Saturday, May 2, 2009

Even Better News, Probably

Mayo Clinic Visit Wednesday, April 30, 2009, end of Cycle 15:


CC-4047 is an analog of thalidomide and Revlimid, presumably an advancement on both. One little-advertised feature of Revlimid is that a patient's M-spike may decline in two phases. The first phase may take the spike down to a plateau, and if there is a second phase it may produce another gradual decline to even lower numbers, possibly much lower. Dr L has a theory that the first phase may be the Revlimid actually killing the naughty plasma cells, as we might expect, and the second may happen because the Revlimid has helped the immune system itself to fight the myeloma.

The good news for me, perhaps, is that CC-4047 seems to show the same two-phase response for some patients, maybe including me. The CC-4047 study is less than a year and a half old, so information is still somewhat tentative. My own M-spike initially dropped rather quickly from 2.7 to 1.1 g/dL, then to 0.9 and back up to 1.1. In the past four cycles, though, it has gradually dropped again, from 1.1 down to 0.8 g/dL, the lowest level we have seen in the fifteen 28-day cycles that I have been on the study. I can only hope that this is the beginning of the second gradual downward movement.

IgG stayed the same, at 1060 mg/dL, suggesting that the drop in M-spike might be illusory. M-spike is known to be a relatively inaccurate measurement, and indeed the the printout says "no significant change since the last measurement," even though it dropped from 0.9 to 0.8 g/dL. However, since January the drop is from 1.1 to 0.8, enough to be significant. The trend is certainly down, not up.

The only iffy test results are the white blood cell and neutrophil counts, both of which took a bit of a dip this month. CC-4047 can cause those counts to tank, which is not good. But they bounce around a bit and have been low before, so we'll see next month. We live month to month, and I'll take this one!

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 Feb 05    Mar 04    Apr 02    Apr 30    Remarks
M-spike g/dL 1.0 0.9 0.9 0.8 Best tumor measure
IgG mg/dL 1160 923 1060 1060 Variation is normal
L FLC mg/dL 2.78 2.64 3.04 2.55 Free light chains
Calcium mg/dL 9.7 9.7 9.5 9.6 Below 10.2 is best
Creat mg/dL 1.0 1.0 1.0 0.9 Kidney, lower is better
HGB g/dL 14.9 13.7 14.7 14.3 Hemoglobin, normal
RBC M/uL 4.28 3.89 4.26 4.01 Red cell count, low
WBC K/uL 5.0 4.5 4.2 3.6 White cells, normal


Sunshine and I discussed a few other things with Dr L:
  • It seems as if the dexamethasone (DEX) had aged me five or ten years in the last year, noting especially the thinning skin and wasting muscle. Dr L was not surprised.
  • It also seems like there are two DEX days now, not just one. The DEX effect seems to last longer. Again she was not surprised.
  • She had mentioned in an earlier visit that the body does become more sensitive to the DEX as time passes. This time she said that this unfortunately applies only to the side effects and not to the efficacy of the drug.
  • When I asked about the effect of the drugs on the thyroid, she mentioned that the IMiD drugs (thalidomide, Revlimid, and probably CC-4047) can sometimes inflame the thyroid, and in the worst case can cause the thyroid to "burn out," eventually resulting in hypothyroidism. This is why the CC-4047 study protocol calls for a TSH test every three cycles, which is frequent enough to catch the problem. My TSH was 2.0 mIU/L, which is fine.
  • We discussed a reduction in the DEX dosage, from 8 mg to 4 mg once weekly, but because of the good M-spike result we decided to change nothing. I love life more than I hate DEX.
  • I have eaten one grapefruit every day since about January, which is roughly when this M-spike decline began. Coincidence? She was not certain whether grapefruit would have an effect on the strength or efficacy of either the DEX or the CC-4047. But I'm not inclined to change that either.
  • Don's basic rule of life: "If it works, YOU CAN'T FIX IT." Corrolary: "So don't try."
  • We had quite a discussion about the shingles vaccine. It is a "live" vaccine, so there is a theoretical possibility that it could actually cause a case of chicken pox in an adult with a compromised immune system. That could be horrible and maybe even fatal, so oncologists simply don't give that vaccine to people with myeloma and there is almost no clinical information on whether myeloma patients would actually develop chicken pox from the vaccine.
  • My primary care physician, Dr PCP, had suggested the vaccine and he's a very smart man, so I'm still thinking about it. As far as I know, my immune system is as competent as it has ever been. If it's safe for normal adults, it should be safe for me. Shingles is pretty nasty too.
  • In February the electrocardiogram (ECG) report said "Ventricular escape beat followed by SVPC." I'm not even sure what that means - I hope it was just because I have a runner's heart and I was on a lot of caffeine that day. Anyway it wasn't there this time.
  • But this time the report says "minimal voltage criteria for LVH, may be normal variant." This same statement appeared once before too, about a year ago. I think it's the measure of the height of the major voltage spike on the ECG. Dr L said that the voltage can show higher on lean people (like runners), and I also think it has to be higher for a person with a very low heart rate, because the heart has to pump harder on each beat. A normal heart rate is 60 or so, but mine was 40 for that ECG - normal for me because I'm a runner. I'll ask Dr PCP about this.
  • We talked briefly about new drugs. She mentioned a drug called Zevalin, a monoclonal antibody with the capacity to kill the progenitor cells ("stem cells"), perhaps to be used in combination with melphalan which kills the mature myeloma cells. Apparently someone at Mayo is doing work on this. If this were successful, we might actually be headed for a cure. Yikes.
  • The CC-4047 study has been reopened more than once now for a modest number of additional patients. The last opening, now filled, was for people for whom Revlimid has failed. This time it is for people for whom both Revlimid and Velcade have failed. Apparently the FDA does not want to approve another new drug unless it shows a significant advantage over drugs already available. If CC-4047 works for those hard-to-treat patients, it will certainly show that.
  • I asked if the muscle wasting caused by DEX would affect my heart as much as it affects leg muscle. She thought not, because the heart is "smooth" muscle, different from motor muscles.
Three days before the Mayo visit I saw Dr PCP with a lits of questions about DEX and a few other things:
  • I asked if there was a way to minimize the muscle-wasting effect of DEX by timing my running and other exercise properly. Is it best to exercise on DEX day, or is it best on the day before or the day after? He didn't know, but will look into it. Good guy.
  • He mentioned that immunizations, such as the flu shot, are rendered less effective by DEX, which suppresses the immune system and thereby its response to the vaccine. He thought perhaps the best timing for that would be two days after taking the DEX.
  • The reason that DEX is used for us instead of prednisone is that there is less problem withdrawing from DEX, so it's better in applications where the corticosteroid should be pulsed instead of continuous.
  • He knows of no way to toughen thin skin. Tsk.
The end. For now.

Click to make it a larger meal
Dinner: Wild-caught Alaskan sockeye salmon (canned) with organic yogurt and a little cheese, toasted slivered almonds, organic green peas, organic strawberries. Life is good.

1 comment:

  1. sorry to tell you stewart asquiths died on 13 april. his death was in the scotsman paper