April Fools Test Results

Thursday, April 1, was the end of Cycle 27 of my trial of pomalidomide (previously CC-4047). The cancer has been declining or stable for more than two years now, and it was again Thursday. M-spike is still 1.0 g/dL, and IgG is down slightly, indicating that the M-spike value is probably correct. So that's good - wonderful even. Worth a celebration!

But some of the other test results are strange.

Liver Enzymes:

The reference range for AST is 8-48 U/L, mine was 85. The range for ALT is 7-55 U/L, mine was 112. They have been out-of-range high before, but not this high. Two possible explanations: (1) I had taken Biaxin, an antibiotic, to treat an infection in my hand, for the three days prior to the blood draw. Liver injury is a possible side effect of Biaxin; and (2) Muscle injury can also raise those enzymes, and I had run pretty hard on Tuesday, which always damages muscle a little bit. No doubt there are more possible explanations that I don't know about.

Dr KDS switched me to Keflex (cephalexin) to deal with the chance that Biaxin is the problem. And my primary care physician (PCP), the local Dr L, will recheck the liver enzymes on Monday.

Neutrophils:

Dexamethasone (DEX) actually helps support the neutrophil count. Since I've discontinued DEX, neutrophils have trended downward. Last month they were 1290 per uL, this month 940. That's a surprisingly big drop. The myeloma doctors don't want it to go below 1000, so if it stays down there we will have to reduce the dosage of pomalidomide, probably by stopping the treatment altogether for seven days out of each 28. For obvious reasons, we don't want to do that.

We know that other stuff is going on, though. I have a hand infection, I'm taking antibiotics, liver enzymes are high, so PCP Dr L will also recheck neutrophils on Monday. Then we'll worry about the pomalidomide dosage.

Free Light Chains:

Lambda light chains decreased from 2.10 to 1.82 mg/dL, which by itself sounds good. However, Kappa light chains plummeted from 1.06 to 0.27, and the ratio therefore went down from 0.50 to 0.15. Since Lambda and Kappa measurements tend to move together, the sharp decrease in the Kappa value calls the Lambda value into question. I can't make any sense of this. I'm hoping that the Kappa result is just wrong. Wacko. We'll see next month.

Red Blood Cells:

My red blood cell count has been below the bottom of the reference range every month but one since the start of the pomalidomide trial. This time it's just above the bottom, into the normal range, and hemoglobin is up too. Hurray! I have noticed that I can run a little faster too- maybe that's why.

Other Discussion with Dr KDS:

• Bone Density: Dr KDS had looked at last month's DEXA scan and told Dr D, a Mayo bone-health specialist, that my myeloma is under control but that I am a runner and a fracture would be devastating (like it wouldn't be for anyone!). My densities are:
  • Femur necks: T-score is -1.1, indicating mild osteopenia. Density for each is about 0.93 g/cm(sq). This is down about 3% from 2003, though Dr D didn't know about previous scans.
  • Lumbar spine: T-score is -1.2, indicating mild osteopenia. Density average for L1-L4 is 1.08 g/cm(sq). This is down about 4% since 2003, also unknown to Dr D.
  Dr D suggested Fosamax (alendronate) 70 mg per week, for not more than five years.
• I have a lot of faith in my PCP Dr L, and told Dr KDS that I would discuss this with him and get the prescription from him if he recommends it. Another topic for Monday.
• I took chlorophyllin this month, a new supplement, to help boost neutrophils. Since it didn't seem to do any good, and some other results are screwy, we agreed that the chlorophyllin would be stopped right away. Done.
• I am still taking naproxen sodium (Aleve) 220 mg once daily, to deal with headache and because there is a small chance that it will have some anti-myeloma effect, as Celebrex seems to have. Dr KDS had no problem with this.

Bisphosphonates for Myeloma:

Mayo Clinic and other medical institutions are backing away somewhat from the use of IV bisphosphonates, prescribing Aredia instead of Zometa and limiting the treatment to two years or so. And here you see a recommendation for an oral bisphosphonate (Dr D above) where an IV drug would have been prescribed just a year or two ago. Bisphosphonates remain in the bones for many years, and there is some evidence that overuse can lead to brittleness because the bones cannot renew themselves in the normal way.

Bone doctors estimate the probability of a broken bone with a formula called FRAX. When I put my numbers into the FRAX Calculator, I get a 6% risk of any fracture over the next ten years, and a 1% risk of a hip fracture. That's pretty low, not much above the risk for the general population. But FRAX is optimistic for a myelomiac, because myeloma tends to cause bones to weaken more rapidly than normal, especially in areas where myeloma lesions form. It will be an interesting discussion with my PCP Dr L.

Mayo Clinic Results Are On Line:

If you have ever been a Mayo Clinic patient, you can go HERE to log on and view results. I don't know how far back the results go, but mine are there from my initial treatment at Mayo in March, 2008. Not every result is there - a recent electrocardiogram is missing - but all of the normal (even abnormal) labs are there. You will have to get set up to log in and view your results, though, which involves mailing in a notarized form. Or you can sign up in person at your next appointment.

Some current test results:

Test		Jan 07		Feb 04		Mar 04		Apr 01		Remarks
M-spike g/dL		1.0		1.0		1.0		1.0		Best tumor measure
IgG mg/dL		1110		1180		1130		1070		Variation is normal
L FLC mg/dL		2.18		2.78		2.10		1.82		L Free light chains
Calcium mg/dL		9.6		9.8		10.1		9.8		Below 10.2 is best
Creat mg/dL		1.1		1.1		1.0		1.2		Kidney, normal
HGB g/dL		14.4		14.2		14.7		14.6		Hemoglobin, normal
RBC M/uL		4.05		4.00		4.17		4.39		Red cells, normal
WBC K/uL		3.5		3.8		3.4		3.3		White cells, low
ANC K/uL		1.38		1.22		1.29		0.94		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		Best with a wide browser window. Somewhat technical.
My Supplement Regimen		With links to where I buy them.

Oatmeal underneath, of course. Huge organic strawberries, blueberies, kiwi, walnuts, and organic kefir.

Good News Again

Mayo Clinic Visit Wednesday, April 2, 2009, end of Cycle 14:

Results:

M-Spike is the same at 0.9 g/dL, IgG is up slightly from 923 to 1060 mg/dL, and Lambda light chains are also up a little from 2.64 to 3.04 mg/dL. I'm not concerned about IgG & light chains, because those numbers do seem to fluctuate a bit from one cycle to the next, as does the M-Spike for that matter. Taking the long view, these major markers have been level or down since June, 2008, and the trend is pretty much level. This is great, and Hooray for modern science!

CC-4047 is an experimental drug, an analog of Thalidomide and Revlimid but apparently more potent and with fewer side effects. In early March, a year ago, I started on the Mayo trial of CC-4047 with dexamethasone (DEX). By June, M-Spike dropped dramatically from 2.7 down to 1.1 g/dL. From there it dropped to 0.9, then up again to 1.1, and back down. Those variations may not have any meaning, and in fact they may be within the measurement error of the tests. Eventually the treatment will probably fail, as they tend to do, only time will tell. Meantime, there is life to be lived.

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		Best with a wide browser window. Very "technical."

Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post.

Here are a few specific test results:

Test		Jan 08		Feb 05		Mar 04		Apr 02		Remarks
M-spike g/dL		1.1		1.0		0.9		0.9		Best tumor measure
IgG mg/dL		1350		1160		923		1060		Variation is normal
L FLC mg/dL		3.31		2.78		2.64		3.04		Free light chains
Calcium mg/dL		9.9		9.7		9.7		9.5		Below 10.2 is best
Creat mg/dL		1.1		1.0		1.0		1.0		Kidney, lower is better
HGB g/dL		15.3		14.9		13.7		14.7		Hemoglobin, normal
RBC M/uL		4.36		4.28		3.89		4.26		Red cell count, low
WBC K/uL		4.6		5.0		4.5		4.2		White cells, normal

Doctor:

I met again with the nurse-practitioner Dr KDS, but our discussions were short this time. She did give me a prescription for physical therapy designed to strenthen the bones that were known to be threatened by myeloma lesions a year ago. I have previously discussed this with a personal trainer and had one session with her, but will now make an appointment with a physical therapist. Perhaps I'll learn a set of exercises that I will actually do on a regular basis.



Hormone- and antibiotic-free lamb, organic broccoli with shredded parmesan cheese, onion, Rose's lime jelly.

Eat Dirt!

Actually.

I was in the office of a naturopath yesterday and heard her recommend Terramin for rebuilding injured bone. I'm having some trouble locating a really good reference for this, but the rumor is that NASA funded a study back in the 1960s showing that Terramin (calcium montmorillonite) might help astronauts avoid bone loss in weightlessness, whereas calcium alone did not seem to help. I've located a reference to animal studies which seem to demonstrate the point.

I have no injured bones, but the absolute density of the bone in my femurs has declined from about 0.96 to about 0.89 grams per square cm in the three years from 2004 to 2007. Technically I'm in osteopenia, the stage before osteoporosis. Neither my oncologist nor my primary physician is particularly concerned about this decline, however, and neither wants to prescribe a bisphosphonate (e.g. Fosamax). Nevertheless I would like to halt the decline if possible. I have been taking 1200 mg of calcium in the form of calcium citrate fairly regularly during those years, so something different is required.

Thus I bought some Terramin. It's dirt that you can eat, from the desert of California. The claims are many: Body cleansing, trace minerals, bio-available calcium, on and on. There's plenty of hype here. I'm a skeptic, but in the spirit of doing all that I can, I'm actually eating a heaping teaspoon of dirt every day. Well, for the last two days, but I expect to continue this until the next bone density measurement, unless persuaded otherwise.

So far I have taken the dirt in juice. I put several ounces of pomegranite juice in an eight-ounce glass, mix in a heaping teaspoon of Terramin, then fill to the top with sparkling water. The dirt is a very fine powder which mixes well in water, but is nonetheless gritty in the teeth. I need to swish with water (beer is better) after taking this stuff, or eat something. It says take it on an empty stomach, but I can't imagine what difference that would make so I'll take it in whatever manner is least objectionable.

So that's the dirt from Lake Woebegone.

Merry Christmas and Happy New Year to all!