Afternoon Delight

Neutrophil Count:

I'm still taking pomalidomide (CC-4047), participating in a trial of that new drug. It has kept my tumor burden low and stable for two and a half years, but in the last half year it has also suppressed my neutrophils enough that they tend to fall below the cutoff of 1000 cells per microliter (1.0 K/uL). In each prior case we have drawn the initial (failing) blood sample in the morning. But in another blood draw in the afternoon, usually a few days later, the count was always plenty high, sometimes almost double the morning count. In the meantime, though, there was a question whether I should get the pomalidomide pills or not, and more than once the treatment actually slipped a few days.

So this time we finally got smart and did the blood draw (CBC with differential) the AFTERNOON BEFORE the Mayo visit, at the local clinic. I ran up and down a few flights of stairs first, as usual, trying to work up a little adrenaline to chase some neutrophils out of their hiding places. The clinic did a very professional job, running the CBC and manual differential so quickly that I had the printout in my hot fist less than an hour later. It showed a neutrophil count of 1400, so I went to Mayo the next morning, August 24, knowing that there would be no drama about the neutrophil count and the pomalidomide. A saving of money, time, and stress. Whew.

IgG dropped about 5% this time, from 1160 to 1100 mg/dL, which is good. M-spike, however, remained the same at 1.1 g/dL (1100 mg/dL), which is technically impossible. M-spike measures the BAD (monoclonal) portion of immunoglobulin G, whereas IgG measures the total of both good and bad. They cannot be equal unless the good portion is zero, which is quite unlikely. Both measurements have tolerances, however, especially M-spike, and I suspect that they just happened to lean toward one another this time. In any case the result is either stable or down a little, which is good. Lambda light chains are up quite a bit, but so are Kappa light chains and the ratio is virtually unchanged. I'm happy - on to Cycle 33!

Supplements:

I hate taking supplements. I admit it. I take a LOT of them, but I have to make myself do it. This time my 7-day pill minder ran out on the same day that the cycle started, and I didn't fill it right away. When it's empty, I don't take any supplements, and for ten days I just didn't take the time to fill those little plastic boxes, though I religiously took the pomalidomide. When I did fill the boxes again, I cut back the number of different supplements significantly. I dropped the curcumin, feverfew, flaxseed oil, pancreatic enzymes, resveratrol, bromelain, milk thistle, and half of the CoQ-10 (ubiquinol). Later I put one or two of those back - the current supplement regimen is here.

Results of the supplement holiday:

• Tumor burden: Nothing happened, at least nothing bad. I conclude that those dropped supplements have not contributed to the myeloma treatment.
• Neuropathy: It did seem to get a little worse. Previously, I felt some numbness in the right thumb and the left pinkie finger. Now, though, I feel it in both thumbs, both pinkies, and both index fingers. In addition, the backs of both hands feel a little numb. I think that my feet are a little more numb too, athough I haven't tested them as carefully. PLEASE NOTE: My neuropathy is insignificant compared with what many people feel. I'm not complaining about it (much); the important point is that the neuropathy did seem to get worse during the ten days with no supplements and has not improved since resuming them.
• A bodily function unique to males actually seemed to improve during the ten days without supplements. Is there one particular supplement that I am still taking which tends to suppress that function? More research is indicated.

Some current test results:

Test		May 27		Jun 29		Jul 29		Aug 24		Remarks
M-spike g/dL		1.1		1.0		1.1		1.1		Best tumor measure
IgG mg/dL		1110		1120		1160		1100		Good tumor measure
L FLC mg/dL		2.58		1.74		1.86		2.79		L Free light chains
Calcium mg/dL		9.9		9.9		9.9		10.1		Below 10.2 is best
Creat mg/dL		1.3		1.2		1.0		1.3		Kidney, normal
HGB g/dL		14.7		14.5		14.0		15.7		Hemoglobin, good
RBC M/uL		4.36		4.30		4.16		4.39		Red cells, low
WBC K/uL		3.6		3.4		2.8		4.4		White cells, OK
ANC K/uL		0.92		1.09		0.93		1.41		Neutrophils, low

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

That's canned salmon a'la Sweet Pea. Big strawberries, small plate.

Race Myeloma Awareness

A verrrry bad pun - "raise" myeloma awareness - get it?

Myeloma patient Keith May and the IMF have entered a racecar design called "The Survivor" in a contest called Sponsafier. The winning entry will be built as a full sized car, showcased at a NASCAR race, and your votes can help push us across the finish line.

This will raise awareness of myeloma, the International Myeloma Foundation, the great work being done to change the course of myeloma, and the work that still needs to be done. Here's what you can do:

Just take 30 seconds every day until August 28, click nascar.myeloma.org, wait for the screen to develop, and simply click the “vote” button. You don't have to log on or enter ANY information. For extra credit, you can do this with every computer that you have available, every day.

“The Survivor” is one of several hundred entries in the Sponsafier contest. Some are just artistic designs and some like Keith’s support a cause. Now we all have the opportunity to support Keith, myeloma awareness, and the IMF by voting every day for the next 11 days, and by asking your friends, families, and colleagues to vote too.

The messages on the car are simple: “Beat myeloma to the finish line,” and simply “Beat Cancer.” What better way to get there than by racing? Click nascar.myeloma.org.

Neutrophils and Dermatology

On Thursday, July 29, I visited Mayo Clinic to assess Cycle 31 of pomalidomide (CC-4047). Still stable. IgG was up about 3.5%, and M-spike went from 1.0 to 1.1 g/dL. But we've been here before. In February, IgG was a little bit higher than it was Thursday, and M-spike was 1.1 just last May. The numbers may have a slight upward trend, but they do seem to bounce around on their way up. I'll not worry this time. Maybe next time.

Neutrophils:

My neutrophil count was 930 cells per microliter, just below the threshhold. They won't give me a new bottle of 28 pomalidomide capsules for the next cycle until neutrophils go above 1000.

Therefore, we scheduled another CBC (with differential) for the afternoon, because my neutrophil count seems to follows a circadian rhythm, rising through the morning into the afternoon. In all but one of the previous four cycles I have needed a second CBC, and in each case the second neutrophil count was comfortably above 1000. In all of those cases the second count was taken on a later day, in the afternoon.

This time, though, the second count was done the same day, in the same Mayo Clinic lab. By Thursday afternoon, neutrophils had jumped 63%, from 930 at 9:00 am to 1520 at 1:00 pm. Furthermore, the total white cell count also jumped up from its all-time low of 2.8 up to 3.8.

I knew that physical exertion could increase neutrophils, so before the 9:00 am blood draw I jogged a half mile, walked up and down six flights of stairs, and did 30 pushups. If that helped, it wasn't enough. Dr Lacy informed me, though, that it's really adrenaline that flushes the neutrophils into the blood stream. I asked if a good scare would do as well as exercise, and she thought it would. Anyway, for the second blood draw, I ran a few very short, high-intensity sprints and ran full speed up two flights of stairs. I really don't know if that helped either - maybe the increase is all due to normal circadian rhythm.

Next time, I'll get the CBC drawn the afternoon of the DAY BEFORE the Mayo Clinic visit, at a local clinic. This is OK with Dr L, and may solve the problem of unnecessary duplicate neutrophil counts.

Dermatology:

At the last visit, I asked Dr L about a bump on my forehead, wondering if it was any kind of skin cancer. She didn't think so, but scheduled a "dermatology consult" for this visit. Well, at Mayo Clinic that's more than a cursory peek at one spot. I was asked to put on a hospital gown (the kind that opens in the back, of course), and the doctor checked most of my skin, even those parts that are almost always in the shade.

He was not at all interested in the little forehead patch that brought me in, but he saw several "pre-cancerous" spots on my forehead and zapped them very quickly and efficiently with a little can of freezing spray. He said that about one in a hundred of those spots can become malignant. He asked about a spot on a knuckle, and I told him that it was a bruise (I knew when it happened), but he nonetheless zapped that one too.

I asked him about the skin on my arms, which is now so thin and weak that I can't even use band-aids on it. I know that it has been thinned by age and by steroids, but he said the big culprit is sun damage. We discussed sun screen (use a good one, such as the Vanicream that Mayo Store sells), and hours of the day - he suggested 10:00 to 3:00 I think, but I would go another hour in the afternoon, 10:00 am to 4:00 pm, daylight savings time. That's a three-hour window each side of high noon, sun time.

We asked if there was a way to repair the damaged skin. He said that Retin-A has been tried by some, but he wasn't impressed by the result. Retin-A can make skin even MORE sensitive to the sun, and has other significant side effects, so I'll stay away from it but probably will be more careful to use sunscreen.

The doctor said that if any of the frozen spots became open sores, I should just use vaseline on them. We asked about Neosporin, because I've had such excellent results treating other cuts and scrapes. He replied that they recommended Neosporin in the past, but eventually discovered that about a third of people are allergic to it. So far no problem with my treated spots, but if there is a problem I'll use Neosporin anyway because I don't seem to be allergic.

Some current test results:

Test		Apr 29		May 27		Jun 29		Jul 29		Remarks
M-spike g/dL		1.0		1.1		1.0		1.1		Best tumor measure
IgG mg/dL		1010		1110		1120		1160		Good tumor measure
L FLC mg/dL		2.41		2.58		1.74		1.86		L Free light chains
Calcium mg/dL		9.7		9.9		9.9		9.9		Below 10.2 is best
Creat mg/dL		1.3		1.3		1.2		1.0		Kidney, normal
HGB g/dL		14.1		14.7		14.5		14.0		Hemoglobin, barely OK
RBC M/uL		4.21		4.36		4.30		4.16		Red cells, low
WBC K/uL		3.3		3.6		3.4		2.8		White cells, LOW!
ANC K/uL		0.73		0.92		1.09		0.93		Neutrophils, LOW!

Related links:

My Myeloma		A discussion of my myeloma, not very technical.
My Treatment History		Not technical.
My Test Charts		Graphic displays of several key test results over time.
My Test Result Table		Somewhat technical. Best with a wide browser window.
My Supplement Regimen		With links to where I buy them.

That's the oatmeal, right in front on top.