So-so Doctor Visit

Yesterday my oncologist/hematologist gave me the results from last week’s tests.

IgG, M-spike, and Beta-2 Microglobulin were all up from a month ago, though none very much. Lambda light chains were down a little. Actual values are displayed graphically in the charts and numerically in the test result table. In short, it appears that the cancer is still advancing slowly despite the thalidomide treatment. Time for something new.

The doctor suggested Revlimid. I proposed, instead, a two-month respite to let the effects of the thalidomide settle out, followed by an "alternative medicine" curcumin regimen. That will probably mean eight grams of curcumin daily, with bioperine and an oil to enhance bioavailability. We will continue that regimen until a result is evident, and then start Revlimid and dexamethasone if the curcumin has not stabilized the cancer. He readily agreed; I'm proud of him!

Meantime, we will do tests every month to see what’s happening, and I will meet with the doctor again in two months.

An interesting side note: The doctor asked about my running. When I told him that I won my age group in the recent Austin Marathon, he said that he was surprised that I was feeling so well and running so well, considering the test results. He further remarked that some of the CBC and chem test results showed evidence of very good nutrition. Kudos to Eagle Momma.

Related links:

• My Myeloma A discussion of my myeloma, not very technical.
• Charts Graphic displays of several key test results over time.
• Test Result Table Best with a wide browser window. Very “technical.”
• Treatment History Not technical.

These links are also on the side panel and will remain there.

Grumpy Racer

I am. After finishing the Get In Gear 10k race yesterday I was happy, even though I knew at least three guys in my age group had finished ahead of me. I thought I had missed my last-year’s time by 18 seconds. Turns out, though, I missed it by 2:18, and would have finished first in my age group this year if I had run as fast as last year. 2:18 is a LOT of time to lose from one year to the next. So now I have to whine and over-analyze in order to put it all behind me.

I prepared for the race as if it were important, even tapered for it, carbed and hydrated, warmed up, the works. At the start I felt great, ready to beat the world, trying to go out at the perfect, sustainable pace. Alas, the pace was sustainable for only a mile, and I slowed some every mile thereafter. First mile 7:02, overall pace 7:33. Tsk. Here are some possible reasons for the slowdown:

1. Temperature: This year the temp was 68 degrees at 9:53 am, which is 20 degrees warmer than last year. This does make some difference. In the spirit of over-analysis, I looked at the times of 10 top runners in my age group and nearby, four women and six men. On average, their times were 1:18 slower this year than last. Most of that can be attributed to race temperature I believe, perhaps some to aging. It may account for one of the two minutes.


2. Age: I’m a year older than last year. OK, that could account for some difference, but not two minutes. In fact, last year I broke my PR at every distance I ran, and I was a year older then too. I’ve only just finished my fifth year of running and could well continue to get faster for another year or two; a sharp decline is not likely.


3. Motivation: Last year I was in a head-to-head competition with Lee for the Minnesota Grand Prix, and did have him in view most of the way in the Get In Gear race, only passing him in the last half mile. That could make the difference; rabbits are good.


4. Trail Mix: I ran a tough 25k trail race a week ago, and no one in my age group who finished Get In Gear ahead of me ran that race last week. Might make a little difference. Am I a little arrogant to think that I could recover from that in a week?


5. Thalidomide: I’ve been off it for a week and a half now, but it could still make a difference. In particular, I read (somewhere) that thalidomide causes a loss of muscle mass. I don’t know the truth of that, particularly for a runner who trains regularly, and my weight has not changed. If it is true, however, then some amount of muscle has been replaced by fat which does not contribute to speed or endurance.

Enough analysis. Add that stuff all up to get 2:18. I’m thinking that 1 and 3 are the big players here. Not much I can do about number 1, but I suppose I should work on number 3. I don’t know how to do that. Run fewer races, so that I really do care about the ones I do run? Food for thought.

The good news is, no pains, no problems; I felt wonderful afterward and still do the day after. Shorts and a sleeveless shirt; definitely should have brought a singlet instead; I thought it would be about 10 degrees cooler. It was a beautiful day. Splits: 7:02, 7:14, 7:30, 25:11 (last 3.2 mi pace 7:52 average).

Post-Race Recovery Run

Running:

Breezy, hilly, 68 degrees, six miles in 52:30, pace 8:45, plenty fast for a recovery run. My sweeties and I ran the same route, consisting of an out-leg, then five loops, and then back. But we did the loops in opposite directions, so we greeted each other frequently during the run. Slight pain in the right knee at the start, smack in front below the kneecap, probably the meniscus. But it faded.

Now I’m tired, thirsty, hungry, and badly in need of a shower. Otherwise I feel wonderful! Really. That’s what it’s like to be a runner. Someone should write a song about it.

Honeydew, cantaloupe, apple, blueberries, yogurt, asiago cheese. It's a picnic!

Myeloma:

Thalidomide was discontinued after last Tuesday evening, so the side effects are fading now, although my waking heart rate was just 38 this morning. That’s low even for me; normal is about 48. The rash seems a little better already, and experience says that the heart rate will come back up to normal within a week or two. Urine collection and then blood tests Tuesday and Wednesday this week. Results a week later.

Crocuses

Purpose of today’s short run: Retain fitness, keep loose for Saturday's Trail Mix, work on running form. Watching the Boston Marathon, every runner seemed to use his or her arms in the same manner. Elbows were bent at 90 degrees, apparently quite loose, and out from the side of the body, not straight down. I have a tendency to bend my elbows more than that, bring them down, and hold them tight, which causes my shoulders to move more than they do when I take on the “Boston” upper-body form. It will take a long time for the Boston form to become natural; I go back to the old form when I’m not thinking about it, but today was a day to work on it a little.

Fifty-two degrees this morning with a little breeze; two thin shirts were one too many when running with the wind, but just right going into it. Shorts and thin gloves. I wish I knew more bird songs; lots of different species were calling for mates and claiming their territory today.

Four miles in 34:03, pace 8:31, a little faster than intended but so what? Off thalidomide now, but I nevertheless felt a little right-foot neuropathy. Breathing was a little more rapid than expected, probably because I had just finished breakfast. Calf pain from Tuesday is gone, thankfully a false alarm.

Eight Miles, Calf Pain

Hilly, breezy, 50 degrees. A good run, 8.2 mi in 1:09:48, pace 8:31. In contrast with yesterday’s 8-miler which was faster than it seemed, this one seemed faster than it was. I’m such a poor judge of speed. It was enjoyable nonetheless, and as always I feel wonderful afterward. I heard the songs of Canada geese, mallards, robins, cardinals, red-winged blackbirds, and several other songs that I don’t know. I saw lots of little birds in weed fields, but don’t recognize the species. A single-engine airplane roared down the runway and took flight as I ran past the airport, it’s oily exhaust fumes briefly floating by on the breeze.

One minor problem: I woke this morning with a little pain in the right calf, very localized. I was unable to massage it out, and it came and went and returned again during the run, though not made worse by the run. It’s still there. Could be: (1) Just a minor cramp from all the running (36 miles in 4 days), or (2) A minor blood clot, called a thrombosis, caused by the thalidomide. If it’s a cramp, which is most likely, then I’m not at all concerned; it will go away as I taper for the upcoming marathon. But just in case it’s a clot, I took an extra aspirin and have been eating ginger. More important in the long run, I took my last thalidomide capsule last night, so the cause will soon be gone. Another reason to be glad that the thalidomide is done.

Mad Dogs and Englishmen

... go out in the midday sun. I’m half English, so “Let’s GO!” A happy midday run on my favorite rock & gravel service road along the railroad tracks. 66 degrees and sunny, dry with a stiff south breeze. 8.1 miles in 1:07:30, for a pace of 8:20 in what was intended to be a recovery run from Saturday’s 20-miler. Faster than a recovery run, but I felt good throughout. Funny - after watching the Boston Marathon I felt like I was just shuffling along at an old man’s jogging pace, and was surprised to find that it was a little more sprightly than that, and on soft gravel besides. I’d be delighted to run my next marathon at this pace.
A slight initial pain in the left knee went away. A slight post-run pain in the right knee went away too. Cranky old knees, but there is arthritis in my family, so I’m lucky to have so little knee and hip trouble.

I have a training plan that looks ahead one or two marathons, covering a three to four month period. The current plan goes through Grandma’s Marathon. I can move things around on the schedule, but the per-week mileage goals and the long runs are always completed unless I’m injured. No exceptions. This week the 20-mile run was initially scheduled for Tuesday (tomorrow), but for various reasons it got moved to Sunday (yesterday). Then I moved it up one more day to Saturday so that I could run part of it with my running group. Saturday is the first day of my training week, and this week is entirely shifted around now but will still see 40 miles of running.

Myeloma:

I’m supposed to take thalidomide for eight more days, but I’ve decided to stop it after tonight, because: (1) The right-leg neuropathy seems to be getting worse (though I did not feel it today); (2) The rash on my back is definitely getting worse; (3) Thalidomide slows my heart rate and my race times; (4) I have a blood draw in a little over a week and would like to see what happens to some of the numbers if I’m off thalidomide for a week first; and finally (5) There is no evidence that the thalidomide is doing any good now anyway.

Nice Five-Miler

Nice run at the club, five miles on the indoor track in 41:05, pace 8:13. No pains, no problems. Breathing was mostly four footfalls per full breath, which is about normal for the pace. I’ll breathe a little easier when the thalidomide ends for good in 12 days. Literally and figuratively. Splits: 8:42, 8:23, 8:12, 8:10, 7:39.

Now it’s SO lovely outside, I almost wish I’d waited for afternoon. Almost.

Thalidomide Isn't Working Any More

That seems to be the bottom line; my myeloma is no longer responding to thalidomide 50 mg daily. As the table shows, three of the four important markers were up on March 28, not down. None of them are down substantially since December, despite the use of thalidomide during that time.



Beta-2 Microglobulin is one of two markers used in the new International Myeloma Staging System to determine the stage (severity) of a person's cancer. It is a protein that can be high because of kidney disease, perhaps caused by the cancer. But most likely in a myeloma patient it will be high because it is shed by the cancer cells themselves. I'm concerned because it has risen steadily, if slowly, since December. However, it may also be shed in greater quantities right now because the thalidomide is still killing some cancer cells, causing beta-2 microglobulin to be released by each dying cell. We will see when the thalidomide treatment ends. Let's hope it goes back down to normal.

For now, the plan is to continue thalidomide for one more three-week period, then have more tests and see the doctor. Assuming that those results don't show a dramatic improvement, we will then be able to conclude that thalidomide at 50 mg, as a single agent, is no longer a useful treatment for me.

Then what? The doctor has suggested Revlimid, a new analog of thalidomide which is more powerful and less apt to cause side effects. It's unimaginably expensive ($6000 per month I hear); thank Heaven we have good insurance.

I have also read about curcumin, and discussed it with people who have taken it, with good results. Curcumin is an extract of the spice turmeric, and does not seem to cause side effects even in large amounts. Its anti-cancer effect appears to be modest, not dramatic, but that may be appropriate for me since my myeloma is still in an early stage (technically still MGUS). It is actually being studied in clinical trials for treatment of multiple myeloma and other diseases. Here is an informative blog by one person convinced of its value: Margaret's Corner.

In early May I will probably go to see the doctor armed with information about curcumin and see if I can talk him into ordering the tests while I take curcumin.

Forty-mile Week

Another run on the indoor track. Four miles in 34:15, pace 8:34. This completed the goal of 40 miles for the week, which goes Saturday through Friday, but this week Friday is a day off. I felt sluggish today, running heavily and breathing rapidly. Last night I forgot to take my thalidomide until 2:30 am, so it was still near maximum blood concentration during this morning’s run. That may have caused the sluggish feelings. Splits 8:51, 8:35, 8:27, 8:21. No pains.

A Race for the Hardy

Hence not for us :-) We three showed up at the Get Your Rear in Gear 5k, picked up our shirts and bananas, and left for the club. Hard rain and 40 degrees is just no fun. I ran 5 miles at the club in 40:52, pace 8:10. No pains at all, though I did feel a little rubbery-legged for part of the way. That’s not an unusual feeling, probably due to too much coffee and too little food; it doesn't seem to slow me down.

I actually feel a little bit stronger, now that I’m temporarily off the thalidomide, so my pace seems a little faster. But tomorrow is a long run, so there was no hurry today and I tried to hold back.

Wore the new Brooks Burn shoes to check them out. My 15th pair, they are fine. Splits: 8:31, 8:08, 8:01, 8:06, 8:06. Breathing mostly four footfalls per full breath.

Labs Today

The urine-collection jar was up to 2.4 liters this morning, more than usual, when the 24 hours were up. You start counting odd things when you have cancer. Then after the blood draw, the nurse wrapped the puncture site with gauze instead of using tape, because their tape is so good that it brings some skin with it when I later remove it. This works better. I'll have results next week.

Last night I took the last thalidomide capsule for a week or so. The next step depends on what the doctor sees in the labs. That's good - it's powerful stuff, even at the low 50-mg dose that I take, and I will appreciate a week off.

Ouch

Running:
No run today. I started out to do an easy 5 miles and immediately felt a pain just below the left knee and a bit to the inside. It might have settled out after a while, but the pain was pretty sharp and in a very specific location within the bone. It feels fine when I'm not running. I'll try again tomorrow, and if it persists I'll see the doc about it. I wonder what a shin splint feels like?

Myeloma:
Peeing in a bottle today (24-hour urine collection), blood draw tomorrow. Last thalidomide tonight, for at least a week. Lab results will be available next week, but I won't see the cancer doc for another month.

Human Race 8k

There is a "common wisdom" in the running community that says a brand-new masters runner gets faster for five to seven years, and then begins to yield to the ravages of age and gradually slows down again. April will be five years, and I was rather hoping that I’d be one of those who might get seven years of improvement in speed rather than five. But if so, today didn’t demonstrate it; I finished in 36:59, a minute and 46 seconds slower than last year. Why is that? Here are some possibilities:

• Thalidomide: When I took it three years ago I was convinced that it slowed me a little. I did skip last night’s dose, but it may take days or weeks for the effect to wear off completely.
• Motivation: I won my age group in both the Grand Prix and Runner of the Year last year. It was a LOT of work. Do I need it this year?
• Just not a great day. Last year it was a great day.

I think all three. The motivation one bothers me the most, because I really did want to beat my time from last year. But even the first two miles, where I wasn’t tired, I wasn’t able to run as fast as I ran those same miles last year. So there’s something going on besides just motivation.

Whine whine. Third of twelve isn’t bad; I’ll settle for that today! It was a good race, I enjoyed it, and so did my sweeties, who made good times of their own.

I ran hard to the water stop at mile 2.5, then was unable to drink much water because I was breathing so hard. After that I walked for brief stretches. Splits: 7:22, 7:14, 7:36, 7:46, 7:07. Temp 41, wind S at 18. Shorts, LS shirt, wind jacket, ear cover, mitts. Gloves might have been better than the mitts. Breathing: three footfalls per full breath almost all the way.

Easy week coming up, only 30 miles. That’ll be good.

Cool, Crisp Sunrise

St Croix Valley Runners 5 mi in 42:06, pace 8:25. Wonderful day for running, with the sun rising bright orange on the horizon as we ran toward it. How splendid! We did have to make sure to stay out of the way of cars whose drivers might be blinded by that sun, however. Temp was about 20 degrees, nice and crisp, not much wind.

Unfortunately, I felt quite lethargic and clumsy this morning. Is that the thalidomide talking? Or just the effect of 40 miles in the previous week? I’m thinking the thalidomide. I’ll skip tonight’s dose, hoping for a good time in tomorrow’s 8k. Running today: Luke, Jim, Art, myself, Roy, Paul, George, Gauss, & Dave. Also New Dave, who ran for a while with Luke & Jim, then disappeared around mile 3.5 or so. Nobody knows where he went. Those of us who followed behind never saw him. Wrong turn in the Liberty addition? A new runner could easily take one wrong turn there and be quite lost. We did search a little for him by car afterward, but no dice. Sure hope he’s OK!

Wonderful Morning

Excellent morning run, outdoors in 30-degree temp, 8.2 mi in 1:05:48, pace 8:01. I always run fast when with my speedy friend Jim. Cloudy, slightly windy, just perfect running weather. A pain-free tempo run in preparation for the big 8k race this weekend, part of the Minnesota Grand Prix.

We chatted much of the way, then settled down to serious running (and breathing) for the last two or three miles, at (I think) a somewhat increased pace. This finishes 40 miles on the week, with just four days of actual running.

Only problem: I didn’t feel like I could have gone much faster today, but I’ll have to go almost a minute per mile faster in that race if I'm to live up to last year's time. Uff-da. But somehow the mind and body respond in a race. I think the thalidomide makes me a little sluggish, so perhaps I’ll skip it the night before that big 8k; Doc says that’s OK.

If you're interested in the latest myeloma news, scroll down to the next-previous post.

Bone Marrow Biopsy Results

I saw the oncologist/hematologist today, and got the results from last week’s tests.

The Bad News: The bone marrow biopsy performed last Thusday shows about four percent malignant cells in the bone marrow. This is about double the percentage seen in the previous BMB 18 months ago, despite two recent months of treatment with thalidomide.

The Good News:

• That means the "doubling time," a measure of the cancer's aggressiveness, is about a year and a half. This has not changed much, and it is a relatively long doubling time.


• Four percent is still low. The cancer is unlikely to be hurting me yet. In fact, my body might tolerate two or even three more doublings before bones and organs are affected.


• There are many, many more treatments available. Some may work and some may not, all are toxic in some way, and all eventually stop working. But they offer time.


• Meanwhile, laboratories around the world are working on new treatments, with a view toward making myeloma a chronic disease, if not a curable one.


• The MRI of my lower spine shows no injury in the nerves going to my legs. Furthermore, although the peripheral neuropathy in my right leg is still there, it is not getting worse.


• The CT scan of my skull did not disclose anything that looked like myeloma.

I am continuing to take thalidomide, 50 mg per day. The doctor has modified the regimen, however, from four weeks on and two weeks off, to three on and one off, with monthly monitoring. I’ll see him again in about seven weeks.

Related links:

• My Myeloma A discussion of my myeloma, not very technical.


• Test Result Table Mine. Best with a wide browser window. Very “technical.”


• Treatment Table Also mine, not technical.

More Than You Want to Know

Three different medical tests in the last two days:

• MRI of Lower Spine: Examine the nerves in the lower spine to address the neuropathy (falling asleep feeling) that occurs only in the right leg. Thalidomide can cause neuropathy, but it is usually symmetrical.


• CT Scan of Skull: Learn more about the "lucent lesions" (representing small dense places) reported on the recent x-ray bone survey. These can be caused by myeloma, or maybe I just wandered too close to the Vice President and his shotgun.


• Bone Marrow Biopsy: This is the gold-standard measurement of the progress of myeloma, the actual tumor burden. A sample of bone marrow and a separate sample of the bone itself are extracted from the hip. It is an outpatient hospital procedure, with normal life resuming within a day or two afterward.

Plasma cells are an important part of the human immune system, producing the immunoglobulins that fight infection and disease. Myeloma is a proliferation of malignant plasma cells.

Two important results from the bone marrow biopsy are the percentage of plasma cells in the blood and the percentage that are abnormal. Normally those are about 2% and 0%. I have had two prior BMB's; last time my numbers were about 9% and 1.5%. When myeloma is at its worst, both numbers can be as high as 80% or 90%. Some doctors say that 10% is the threshhold for Stage 1 myeloma, others say 20%. So far, my myeloma has been below Stage 1, not yet hurting any bones or organs.

The BMB also returns many other results, some of which can be predictive of the aggressiveness of the disease, the speed with which the cancer is apt to grow. Those results have previously shown that my myeloma was only moving at a modest pace. Let's hope these do too. I'll post about it.

Love those people who are close to you, and make today a masterpiece!

Feel-good Run

A very good run! Seems to me that often happens, a bad day is followed by a good one. NSP Community Center 6 mi in 49:12, pace 8:12. Could have gone faster but didn’t want to get hurt on the corners.

Splits: 8:40, 8:13, 8:07, 8:03, 8:07, 8:01. Almost entirely four footfalls per full breath. Slight pain in the left hip, not the bursa. Didn't bother much. This is new, but doesn’t feel like it wil carry forward. I think I slept crooked on it last night; I’m back on thalidomide and sleep like a stone.

Is It Getting Scary Yet?

I've taken thalidomide for two rounds now, each 28 days in length. The blood and urine tests, unfortunately, don't yet show much improvement. Serum IgG is up slightly, serum lambda free light chains are up slightly, beta 2 microglobulin is up slightly, ESR is up significantly, x-rays indicate "possible" holes in my cranium, I'm experiencing a little neuropathy in one leg, and albumin is down slightly; all of those are not good.

And, for the first time ever, I have light chains appearing in the urine, though a very small amount. However, they are the wrong light chains. They are "kappa," while I have "lambda" light chain disease (one of several forms of myeloma). This is not good, but I’m not sure it’s bad.

On the good side, the M Spike (a good indicator of the total tumor burden) is down 20%, and all of the rest of the CBC and chem results are normal. Aside from a little neuropathy and maybe a few tiny holes in my noggin, I'm just fine! No organs are damaged yet.

But the overall picture begs for more testing. The doctor has ordered: (1) Bone marrow biopsy (my third, very much like getting a tooth extracted from my butt); (2) CAT scan of my noggin; and (3) MRI of nerves in my lower spine to see what can be learned about the neuropathy. Maybe the thalidomide is unmasking an existing condition.

Actually, I'm delighted with these tests; the doctor is being very proactive. Also we're doing one more round of thalidomide. After that we may switch to Revlimid, which is similar to thalidomide but much newer, more potent, and with fewer side effects (read: less neuropathy).

I'll see the doctor in two weeks, more news then.

Related links:

My Myeloma A discussion of my myeloma, not very technical.

Test Result Table Mine. Best with a wide browser window. Very “technical.”

Treatment Table Also mine, not technical. Will be updated ...

Feel-good Run

Running:

NSP Commuity Center 4 mi in 33:12, pace 8:18. Today was supposed to be another recovery run, at whatever pace felt good. For some reason, it felt good to run a little faster than marathon pace. Walk, jog, run 4 mi (timed), walk, stretch. Breathing six footfalls per full breath at the start, then five, and four at the end. Slight pain in the left-hip bursa, nothing to worry about. Otherwise, I feel almost recovered from Sunday’s marathon. Whoopee! Splits: 8:41, 8:22, 8:14, 7:56.

Myeloma:

Cancer labs today. I peed in a bottle all day yesterday and last night (24-hour urine collection) and gave several little tubes of blood at the clinic today before the run. On March 1, the doctor will advise us of the results. I hope to see that the thalidomide has driven the major cancer markers down a bit. Whether that has happened or not, the doctor will probably prescribe thalidomide for at least another month. Meanwhile, today is a masterpiece!