Sunday, August 24, 2008

Mayo Clinic Visit Aug 22

We celebrate the end of cycle six of the phase-II trial of the new drug CC-4047 with dexamethasone (dex). The first three monthly cycles brought very good results, then the fourth and fifth cycles not so much, but this sixth cycle seems to point to a continuing gradual decline in tumor burden. My two primary markers are IgG and M-spike. In this sixth cycle:
  • IgG dropped 23%, from 1360 down to 1040 mg/dL, lower than it has ever been before in five years of watching it. IgG does bounce around, though, as the immunoglobulins respond to internal bacterial and viral infections, so it could pop back up again in a month. Or not.
  • M-spike went down 9%, from 1.1 to 1.0 g/dL. 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. The ideal (and normal) value is zero.
The good news is:
  1. The cancer does seem to be declining, if rather slowly, and
  2. There really isn't any bad news.
  3. Life is great!
Dr. L took my blood pressure two different ways and got numbers close to 150/80 each time, higher readings than I have ever had before. Ever. Maybe that's the bad news. I'm not too worried yet, though, because I have recently had very normal blood pressure readings too. Shouldn't my blood pressure be a bit high when visiting my oncologist? Yes, but maybe not in this case because she had already told me that the tumor burden seems to be going down.

Regardless, Dr. L knows that dexamethasone can cause high blood pressure, and is aware of the risks that it brings. She is concerned enough that she has reduced my weekly dose of dex from 20 mg to 12 mg. This does NOT displease me! I hate dex - I just ran a half marathon race ten minutes slower than one I ran in May, and I attribute most of the loss of speed to dex. I wonder what else it's doing to my body. Of course I hope that the reduction in dex will not significantly reduce the efficacy of the treatment.

We will continue with 2 mg of CC-4047 daily and 12 mg DEX once weekly for the seventh 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 dex, are discussed in a previous post.

Other subjects that came up:
  • Some people take their dexamethasone in the morning and some take it in the evening, so I asked if there is any difference in efficacy. Dr L said not, but there may be a difference in side effects, especially regarding sleep. Since I am not having much problem sleeping, I will continue to take it with dinner.
  • I asked if normal plasma cells can replicate themselves. Dr L said that they do not replicate directly, but through progenitors called "memory B cells." These are the same cells that some researchers suspect of going wacko (technical term) and creating defective plasma (myeloma) cells in great quantity. These progenitor cells are also resistant to the usual treatments, like CC-4047 and dex, which may be why myeloma always comes back. Researchers are actively working on ways to eliminate the wacko progenitor cells.
  • The treatment is reducing my markers rather slowly, so I asked if that predicted a poor outcome. She said that it may be just the opposite - that a fast treatment response can be followed by a fast return of the cancer, and that a slow response like mine is consistent with other indicators suggesting that my cancer moves slowly. She also said that a slow but consistent downward trend in markers is often seen in people taking Revlimid and CC-4047.
  • I was initially diagnosed with "light chain-disease" five years ago, so I asked Dr L if I really do have light-chain disease. She preferred the term "light-chain deposition disease," and said that I do not have it. Apparently I have a rather garden-variety myeloma with an incidental, minor secretion of lambda light chains. In other words the myeloma cells themselves are the problem, not the the light chains, and that's actually a good thing.
Here are a few specific test results:

Test   May 29   Jun 26   Jul 24   Aug 22    Remarks
IgG mg/dL 1260 1450 1330 1040 Variation is normal
M-spike g/dL 1.2 1.1 1.1 1.0 Best tumor measure
L FLC mg/dL 4.25 4.03 3.30 3.57 Down is best
Calcium mg/dL 9.7 10.1 9.7 9.3 Below 1.2 is best
Creat mg/dL 1.1 1.0 1.0 1.3 Kidney, lower is better
HGB g/dL 14.5 14.8 14.3 13.8 Hemoglobin, a bit low
RBC M/uL 4.23 4.28 4.17 3.99 Red cell count, low

I'm no longer concerned about lambda free light chains (L FLC). Calcium is dandy. Creatinine is up, but it has been this high in the past. Hemoglobin and red blood cell count are down, but they have been lower. Albumin (liver function, not shown) is normal.

I feel so very lucky, still able to finish a half marathon when I know so many myelomiacs who could not. Live one day at a time and make it a masterpiece!

Dinner 1   Dinner 1: Wild-caught sole pan-fried with ancho pepper, organic broccoli with parmesan cheese, organic nectarine, organic lime.
Dinner 2: Grass-fed free-range beef, organic plum, organic broccoli with parmesan cheese.   Dinner 2
Dinner 3   Dinner 3: Free-range grass-fed chicken breast, vidalia onion, organic nectarine, vegetable quiche with organic baby spinach, organic tomato, vidalia onion, parmesan cheese, organic egg.

Friday, August 1, 2008

Naturopath Visit

Sunshine and I went to see the naturopath Dr HH last Thursday, with two major issues:

Stable Disease Despite Treatment:

My IgG and M-Spike have been almost level for two months now, even though I have been on the drug trial which includes CC-4047 and dexamethasone (dex). So what can I do to change things, to make the drugs work better? Discussion:
  • Dr HH started by suggesting "proteolytic enzymes," which in some studies have significantly improved the outcomes of chemotherapy. Here is one example (read down the page a ways). I've already started taking the enzymes between meals.
  • In addition, she suggested that I eat more meat! Naturopaths tend to lean toward the vegetarian end of the chow spectrum, so she admitted that this was strange for her, but she thinks I might benefit from red meat: beef, lamb, bison, mutton, venison, salmon, and perhaps not so much chicken as I eat now. Huh. We originally cut back on meat to reduce inflammation, but my inflammation markers are quite low, so I'm up for this change.
  • I am currently taking reishi mushroom, and Dr HH suggested a more potent variety known as AHCC (Active Hexose Correlated Compound). I will order some. Naturally, it's quite a LOT more expensive than the reishi.
  • Myeloma is not just any cancer - it is a cancer OF the immune system. Therefore, we always have before us the question: "Should we do things that are intended to bolster the immune system, or should we not?" I asked her to go through the list of supplements that I have been taking, with an eye toward eliminating any that may not seem necessary, and especially any that are only intended to boost the immune system in non-specific ways. We struck several off the list. In particular, we eliminated:
    • Coenzyme Q-10, of all things. Co-Q10 supports mitochondrial function, and is thought to be a very good supplement, but it's possible that the mechanism by which CC-4047 kills naughty plasma cells may involve interfering with mitochondrial function. If so, then Co-Q10 could be working against the CC-4047. I'm in way over my head here, but for at least a month I'm going to cut back on C0-Q10.
    • Borage Oil. I ran across one obscure reference suggesting that borage oil can decrease NK cell activity, which is probably not good. His claims are unsubstantiated, but for now, I'll stop it.
    • Others. The link to the right labeled My Supplement Regimen shows the old list with several supplements crossed out.
Mitigation of Damage from Dexamethasone:

Dexamethasone is an important part of the treatment, but it does have significant side effects. It can cause muscle wasting and accumulation of fat around the stomach, and it causes insulin resistance very much like that of a diabetic. In fact, it can make a person a diabetic. Bad stuff, and oncologists may not have much advice to offer about reducing side effects. Discussion:
  • Carbohydrates are not good on dex days, because they change to glucose and the dexamethasone interferes with "glucose transport." This prevents the organs and muscles from absorbing glucose, resulting in fat buildup instead. Something similar happens to ingested fat. This leaves protein as the preferred nutrient, which does fit well with the new higher-meat diet. So the plan is to reduce carbs and fat on "dex days" (the two days after taking dex), and eat plenty of protein, but reduce total calories to prevent fat accumulation. Anyway, that's the plan.
  • Add a chromium supplement, because chromium can improve glucose transport. Up to as much as 1000 micrograms per day. And hope that the mechanism by which dex kills myeloma plasma cells is NOT by interfering with glucose transport to those cells. Yikes.
  • On dex days, aerobic exercise is difficult because the muscles run out of glycogen and cannot easily replenish it. Dr HH suggested doing resistance training on those days instead, because that will not significantly depelete glycogen stores but will nevertheless teach muscles to build themselves instead of growing smaller.
The idea is to shake things up and try to create movement in the M-spike and IgG. Hopefully that movement would be down, but either way we would learn something.

Dinner: Organic chicken w ancho pepper, vegetable curry with organic sweet potato, organic zucchini, organic carrots, organic chard, onions, and organic strawberries.