Friday, July 25, 2008

Glass Half Full

In early March I joined a phase-2 trial (study) of Celgene's new IMiD drug CC-4047, with once-weekly dexamethasone. The first three one-month cycles brought very good results, each with approximately a 25% reduction in markers, but the fourth and fifth cycles have been less spectacular. My two primary markers are IgG and M-spike:
  • IgG actually went up 15% in the fourth cycle, then down half of that difference in the fifth to a value of 1360 mg/dL. IgG does bounce around, though, as it responds to internal bacterial and viral infections, so the meaning is not clear.
  • M-spike went down from 1.2 to 1.1 g/dL in the fourth cycle, then stayed at 1.1 in the fifth. It is the best measure of monoclonal protein, which in turn is the best measure of total tumor burden other than a bone marrow biopsy (ouch), but it may only be repeatable to 5% or 10%. Zero is the ideal value. Lambda free light chains are down 22% over the two months, which must be a good thing. They can be another measure of tumor burden for some people, though we haven't been focusing on them in my case.
So the bad news is that there is no change, at least none for sure. The good news is that there is no indication at all that the tumor burden is climbing again, as it had at every test for the previous five years. More important, IgG is in a "normal" range and M-Spike is at a value last seen three years ago. I hope for more improvement, but if none comes I'm still far better off than before I started on the drug trial. Life is great!

We will continue with 2 mg of CC-4047 daily and 20 mg DEX once weekly for the sixth cycle. Here are some 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 drugs, CC-4047 and dexamethasone (DEX), are described in a previous post.

Other things that came up:
  • Much of the appointment this time was handled by KD, a certified nurse practitioner, who asked most of the questions and actually performed the hands-on part of the checkup. Evidently this will be the new normal, with KD or Dr L checking me out on alternate months. This time Dr L did come in for a while, to answer my little list of questions, and I don't know if that is part of the new normal.
  • I asked if there was any resource to get advice about mitigating the effects of dexamethasone, and Dr L wasn't aware of any. Just exercise and a high-protein diet. Guess it's up to me to find or create the resource.
  • HHV-8 was discussed at length in some blog comments (see earlier post). Dr L said that there was a time when some doctors were quite excited about a perceived link between myeloma and HHV-8, but since that time no one has been able to reproduce their results.
  • Lipids - we checked mine for the first time in many years: Total cholesterol 168, HDL 42, LDL 109, triglycerides 83. I'd like the HDL to be a tad higher and LDL a bit lower, but I'll take it.
Here are a few specific test results:

Test   May 29     Jun 26     Jul 24     Remarks
IgG mg/dL 1260 1450 1330 Some variation is normal
M-spike g/dL 1.2 1.1 1.1 Best tumor measure
L FLC mg/dL 4.25 4.03 3.30 Down is good
Calcium mg/dL 9.7 10.1 9.7 Below 1.2 is best
Creat mg/dL 1.1 1.0 1.0 Liver function, low is better

Breakfast Post-run breakfast: Gluten-free oatmeal with organic flame raisins and dried cranberries, blueberries, organic apricot, organic walnuts, mango, papaya, dark chocolate, organic pomegranate juice, organic nonfat milk.
Dex lunch, low carbs and high protein: Organic pork chop, organic broccoli with shredded parmesan cheese, organic cherries.Lunch
DinnerDinner: Organic chicken with onions and brown rice, organic nectarine, organic mixed vegetables with shredded parmesan cheese.

Sunday, July 6, 2008

Cool Calendar Program

We recently discovered a nice calendar program called Mozilla Sunbird. If you are interested, here is a post about it.