Better Than Plateau
Mayo Clinic Visit Wednesday, March 4, 2009, end of Cycle 13:
A month ago, at the end of Cycle 12, M-Spike went down from 1.1 g/dL to 1.0 This month it went down again, to 0.9 g/dL, for a total drop over two cycles of 18%. Further, in that two-month period, IgG dropped from 1350 to 923, a total drop of 32%, suggesting that the M-Spike drop is not only genuine but perhaps even understated. Celebration is in order.
CC-4047 is an experimental drug by Celgene, an analog of Thalidomide and Revlimid but hopefully more potent and with fewer side effects. Exactly a year ago I started on the Mayo trial of the drug combination CC-4047 with dexamethasone (DEX). M-Spike dropped dramatically from 2.7 g/dL down to a low of 0.9 g/dL last October, the best value in more than four years, then climbed back up to 1.1. Now in two 28-day cycles it has retreated again to 0.9.
So after it went up again, why did it go back down? What is different? Is it something that I did? If so, what can I do, with the help of Sunshine and Sweet Pea, to keep M-Spike going right on down? Here are a few possibilities:
Other Good News:
- In Cycle 13 I had a perfect record of taking my supplements, twice a day. Never missed once. Maybe they actually do help? The only problem with this theory is that I wasn't nearly as consistent in the previous cycle, number 12, when M-Spike also went down.
- For this Cycle 13, I added three new items to the list of supplements:
- Genistein, a soy isoflavone which is reputed to have some anti-myeloma benefits, see for example Margaret's Corner;
- Spectra 303, a thyroid supplement; and
- Thyroid Energy by Now, another thyroid supplement.
- I'm thinking that if anything helped M-Spike it was the genistein, though the thyroid marker TSH did improve too and who knows if a healthier thyroid could benefit M-Spike. Neither would explain why Cycle 12 also showed improvement.
- During Cycle 13 I ate more grapefruit than I had been eating. Grapefruit is known to enhance the effect of some drugs by interfering with the normal action of digestive enzymes. Usually I ate the grapefruit in the evening, an hour or two before taking the CC-4047, and it's certainly possible that this resulted in more CC-4047 in the blood. But again, it doesn't explain why Cycle 12 also showed improvement.
- In the past two months Sunshine has been cooking with more coconut oil than she ever used before. Every morning I have two eggs cooked in a little coconut oil, for example. Popcorn, when we have it, is popped in coconut oil, and other foods are cooked in it as well. Coconut oil is well regarded as a traditional treatment for shingles and other forms of the herpes virus, but I haven't heard of it as a treatment for myeloma. Nevertheless it is a change in our lifestyle that occurred at about the beginning of Cycle 12.
- According to Dr L, the side effects of DEX tend to increase as time goes by, which is one reason why a doctor may reduce the dosage. My dosage started at 40 mg once weekly and was gradually reduced, ending up at 8 mg once weekly last November, for Cycle 10, where it has remained. Question: If the side effects of DEX increase with time, does the efficacy increase as well? Dr KDS didn't know, so I will ask Dr L when I next see her.
- For each of the Mayo visits, we travel from the Minneapolis / St Paul area to Rochester, MN. Usually we get up very early and drive about 90 minutes in the dark for a 6:30 am blood draw. I'm not supposed to have any food or drink, except a little water, for 12 hours before the blood draw. However, for the last two visits, and only those two, with the permission of Dr L, I have enjoyed a 16-ounce thermos of black coffee on that drive. Could it be that the coffee is somehow interfering with the tests, and the cancer markers haven't really changed? I don't think so, because M-Spike and IgG have dropped for two cycles in a row, but it's a thought. I'll enjoy my thermos again next month and see what happens.
Two days before the Mayo appointment I injured my back slightly while doing pushups I think. Or pullups. That's not the good news. Dr KDS and Dr L agreed that I should have another x-ray bone survey, to include that area of the back but also all of the large bones in the body, because:
The good news is that the bone survey was negative. No lucent lesions. The injury is minor - I'm sure it will be gone soon.
- A year ago, lesions were found in three bones including a vertebra;
- I'd had no x-rays or bone scans since;
- Myeloma always poses a risk for bone lesions and actual broken bones; and
- I had a symptom that could indicate a problem in a vertebra.
Side effects of the two key drugs, CC-4047 and dexamethasone, are discussed in a previous post.
Here are a few specific test results:
|M-spike g/dL|| || 1.0|| || 1.1|| || 1.0|| || 0.9|| ||Best tumor measure|
|IgG mg/dL|| ||1260|| ||1350|| ||1160|| || 923|| ||Variation is normal|
|L FLC mg/dL|| ||4.03|| ||3.31|| ||2.78|| ||2.64|| ||Free light chains|
|Calcium mg/dL|| ||10.1|| || 9.9|| || 9.7|| || 9.7|| ||Below 10.2 is best|
|Creat mg/dL|| || 1.0|| || 1.1|| || 1.0|| || 1.0|| ||Kidney, lower is better|
|HGB g/dL|| ||14.6|| ||15.3|| ||14.9|| ||13.7|| ||Hemoglobin, normal|
|RBC M/uL|| ||4.20|| ||4.36|| ||4.28|| ||3.89|| ||Red cell count, low|
|WBC K/uL|| || 5.3|| || 4.6|| || 5.0|| || 4.5|| ||White cells, normal|
I met again with the nurse-practitioner Dr KDS. Here is some of the discussion:
- My M-Spike has declined on the test protocol from 2.7 g/dL to 0.9 g/dL. Tha's called a "partial response (PR)." To get to the next level, "very good partial response (VGPR)," it would have to get down to less than 10% of the initial value, or 0.2 g/dL. Well, I'm going to define my own level, called "good response (GR)," which is less than 40% of the initial value. I'm there.
- Last month my TSH, a thyroid marker, was 5.4, slightly above the reference range. Since then I have been taking some over-the-counter thyroid supplements, and this time TSH was 3.5, somewhat better. I'll keep taking them.
- Anakinra (Kineret) is an existing FDA-approved drug which has shown an ability to inhibit the growth of myeloma. It is currently in an ongoing Phase II trial for patients with smoldering myeloma.
- There are ongoing studies of three- and four-drug combinations which seem to have spectacular results, similar to the results from a stem cell transplant, sometimes even better. But the question is, what happens when the myeloma comes back, and we've already shot the whole quiver of arrows at it? Dr KDS says that there is no clear answer yet, and the issue is hotly debated, but she articulated three possibilities:
- Do it again, the same combination of drugs or another combination. Maybe it will work; or
- Try the individual drugs, one or two at a time, likely in greater doses than they were used when in combination; or
- Perhaps by then a new drug or combination will be available. Time and research are our friends.
- IgG measures all immunoglobulin G, M-Spike measures the monoclonal (bad) part of that, and the difference is good immunoglobulins which can fight infection. For example, the most recent results show IgG = 923 mg/dL, M-Spike = 900 mg/dL (same as 0.9 g/dL), so the difference is 23 mg/dL good stuff. Before I went to Mayo, my tests were done at Minnesota Oncology Hematology PA (MOHPA).
Why such a big discrepancy in "good stuff" between MOHPA and MAYO? I'm pretty sure that it is a discrepancy in laboratories and not an artifact of the CC-4047 treatment, because the "good stuff" at Mayo was only 260 at my very first Mayo visit, before any CC-4047. Mayo reads M-Spike higher than MOHPA does. Of course I have no idea which lab is correct. Dr KDS agreed that such a discrepancy could exist, though it seems like rather a large difference.
- For 15 sets of tests at MOHPA, the difference between IgG and M-Spike (good stuff) averaged 690 mg/dL.
- For the next set of 14 tests, all at Mayo, the difference averaged 212 mg/dL.
- I asked her if there might be a way to kill all memory B cells, or even all B cells, on the assumption that these contain the "stem cells" that cause myeloma to return. Sort of a plasma-cell reboot, but less than a complete stem cell transplant. A new experimental drug called belimumab is a possibility here, but she hadn't heard of it and the whole concept is well over my head.
- We re-discussed last month's ECG report of "ventricular escape beat with SVPC." On the internet it looks kind of scary. But she looked it up on a Mayo data base and found that it is not uncommon in people with otherwise low heart rates. That's me. I won't worry about it - there will be another ECG in a couple of months and I'll arrange to be less-well caffeinated for it.