Me and Myeloma Update — Nov 2023

Results of the latest round of tests. TL;DR — Some measures drifting up but no major changes. MM is returning, but still in remission.

Me and Myeloma — Revlimid

Here’s a five minute clip from last September of California State Representative Katie Porter grilling the former CEO of Celgene about cost increases of the multiple myeloma drug Revlimid. That’s the drug that I took as part of my chemotherapy.

Takeaway quote: The drug didn’t get any better. The cancer patients didn’t get any better. You just got better at making money.

Me and Myeloma — Link

The latest tests look good, so I’m clear for another three months. I have collected all my previous myeloma entries into a more coherent essay in my Pages, on the right-hand column.

Me and Myeloma — February 2019

The January tests are in, and they all look really good. Everything is pretty much in the normal range (and those that aren’t are just on the edge), with no sign of the myeloma.

Here’s the deets:

1. M-spike. There’s this thing called an M-protein spike, which measures certain proteins in the blood, ones that shouldn’t be there. It’s one of the prime indicators of myeloma. It’s been “not observed” now for six months.
2. Kappa/Lambda Ratio. KLR is another protein measure. Normal range is .25-1.6. Mine was around 1.5 last time, and is now 1.4. So, in the normal range. Note: both the kappa (10.0) and the lambda (7.3) are also in their normal ranges.
3. Immunoglobulin G (IgG). IgG measures immune response. High IgG says your body is fighting a disease, like cancer. Normal is 700 -1600. Mine started at 3000 a year ago. Then, with the chemo, it plunged to 230 and came back up to 250. This time there’s a new assay method, which says that there’s no significant difference between all those ultra-low values. Mine is currently <320. So, still low.

As I said before, I think if I hadn’t been diagnosed with MM earlier, someone looking at these results would say I was basically healthy, albeit with a suppressed immune system. We check again in July.

Me and Myeloma — October 2018

The October tests are in, and they all look really good. Everything in the normal range, with no sign of the myeloma. A couple of measures are creeping up, but not fast enough to be of immediate concern.

Here’s the deets:

1. M-spike. There’s this thing called an M-protein spike, which measures certain proteins in the blood, ones that shouldn’t be there. It’s one of the prime indicators of myeloma. It’s been “not observed” now for three months.
2. Kappa/Lambda Ratio. KLR is another protein measure. Normal range is .25-1.6. Mine was down around 1.0, and is now up to 1.5. So, in the normal range, but up. Will it keep going up? Note: both the kappa (9.6) and the lambda (6.4) are on the low end of normal (roughly 3-26).
3. Immunoglobulin G (IgG). IgG measures immune response. High IgG says your body is fighting a disease, like cancer. Normal is 700 -1600. Mine started at 3000 a year ago. Then, with the chemo, it plunged to 230. Now, it’s up to 250. So, suppressed, but climbing. Question: when will it get back into the non-suppressed range? Big question: will it then level off?

I think if I hadn’t been diagnosed with MM earlier, someone looking at these results would say I was basically healthy, albeit with a suppressed immune system.

From a “how do I feel” standpoint, I think I’m back to normal. I didn’t realize how badly the chemo had effected me until I recovered from it.

We will take another look in January, but I won’t be publishing anything unless there’s some significant changes.

Me and Myeloma — July, 2018

TLDR: The latest round of tests came back, and there’s no trace of multiple myeloma (yay!). We check again in October.

Details: All my normal blood tests are normal (red blood cell count 4.5 — a little low, but well up from the 3.5’s of earlier this year), and the myeloma-specific tests are the same (IgG is down from 3414 to 212 [which is actually low], M-spike is no longer detectable).

Meanwhile: Retirement next December still looks like a wise decision. Increasing age means the non-myeloma issues are beginning to pile up, and I’m spending more time and mental resources dealing with them. I’m taking six pills in the morning and six at night — heart, gout, antiviral, prostate, probiotics, and more heart. If I stick to my recommended exercise regime, I’ll be doing 20min of neck exercises and 20min of back exercises twice a day, plus 45min to an hour of walking. I may be back to jogging by the end of the summer, but my stamina is way down, and so is my heat resistance, which limits my walking and gardening times. Sleep patterns are irregular.

Overall I’m doing better, but I still feel like I’m ten years older.

BTW: Turns out I’m not the only one with this. Tom Brokaw had it way worse than me, but the same set of drugs has driven his into hiding as well. Here is a 4 minute interview with him on the topic. I note that while I only got a dozen or so blog posts out of it. Brokaw got a whole book.

Cancer Report 1 Mar – 5 April

Good news with a however.

TLDR: Markers all within normal range. MRI looks good. Biopsy normal. We are declaring victory and dropping all drugs. Surveillance check every three months.

However: It will be months while the toxins work their way out, so my fatigue, intestinals, and other side effects will continue, and I’ll continue to feel crappy much of the time (less as time goes by). Immune system will be down for a year (so I still do antibiotics).

Bottom Line: I still have incurable cancer, it’s just been driven into hiding.

Towards the end of March I had another MRI. Same as the last. Stuff me in a narrow metal tube and tell me not to move…for an hour. Then I had a bone biopsy. I thought I knew what to expect, but the pain pattern was different, and I almost kicked the biopsonist in the face. She still got a good twelve inches of marrow out. Enough for a cancer test and soup for two.

Meanwhile, the side effects of the side effects drugs were wearing me down some more — to the point that MJ was getting worried. Lots of days when I spent most of the day in bed. If it hadn’t been for my colleagues at EWU (Debra, in particular), I’d have been in real trouble. Plus, the students were again very understanding. Intestinal troubles continued — think space shuttle launch — and I lost a total of 17lb since this started. We did get the blood pressure vs chemo drugs sorted out, so I didn’t have any more grey-outs (and at one point my systolic hit 160). I suspect we’re going to have to recalibrate again, now that my drugs have made another change.

As I said, my blood markers are all back in the normal range, and the oncodoc liked my MRI. There was some confusion over the biopsy, but that was due to the hospital changing data systems. He actually had to fire up the old system and print out the results. They expect to have these issues fixed Real Soon Now. I’ll have an MIS writeup on that experience sometime soon.

In any event, the biopsy showed no sign of cancer cells, and a 1% level of blood cells in the marrow. Up to 3% is considered normal.

Considering the current readings, and how well I responded (“your markers plummeted”), we’ve decided to forego maintenance chemo for now and just do a press-to-test every three months. If the markers start back up, we’ll do another biopsy (yay) and then either resume full treatment or go to a maintenance regime. Oncodoc doesn’t think there will be a problem for another year or so.

So this will be the last report for a good while. If nothing’s changed, I won’t bother to generate a new one.

Cancer Report 19 Feb-1 Mar

As with much of life, things get worse until they get better.

On the chemo front, the last three weeks were a battle between me and my blood pressure (systolic down to 84 at times), and the associated side effects, like vertigo and grey-out and “hold him down while I administer IV fluids.” There were also intestinal issues, and limb swelling, and all the other stuff I’ve talked about earlier.

On the myeloma front, my blood markers are all down, essentially into the normal zone.

Today, the oncodoc decided that since we could not be sure that the benefit was worth the cost, the game was worth the candle, that the rate of return was worth the risk, we might as well pause for a month to let me recover and see how things are developing.

“We’ve driven the markers down 99.9% and we’re continuing to beat you up, and I’m not sure that beating you up some more will do any good.”

So, right now, for a while, I’m pausing the chemo. I won’t bounce back immediately, but slowly recover normal functions over the course of the next month or so. Continuing to take the bone-strengthening pills (they don’t count as chemo) will help.

End of March I get another bone biopsy and another MRI, which are the gold standard on these things. That’s when we will know, and that’s when we will make plans for maintenance.

Meanwhile, MJ won’t have to interrupt her teaching in order to drag my body to class and to Spokane multiple times every week.

Cancer Report 19 Jan – 9 Feb

So, my plan is to update this record every three weeks, right after the consult with my oncodoc. And if nothing of import happens, I’ll roll it in to the next 3-week update.

This cycle, there was import.

My blood pressure has been running low. This is a common occurrence when BP meds and chemo meds combine. It didn’t seem to be too bad of a problem, because my seated morning BP was in the 116/x range.

Then, at the beginning of February, I went to Deaconess to get my two infusions of chemo. They took my bodily measurements, and the next thing I knew I was strapped down in a chair for an hour and a half with a bag of fluids plugged in to me. My standing BP was 88/x, way down from what they wanted, and I was suffering from near-fainting spells (bad enough that the infusion ladies were propping me up and asking if I needed a wheelchair). Doc didn’t want me driving home like that. In addition to the fluids, they adjusted my BP meds (dropping terazosin for now), and we’ll see. Post-fluids had it back to 100/x, and post terazosin it’s creeping back up over 100/x. It’s still low, but not dangerously so.

Meanwhile, I seem to be stuck in a weekly cycle of exciting intestinal cleanout. We won’t go into details. Suffice it to say, the students have been remarkably patient with me having to run sprint out of class in the middle of a lecture.

Meanwhile meanwhile, my stamina continues down, I get cold easily, and the Dex messes with my wake/sleep cycle, which is why this has been posted when it was.

At the consult I wrote down all the marker numbers, then didn’t save. Students, let that be a lesson to you. Roughly, M was 2.5 and is now down to 0.3, which is normal; F1 was 3400 and is now 190, which is normal; and F2? was 343, but is now … also in the normal range. These are all excellent, he says. The best measure, however, is the result of the bone biopsy, where they take this … device … and pull enough marrow out of your hip to make soup with, and see how it plays on Iron Chef, or something.

We have four more cycles before we do that, and the goal is to drive the biopsy results into undetectability. That doesn’t mean I’m cured, because of the incurable, but it forecasts a long time before relapse. We’ll see how that works out. By my calculation, we will know around the first week of May.

The Long Farewill: Chemotales 3

So, what’s happened this year? Not much new, and the news is mostly good.

First up, I did have a run-for-the-toilet event during the second week of class. That was an actual viral infection that put me in the small room for 18hrs, and dropped five lbs. Worst illness I’ve had this Century. Probably a suppressed immune system effect from the chemo, but not a chemo response, which is good.

As usual, Mr. Phelps, I’m not cured. I’m not done with chemo.

This will go on for maybe another four months. I took notes at our last meeting, but I’m as bad as the students at getting the key points. There’s two proteins we are tracking. One started out at 3400 (mg/L? part of the problem is that different sources use different units of measure. ) and is now down to 340, which is in the normal range, while the other started at 2.5 and is now down to 0.3, but we want that to be zero. Still, the oncodoc is very encouraged.

As for side effects, fatigue and sleep disruption continue, and I still have no stamina. Walking home from school wears me out. When I’m not at work, I’m napping.  Fluid retention remains an issue, but not as bad as earlier. Some blood pressure fluctuations. I get cold, and my systolic drops into the 90’s. Or maybe it drops and I get cold. Then it spends most of the day back up in the 120’s. We are fiddling with my heart meds, and I probably need to stay better hydrated. MJ says that during the Revlimid weeks, my voice gets rough.

Speaking of, we had me down to 10mg of Revlimid/day to suppress a rash. This cycle, we’re back up to 25mg. 48hrs in, and no rash.

EWU has been very understanding and supportive about letting me skip meetings (except that I will be attending Faculty Senate twice a month), and the students haven’t started complaining about slow grading yet.

 

The Long Farewell: Chemotales 2

The second three-week chemo session

EXECUTIVE SUMMARY:

1. It’s working, and working well. Marker levels are back within normal range.
2. It’s showing side effects. We’ll pause Revlimid for one cycle, then adjust the dose.
3. It’s still there. After we adjust, we’ll keep pounding down the cells and driving them back in their holes, like errant Taliban, to make sure we get as much time as possible before the recurrence.

DETAILS:
So, there’s a lot of physiology going on. Some of it may be me and old age, or winter, or cumin. Some of it may be the chemo, specifically the Revlimid. At least I’m not growing fins.

Rash: Revlimid makes my stomach looks like a supermarket tomato. Not a garden-fresh bright red tomato, one of the pale red ones that look like there’s too much grey in the paint. Stopping the drug caused the red to go away.

Blood pressure: Dex makes my BP drop for some reason — 94/60 the day of, improving thereafter. Not a typical response.

Fatigue/sleep disruption: Not fatigue, lethargy. Not tired, just, wouldn’t a nap be nice right now. Sleep for 2-4hrs, up for 6-8, sleep for 2-4. Fortunately, at this point in the year, I’m pretty well in charge of my time, so I’m not deprived, just …. um … scattered. I can make classes, but too many meetings do me in. I can correct finals, but I have to time it right. The students have been remarkably supportive and understanding. Thanks, guys.

Intestinal: Dire rear. You don’t want to know. Words like explosive would be involved. On the good side, I am all set for my next colonoscopy. On the bad side, it hasn’t kept my weight from going up ten pounds.

Loss of stamina: I used to go up stairs fast. Now, I go up slow, and breath heavily when I hit the top. At least I don’t have to actually pause anywhere in the process. Is this the chemo? Old age? Lack of outdoor exercise due to it being 30F most days?

Feet: Ankles still swelling, and making me look like someone’s great aunt. Raising the foot of the mattress helped. Not bad enough to need intervention. May be some interaction between the chemo and my heart meds.

Looking back, not a lot different from Cycle 1, except that the side effects are shouldering their way into my life.

Doctor is pleased. I am pleased. I told him I’d was willing to be his poster boy for miracle cures.

The Long Farewell: Chemotales 1

TLDR: I just completed my first cycle of chemotherapy for multiple myeloma. Two out of three protein tests are in, and they show levels back down in the normal range. The third test takes longer to process. The doctor says that so far this is good.

Key Points:
1. I’m not cured, I’m not in remission, I’m not stopping chemo. This will go on for maybe another four months.
2. It was about as benign a process as one could have and still call it chemo. No hair loss, no bowel issues, no nausea.
3. I am more fatigued, and napping an additional two or three hours a day, and I don’t have the stamina I once had. This cuts down on my office hours, and my willingness to go out in a La Nina winter and take long walks. I’m also cutting my classes a little short. The students are very understanding.
4. Possibly because of all this, I’ve gained 10 lbs.
5. I’m drinking lots of water, and that has to go someplace, and usually it decides it wants to go early in the morning. Very early. And then again a couple of hours later. At that point, I’m awake, if you wonder why you get stuff from me at all hours. Fortunately, I can take a nap later.

Screwups:
1. I have a number of meds that are as needed, for nausea, etc. One of them wasn’t optional. Omeprazole is a daily, to keep the chemos from rotting out my stomach. I missed that until the nurse went over my meds. I’m taking it now.
2. As part of the performance art associated with approval of Revlimid in the US, I have to fill out a questionnaire every two week cycle (No, I don’t share my Revlimid…). I was expecting they would tell me when I was supposed to do the survey, but they were expecting me to get that info from Celgene. So I missed the start of this week’s Revlimid. Fortunately, timing isn’t vital, and overnight shipment (Portland -> Nashville -> Spokane) will get it here by the weekend.
3. they told me they would be giving me a chemical to maintain bone strength, but it didn’t register that they would give it as an infusion (I was thinking, pill), so when they came for me with the needle I climbed on the back of the chair and shrieked and flung latex gloves until the doctor talked me down.

Narrative:
So, we started back at the end of October. My cycle was twice daily pills (I counted four grams worth, no wonder I’m gaining weight), with a weekly short infusion and a weekly pre-short blood draw. Now, they’ve added an every three week long calcium infusion and associated big blood test (the one I just passed) an additional calcium horse pill, to fill in around the edges.

I feel like an astronaut. There’s this tremendous team working for me — doctors, nurses, staff — and I’m just the guy at the top of the rocket. I don’t think this gets enough emphasis. In this fight against entropy, there’s not much that I am doing beyond checking my clock and saying to people, OK, stab me now. Thanks guys.

Him

Me

 

 

 

The Long Farewell: Köpfen fährt

Which is bad German for “brain trip”, as in, my brains went on one — nothing to do with gas.

Tuesday night was scary and embarrassing. I got halfway through my lectures, and drew a blank. I would look at a slide, and I couldn’t figure out what it said. It felt like my eyes were skittering around the slide, never landing on any actual words. I couldn’t read the slides, and I couldn’t think of anything to say about them. Horrifying.

After abut ten minutes of this, I gave up and sent the students home early. My intent, for this weekend, is to add enough notes to make up for the lack of a lecture.

I talked to the onconurse, and she was mystified — it was a brain problem, not a vision problem. Well, it turns out, I think, that what started it was a vision problem.

Have you ever looked at a bright light and had the memory of it hanging around your field of vision, a big blob of color? Have you ever had the blob appear as a line, or rectangle, sometimes pulsating? I have (particularly since the cataracts), and this appears to be an example, only bigger.

So, at some point I apparently glanced into the projector, and got at least one large, and possibly several small, optical artifacts. They were big enough to cause severe blanking of the visual field. If I looked at a digital clock that said [12:35] I would see 2:35], with no indication that the first digit was there, even if I knew it. The rest of the visual field was equally shattered. Imagine reading a typewritten script, where the typist was missing a finger. The lack of any visual clues is what made the situation scary. It was as if my blind spot had expanded to cover most of the field of view, and it wasn’t obvious that this occurred because of projector flare — it might have been getting too close to the projection screen, or a bright spot on the computer.

It was very strange. I’d look at the slide on the PC and I wasn’t picking out words — it was mostly spaces. I could see more, but not a lot more, on the screen, and I just couldn’t integrate what I was seeing, couldn’t come up with the story line for that slide.

There’s a photoshop technique called fake cheesecake (don’t google it, you’ll just get recipes and porn), where you take a perfectly respectable picture of ladies in modest bathing suits, and lay a screen over it with strategically placed holes that covers the suits and just reveals the skin, and makes them look nude. It was like that, but less sexy.

Not being prepared for that kind of a problem, my brain decided that it just couldn’t read any of it, and refused to cooperate. It took an hour or so of experimentation at home to figure out what the problem was. Thursday night went much better, since I knew what to avoid.

A friend later suggested the possibility of a stroke, but given that I had no trouble talking or driving or, when I got home, reading, and since a more direct explanation exists, I shan’t worry about it.

UPDATE: So, it’s a new Tuesday night, and wouldn’t you know, I walked into the classroom and had much the same reaction as before (only at a much lower level, and I was ready for it). It’s a poorly lit lab space, with a number of bright point sources, which may have something to do with it. Next week, sunglasses!

 

 

 

The Long Farewell: I Aten’t Ded*

When last we saw Our Hero, he’d contracted a case of the myelomas, and was worried about his future. We pick up our story early on Respect for the Aged Day.

Right before school started I was subjected to some more tests: a full body MRI and a Bence-Jones protein test. The MRI went about as expected. They put me in a pair of too-small/too thin hospital pants, tied my feet together like I was headed for a medieval burial, strapped me into a cold, narrow tube (like I was headed for a medieval burial), and spent half an hour pulsating my body with x-rays and magnets. If I didn’t have cancer before, etc…

The Bence-Jones test was easier. All I had to do was pee in a bottle. For 24 hours. I handed in the almost-full jug, and the tech remarked that some people had turned in two of those. My response was that some people had the oddest hobbies.

Due to scheduling issues (my trip, the MRI, his trip), I couldn’t meet with my oncodoc until this week. The news was mixed

1. Bence Jones showed low levels of proteins (but not zero)
2. X-rays showed three small spots on the mid-spine**
3. Bone marrow showed trisomys on chromosomes 9, 11, and 15

By a strict definition, I have moved from smouldering myeloma to officially having (possibly indolent) multiple myeloma, with the trisomys pointing to a possibly more aggressive version.*** My oncodoc thinks I’m a borderline case (I would still be smoldering if it wasn’t for those damn spots), and seriously considered continuing a watchful waiting stance. His conservative nature overcame that, however, and I start a standard MM chemo regime as soon as the insurance paperwork clears. The paperwork is important, because the drugs (Revlimid, Velcade, and dexamethasone, AKA rev/vel/dex) can run in excess of $100K/year. Fortunately, it looks like insurance will cover most of that.

The fun drug is Revlimid (AKA lenalidomide). It’s an improved form of thalidomide, which means I can’t be within ten feet of a pregnant woman (fifteen feet if she’s downwind), or three feet of a woman who might become pregnant.

So now I am set for a six month regime of one pill a day, ten pills once a week, and one shot a week. Side effects include constipation and diarrhea, fatigue and insomnia, dry, sweaty skin, and mood swings that have nothing to do with the fact that I’m playing a game with Death and he’s already bought Park Place, Boardwalk, and all the railroads.****

What does all this mean for my chances of seeing the return of Halley’s comet? Based on a 2012 (i.e. 5 years old) study the median survival time with my cocktail of “novel drugs” is ~7 years, roughly. So, 7 years! Yay! Not so fast Gosset. Median says half survive longer, but half don’t make it that long. It’s like my stats students. They get mad when I tell them that half the class is below average. On the bright side, my oncodoc seems to think that I’ve got a good chance of beating the seven year mark, since my priors look reasonably good.

On the not-so-bright side, I still have a theoretical ~10% chance of not making it to Christmas of 2018.

 

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*Title is a Terry Pratchett quote.

**The only part of my back that doesn’t actually hurt

***On the other hand, there’s at least one journal article that says trisomys might indicate longer survival chances under certain conditions. I shall have to ask.

****Actually, it’s hyperactiveness, that wears off after a couple of days. So on the one hand I can take it before the weekend and will calm down before my next class. On the other hand, it might cause people to say “Well, he’s finally getting some work done.”

 

The Long Farewell: Intimations of Mortality

The bad news is, I’ve got multiple myeloma. The good news, such as it is, is that it looks like it’s the so-called smouldering myeloma variety, AKA dumpster fire in your bones.

TLDR: It’s blood cancer. It’s incurable. It’s controllable. I have an early stage.

MM normally starts out as MGUS, or monoclonal gammopathy of undetermined significance. MGUS converts to MM at the rate of about 1.5% per year. Mine may have been that way for ten or 15 years, undetected. Since the treatment for MGUS is hide and watch, that was fine. In fact the treatment for smouldering is still hide and watch, but at a somewhat more watchful level.

I don’t know much more than that right now. When I get back from Japan, we’ll do a full body MRI and pee in a bottle for 24hrs. Ask me again in October.

Not much available on survival statistics for MM, not because it’s an exotic disease, but because doctors are terrible at reporting statistics. The best I can find is that the survival rate for full up MM, untreated, is 7 months. Treated 5yr survival 49% . Assume median (and mean) survival is 60 months. Range is then 7 – 113, StdDev ~ 0.25*range = 28 months. This is not totally accurate, because the curve is not normal, on account of the 0-month wall on the left. The curve is skewed right by an unknown amount.

In any event, the clock doesn’t start ticking until the smouldering bursts into flame, and who knows when that will be. Still, I’m dumping my long-term Treasury Notes.

I am off to Japan in 12hrs or so, and my responses will be erratic. The family request that all messages of support and condolence be sent to the Democratic National Committee.