be done by the end of the month.
Friday, September 9, 2016
Back for more
We're back in Rochester for the second transplant. Yesterday was biopsy day, which in principle should say something definite about my response to the first transplant, but it's hard to parse the results posted so far, except to say that it's clear that there still are tumor cells actively reproducing, and that they generally look pretty similar to what was there before the first transplant. This is not surprising, although many people do better. That's why we're back. Such is the state of the art in oncology: do the same thing over again and hope for a different result. Sometimes it works, too.
Before we left Louisville, I did manage to get in a bike ride--nine miles with no trouble getting up the same hills that nearly did me in at the beginning of August. I was pretty sure that the red blood cells had come back, and yesterday's blood work confirmed that they had more or less returned to normal values. Too bad they won't be sticking around for long. I was just beginning to enjoy the feeling.
Before we left Louisville, I did manage to get in a bike ride--nine miles with no trouble getting up the same hills that nearly did me in at the beginning of August. I was pretty sure that the red blood cells had come back, and yesterday's blood work confirmed that they had more or less returned to normal values. Too bad they won't be sticking around for long. I was just beginning to enjoy the feeling.
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