Saturday, February 7, 2009

Plateau Continued

Mayo Clinic Visit Thursday, February 5, 2009, Cycle 12:

Good News!

M-Spike went down from 1.1 to 1.0 g/dL and IgG from 1350 to 1160 mg/dL. Together, these results seem to indicate an actual drop in tumor burden of perhaps 10% or so. Maybe not, because test results can vary, but most likely the cancer is down. We celebrated last night.

I do wonder WHY it's down, though. I'm still taking CC-4047 2 mg daily and dexamethasone (DEX) 8 mg once weekly. What else was different in this last month? Or was it the previous month that was different, when it seemed to go up? I dunno. Anyway we'll take it! Thanks to Celgene for CC-4047, Mayo Clinic for excellence in medicine, and specifically to Doctors L and KDS.

Other test results were mostly good too, and in fact mostly unchanged. Light chains are down a little, but the ratio is basically unchanged. White counts and hemoglobin are within the reference range for "normal" people. Red cell count is at the bottom edge of the range, where it always is. I do have three little things to whine about, but I'll put those last because they don't seem very important.

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 Nov 13    Dec 11    Jan 08    Feb 05    Remarks
M-spike g/dL 1.0 1.0 1.1 1.0 Best tumor measure
IgG mg/dL 1170 1260 1350 1160 Variation is normal
L FLC mg/dL 3.25 4.03 3.31 2.78 Free light chains
Calcium mg/dL 9.8 10.1 9.9 9.7 Below 10.2 is best
Creat mg/dL 0.9 1.0 1.1 1.0 Kidney, lower is better
HGB g/dL 14.6 14.6 15.3 14.9 Hemoglobin, normal
RBC M/uL 4.19 4.20 4.36 4.28 Red cell count, low
WBC K/uL 4.3 5.3 4.6 5.0 White cells, normal


I met again with the nurse-practitioner Dr KDS. Here is some of the discussion:
  • In connection with my "plateau," Dr KDS mentioned the concept of managing myeloma as a chronic disease rather than a fatal one. But we both know that it's too soon to say that - people are still dying every day.
  • I asked Dr KDS about the effect of DEX on the thyroid. She wasn't aware of any effect.
  • In a recent visit, my naturopath raised the subject of chronotherapy, also called chrono-modulated therapy, in which the chemo is administered at the time of day that takes advantage of a person's biorhythms to maximize the benefit and minimize the side effects of the drug. Dr KDS thought that it doesn't much matter for the CC-4047. She said that the effect of the DEX peaks 8 to 14 hours after it is taken, so a person should determine for him/herself when s/he wants that to happen. Most people like to take it in the evening, so that the effect is maximized during the following day.
  • Since both CC-4047 and DEX have a half-life in the body of eight hours or less, I think (based upon my extensive medical knowledge - Ha ha) that there IS likely a time of day when each of those would be most effective. I wonder when that is.
  • We have no Phase II data on length of the plateau for CC-4047, so I asked about Revlimid, a similar drug, in comparison with thalidomide. She made a call and reported that the median "time to progression" for Revlimid is about 30 months, much more than thalidomide. Some people are at 50 cycles and still going on Revlimid. We can hope that CC-4047 gives a plateau of that quality.
  • I asked about the targeted measles therapy project, and she said that it is currently in a second Phase I trial with real patients.
  • Dr L had said that people get more sensitive to DEX as time goes by. I asked if that applied to the benefits of DEX, or only the side effects. Dr KDS wasn't sure.
  • The next visit will be almost exactly one year from my first tests at Mayo. I asked if there is any set of tests that are done on an annual basis, such as skeletal survey, bone density measurement, or PET scan. She said not unless there is a symptom that suggests a need for the test.
  • See, the problem is that people cruise along thinking they are on a plateau and suddenly a bone breaks. Yikes. That has happened to many of the people in my local support group. If it happened to me, almost any broken bone would stop my running, so my lifestyle would change instantly and dramatically. For anyone, including me, shouldn't we find a way to spot a weak bone and treat more aggressively before a break occurs?
  • As part of the study protocol, Mayo does an electrocardiogram every three cycles, and did one Thursday. The doctor always reports "bradycardia," a slow heart rate, which we know about. Runners have strong heart muscles and low heart rates. This time, though, we also got this report: "Ventricular escape beat and SVPC are now present." I don't know what that means, and it doesn't sound good, but Dr KDS wasn't worried about it. I suspect that it was due to being overcaffeinated for the ECG. Dr KDS didn't disagree. Coffee AFTER the ECG next time.
  • My TSH (thyroid marker) was 5.4, just above the reference range of 0.3 to 5.0, suggesting that I may be hypothyroid. Hmmm. They do this test every three months too, and it has bounced around a bit in the past year. I will self-treat for this in the next three months, using supplements recommended by my naturopath, and we will see if it drops. I'd prefer it to be down around 2.0.
  • After my run Thursday my right foot felt like it was waking from being "asleep," a bit prickly and cool. This lasted for several hours, and could be the beginning of peripheral neuropathy, which can be caused by drugs like CC-4047. I have felt this before when I was taking thalidomide, a similar drug. In all cases it was triggered by running and it disappeared in a few hours. We'll see - if it's peripheral neuropathy it will be back.
M-Spike Versus IgG (or IgA):

M-Spike (Spike) and IgG both measure immunoglobulin G, which is one of the proteins that our bodies make to fight off infection. Spike measures the useless, monoclonal immunoglobulin made by the malignant plasma cells, whereas IgG measures BOTH the useless monoclonal immunoglobulin and the GOOD useful immunoglobulins that fight infection, made by the normal plasma cells. In United States labs, Spike is usually expressed in grams per deciliter (g/dL), whereas IgG is expressed in milligrams per deciliter (mg/dL). We can put them in the same units, mg/dL, by multiplying Spike by 1000. Example from Thursday's results: Spike is 1.0 g/dL, which is the same as 1000 mg/dL. Subtracting that from the IgG of 1160 mg/dL, we see that the GOOD immunoglobulins (IgG - Spike) are 160 mg/dL. Note that IgG must always be greater than Spike, or something is wrong. It can be quite a lot greater if the body has recently fought an infection. The measurement of IgG is more accurate than Spike, but is harder to apply as a cancer marker because the amount of good IgG is unknown. The analysis is exactly the same for IgA myeloma.

For my own amusement I plotted IgG and Spike on the same scale (Spike converted to mg/dL) going back five and a half years. You can see that Spike is always lower than IgG, though the difference has shrunk a lot in the last year since the beginning of the CC-4047 trial. I'll have to ask Dr L why that is:

Click to enlarge, BACK to return here

Friday, February 6, 2009


Quick update:

I visited Mayo Clinic yesterday (Thursday) at the end of my 12th cycle on the trial drug CC-4047 with dexamethasone. Bottom line: M-Spike went down from 1.1 to 1.0 g/dL. In addition, IgG dropped from 1350 to 1160 mg/dL, strongly suggesting that the decrease is real and not just a testing anomaly.

The doctor used the work "plateau," and pointed out that the M-Spike hasn't really increased since last August, when it was lower than it had been in the previous three years. She even referred to the possible management of myeloma as a chronic illness rather than a fatal one, though we agreed that we don't yet know if that is appropriate in my case.

More information coming soon, in exhausting detail as always :-)