Just a Little Faster

Yesterday we visited our favorite indoor track, where I walked three miles as fast as I could, no running. I forgot to bring my watch, so I don't know how fast that was. No significant pain in my left knee.

Today I did bring my watch, and logged the best times for three miles in recent history, 14:33, 14:17, 14:09, total 42:59. I'm plenty happy with the times, especially with the increase in speed as the miles went by. Again no significant knee pain. It's a good head start on 2020.

Don't you like that year - 2020?   2019 always seemed awkward, but twenty twenty just sort of trips off the tongue, or the keyboard.

Have a wonderful Christmas season and a safe and happy 2020.

Don

Kansas City Marathon Review

Kansas City Marathon, my 30th state and 47th marathon. We really liked this marathon! They got lucky with the weather today, too, maybe a little warm for the slow runners (like me) but 50 at the start and perhaps 73 or so at my finish.

My Race: The course is hilly, and I walked most of the way up most of the hills. I started with an extra (very ugly) cotton shirt and temporary mittens made from holey old sox, discarding all early in the race. I took six Clif Shot gels and at least six salt packets along the way. I took water at every aid station, but ended up thirsty anyway.

I met lots of Team In Training (TNT) runners, raising money for the Leukemia and Lymphoma Society, and thanked every one of them. They support myeloma research too, so they just might be saving my life. Thank you again!

No problems along the course except I really got tired of running uphill (duh!) and I did cramp up a little, though that was mostly after finishing. Otherwise I had fun and nothing hurts. Some of the time I ran beside a wheeler on a conventional chair, who was doing VERY well I thought. He described only one problem with the chair - it limited his downhill speed, because the front wheels would start to shimmy like the wheels on a grocery cart. He was a very competitive guy, too. I hope he can steal, borrow, or rent a racing chair sometime. He’ll do very well.

As I was truckin’ along, maybe mile 7 or so, Jay, husband of Amazing Cancer Girl, scooted up beside me and re-introduced himself. We had met at a conference last December. It took me a moment to connect the dots, but it was wonderful to see Jay again, and especially as a race volunteer. They live in KC.

The Marathon: It’s a great one, I’d recommend it to anyone. Be prepared for hills, is all. One WONDERFUL thing: Some of the race was on main thoroughfares, and those roads were CLOSED to motor traffic. No coned-off lanes, no cars at all. I felt safe. Love that! The police who managed the street crossings were wonderful, as were the volunteers who did that. There were enough spectators that I heard my name yelled in encouragement dozens of times (I wear “Don” on my shirt), and I high-fived a lot of little kids. The expo was good. Parking in a downtown ramp was free and easily reached from freeways (US 71 to 22nd St, W to McGee, S straight into the free ramp. Don’t be distracted by the $5 ramp on the left just before the free one).

The only problem I had was in the finish area. Sunshine tells me that there were finishers’ shirts for marathoners (though not half marathoners) but somehow I missed mine. Now I admit that I’m not the sharpest tack in the box when I’ve JUST finished a marathon, but I actually did make it a point to look around and TRY not to miss anything. I didn’t even know there WAS a finisher’s shirt, since we had all received a cotton shirt at the expo. They might have directed me to the shirts after putting on my medal, or whatever. Oh well, maybe half my fault and half theirs.

Also, they ran out of half-marathon finishers medals, and when my two girls asked for theirs, they were directed to a tent to sign up for medals to be mailed in a month. Nevertheless, it’s a good race, despite my bellyaching.

My Myeloma: I'm taking a novel drug called pomalidomide, made by Celgene, in a trial at Mayo Clinic. It's keeping the myeloma stable, so far, and I'm very happy that I'm not only above ground but able to run and enjoy life like any normal person. Yay to modern science! More about my myeloma here.

Splits: 11:16, 21:05 (2 mi), 21:36 (2 mi), 39:56 (4 mi), 9:44, 10:48, 10:58, 10:25, 20:41 (2 mi), 10:35, 23:30 (2 mi), 9:41, 22:32 (2 mi), 12:36, 13:50, 11:21, 11:44, 14:20 (1.2 mi), total 4:46:32, average pace 10:56, finished third of six in my age group.


A TNT runner, raising money for Leukemia, Lymphoma, Myeloma, and other blood cancers. Photo taken by Sunshine or Sweetpea. I don't know this runner, but I love her anyway.

MMRF Race for Research

The MMRF Race for Research is my race! I started slowly, because the start is a bit congested, then ran steadily (no walking!) to the finish in 26:18, pace 8:29. Good enough. Along the way I saw the ghost of Steve Quick, smiling and leaning against a tree, but couldn’t stop to see if he was real. He probably was - he said "hello." Great of you to come Steve.

The race was particularly delightful this year, the fourth annual. Weather was perfect, sunny but cool with a little breeze. As always there was a live band, and about 1000 participants raised $150,000 for myeloma research. That’s wonderful, folks, keep me alive! It’s a masterpiece.

Splits: 9:00, 8:14, 9:06 (1.1 mi), total 26:18.

Saturday, Sep 26:

The St Croix Valley Runners had a good-size group on Saturday, running in the early-morning fog. I ran slowly, because I had a race the next day, not pushing much at all. Nevertheless I finished in 46 minutes, just a minute over my usual 45-minute "tempo" pace. I ran with Dennis for a while, an old-time SCV runner who is coming back to running. He’s a lot faster than me, but was also taking it easy because of an upcoming race. Pace 9:12, good enough.

Lincoln National Guard Marathon

Not a bad event at all. If I lived here I’d do it every year. But I don’t, so this marathon gets me Nebraska, my 21st state and 34th marathon. Weather was OK, about 55 at the start and about 65 when I finished. Plenty warm, actually, but I don’t melt as easily as some runners and I was OK.

For some reason this was a joyful marathon for me. Over and over again I realized how wonderful it was to be floating down the street with the other runners, hearing people say "go Don!," feeling the sun on my head, the breeze in my face, and the pavement underfoot. Perhaps it has something to do with the good test results from Mayo last week. Or maybe it was because of all of the Team in Training (TNT) runners in this race. TNT is part of the Leukemia and Lymphoma Society (LLS), which supports research for myeloma and other blood cancers besides leukemia and lymphoma. It’s a way for LLS to raise money. As I understand it, the TNT runners collect pledges for LLS from their friends and relatives, due when the runner finishes the race. I may not have that whole picture, though.

Many of the LLS runners are doing their first marathon, or half-marathon. I like to encourage them. When I pass one, or one passes me, I tell him or her that I have myeloma, that they might be saving my life, and that they are my hero. All true. They like to hear that, and in fact more than one said that was just what they needed to hear to keep going. It’s emotional, on their part and mine. All good. Sweaty runners don’t hug much, otherwise we would be running down the road four-leggedly.

I took it fairly easy this time, finishing in about 4:50. I wanted to finish in less than five hours, no problem. It was my slowest marathon since starting the CC-4047 and dexamethasone drug regimen a year ago last March, but I think I could have shaved off ten minutes if I had felt that driven. Instead, I felt exuberant and full of joy today so I took it easy and tried for a consistent pace. Indeed, the last 10k took only four minutes longer than the first 10k. That’s cool.

Slight pain: My back hurt, in or near the spine well above the waist, but that came and went. It’s gone now. It’s a new thing - I hope it doesn’t come back. No joints hurt. The hip flexors that have yelled at me on long runs for a year or so were silent today. Perhaps they’ve figured out their role in this marathon running. All leg muscles hurt: quads, hamstrings, and calves, as might be expected. In fact one of the calves cramped up a few minutes after the finish, which is an excruciating pain that lasts about a minute but seems like an hour. It goes away faster if I can stretch it gently, and I was able to lean against a tree and do that. I took plenty of salt this time, and water at every aid station, so the best solution for the calf cramps will be to TRAIN BETTER! Three more marathons coming up. This was a long run for the first of them.

I might write some more about this marathon tomorrow. Right now, It’a a masterpiece!

Splits: 11:20, 10:13, 10:59, 9:58, 11:25, 9:31, 10:56, 11:36, 11:27, 11:20, 11:14, 11:09, 21:32 (2 mi), 10:34, 12:04, 11:42, 12:27, 10:49, 11:11, 11:12, 10:21, 11:49, 10:58, 12:03, 11:05, 1:58 (0.2 mi), total 4:50:43, pace 11:06.



If it weren't called the Lincoln National Guard Marathon, it could be called the Lincoln Apple Blossom Marathon. We saw a lot of onamental crabs in full blossom.

Good News

First, there is good news on my myeloma blog. Cancer markers went down. Yay!

Thursday we three went once again to the North St Paul Community Center and ran on the indoor track. Way better than running outdoors on public streets in the fog. I ran ten miles, for the first time in a while, and it was entirely uneventful. No pains, no problems, not even the back pain of three days before.

I took water after every two miles, which accounts for the odd-even difference in splits. In the final two miles I was able to go a little faster, suggesting that maybe I could have maintained the pace a little longer in a race. Next week the "long" run will be 13 miles, building toward marathon season.

Splits: 8:46, 8:50, 9:03, 8:51, 9:02, 8:52, 9:06, 8:47, 8:51, 8:33, total 1:28:41, pace 8:52. It’s a masterpiece!



Breakfast after Thursday's run: Gluten-free oatmeal with a few organic flame raisins, blueberries, organic strawberries, kiwi, pineapple, walnuts, dark chocolate, fat-free organic milk.

MMRF Race for Research

Sunday, Sep 28, 2008:

This is my race! I have myeloma, and they raise money for myeloma research. I had to be there and I wanted to be there. It’s quite a nice 5k, once around Lake Phalen, entirely on paved trails, well organized. Misty and cool this morning, 55 degrees, but we can’t change the weather.

Still worried about the right knee, I started off pretty carefully, wearing knee wraps (foam rubber tubes) and running on the flattest part of the trails. Hallelujah, no pain. None at all, not even a hint, all the way to the finish and beyond. I was able to pick up the pace a little as the mile markers went past, and finished in a respectable 26:09. Not good, but the goal was to run as gently as possible on that knee, with TCM looming just a week away, and that goal was met.

What happened to the pain? Why did it appear in the first place? Is it gone for good? Did the stretches fix it? The wraps? Running on the flat? Would it have shown up in a longer run? All questions, no answers, but I’m happy - it’s a masterpiece.

Splits: 9:10, 8:16, 7:59, 0:44 (0.1 mi), overall pace 8:26.

Carrie Tollefson’s grandmother died from myeloma, and Carrie comes to this race as a celebrity. As in years past, she started at the back and glided past many of us with encouraging words, a magnificent smile, and no apparent effort at all. She represents Minnesota very well.

Wednesday, Sep 24, 2008:

I attempted to run with the Woodbury Runners, planning for 5.2 miles, but after less than a mile the right knee hurt and it was clear that a longer run was not in my best interest. Rich circled Carver Lake once with me, and I stopped and came home.



Dinner: Organic roast chicken, onion and spices, watermelon, a good beer.

Very Nice Six Mile Run

North St Paul Community Center, 6 miles in 52:48, pace 8:48. This was a “recovery” run after Sunday’s 8k race, and it went just fine. No pains of any kind. After the run I met with my personal trainer, who taught me a little about stretches and then set me up with a regimen of exercises to strengthen the bones in my back that are under attack by the myeloma. Tomorrow I’ll try those at home, and we’ll see whether I learned them or not.

Splits: 8:53, 8:48, 8:47, 8:50, 8:52, 8:38.



"Orange Lunch" yesterday: Organic 1% cottage cheese, pimento olives, organic squash with organic salsa, organic sweet potato, papaya, mango, and cantaloupe.


Yesterday's dinner: Wild-caught Alaskan salmon with organic lemon juice, organic sweet pickle relish, Sunshine's gluten-free teff bread with dates and pecans, local honey, oven-baked parsnip slices with organic catsup, mango, organic cauliflower. Seconds, please. Thank you, I did.


Tonight's dinner: Braised organic lemon-pepper chicken on a bed of gluten-free chow mein noodles, cucumber soaked in organic red wine vinegar, vegetable mix of organic rutabaga, organic carrots, onion, and fresh organic basil.

Ethical Steroids?

More about the steroids below; first the run: North St Paul Community Center 6 miles in 51:16, not such a bad time considering I was trying not to hurry. Best news of all: No pains! None. YAY! It’s a masterpiece.

Splits: 8:49, 8:32, 8:37, 8:34, 8:32, 8:11, average pace 8:33. I’ll take it, and in fact I felt PEPPY this morning, probably because of new medicines that I took last night. Which brings us to the ...

Ethical Question:

I am taking dexamethasone (DEX) 40 mg once a week to treat cancer. More on my myeloma blog. DEX is a “potent synthetic glucocorticosteroid” (Wikipedia). According to IIAF rules, DEX is permitted “out of competition” but not in competition. I am always in competition. My doctor says that it can make one feel “peppy” the day after it is taken, and maybe the day after that. Then another day later I may want a six-hour nap!

I take the DEX on Friday nights because I started on a Friday (yesterday) and the drug trial that I am on says I should stick to the schedule as closely as possible. I usually race on Saturday and Sunday, so I may feel "peppy." DEX has the potential to break down muscle, as contrasted with anabolic steroids, so I doubt there are any long term benefits to athletic performance, but “peppy” may be a genuine benefit. This morning I felt as though I had about six cups of coffee, but without having to pee every 20 minutes. And I ran at the pace my body wanted to go, which was a little faster than expected considering my current low level of fitness.

So I’m a little upset about the ethical issues. Ethics are about ourselves, as I see it - I wouldn't have to speak up about this and I will never be drug tested. Some people might just give the poor bugger with cancer a free pass, but I don’t really want a free pass. How will I feel if I manage somehow to make a good time and finish ahead of my age-group friends in, say, an MDRA Grand Prix event? Are there other people that I should contact, at MDRA or USATF, to get input or a ruling on this? Should I run the races but declare myself ineligible for awards or rankings? I’m tempted in that direction - I sure do want to run the races.

Anyway, I’m conflicted and would appreciate anyone’s input.




Last night's Tex/Mex dinner and salad: Organic romaine lettuce, cucumbers, organic medjool dates, organic blueberries (yum), Sunshine's homemade avocado sauce, organic blue corn chips, pistachios, organic red wine sauce. Not pictured: A yummy chicken soup with lots of vegetables.

Comforting Run

North St Paul Community Center overhead track, 12 miles in 1:42:15, average pace 8:31. I was feeling a little morose because of recent myeloma test results (poor baby) and really didn’t want to do this run, but Sweetpea and Sunshine were encouraging and off we went. Twelve miles later I felt quite a lot better, especially after the speedier last mile. The community center was busy, always people on the track, all going different speeds, even one runner who was going faster than I was for a while. Normally I’m passing almost everyone, walkers and runners. I liked all that activity, even though it involved a little zig-zagging around people.

Splits: 8:44, 8:31, 8:44, 8:31, 8:45, 8:25, 8:39, 8:25, 8:46, 8:31, 8:31, 7:43. Water after miles 2, 4, 6, & 8; I usually walk a half lap when taking water. Natural pace around 8:25 to 8:30, breathing four footfalls per full breath until the last mile, then three footfalls.


Recent salmon dinner: Fresh-caught Alaskan salmon (canned) with yogurt and spices, naval orange, organic chard with cranberries and pistachios.

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.

Taper

Running:

Fifty degrees, sunny, slight north breeze. Easy four-mile jog in 34:33, pace 8:39. Purpose: Stay loose during the taper. Slight pain in right knee at the start, went away. Calves are tight; have been since Sunday’s “recovery” run. Taper will fix that if I don’t forget my stretches, EVERY DAY whether I run or not. Note to self.

Myeloma:

Peeing in a bottle today; I will get blood drawn tomorrow and see the doctor next week. Anticipation builds ...

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.

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.

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.

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.

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.

Great Day to Run

Running: St. Croix Valley Runners, 5 mi in 41:02, pace 8:12 min/mi. Lovely, sunny, 30-degree morning, if a little slippery in spots. I ran with Tom the whole way; he was doing the first five miles of a long run in preparation for an upcoming marathon. Luke and Art were out ahead, with George, Roy, Charlie, Dave, Doug, & John behind us. Also, my sweeties braved the slippery conditions, doing a 5k while we did our 5 miles.

No pains, no strain. Tom and I were able to chat fairly easily as we jogged along. Nike Miler shoes (for the good grip), tights and knee protectors, two shirts and a wind jacket. I unzipped the jacket some of the time.

Myeloma: I felt "fragile" after Thursday's bone marrow biopsy, walking and moving quite gingerly. Much better Friday morning, and virtually normal today, Saturday. The BMB is a minor surgical procedure that all myeloma patients undergo from time to time, and this was my third. They do approximately a bazillion lab tests on the marrow and the blood. Next Wednesday, March 14, I'll see the doctor for those results and the results of Tuesday's CT scan and MRI. Then we'll decide on further treatment for the cancer.

Meantime: The nurse/practitioner who took the biopsy advised me not to shower for a few days, to avoid washing contaminants into the surgical wound. But after that run I'm a bit ripe; it's time :=)

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!

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 ...