Humpf!

Disappointing Test Results.

Last October my new "everything including the kitchen sink" self-treatment regimen seemed to be producing results, with a significant reduction in IgG from September to October, and a slight reduction in "spike."

Yesterday I received the results from the last nine weeks on the regimen, and those results are not as encouraging:

• IgG up 11.5% to 3000 mg/dL, near the high September level,
• SPEP monoclonal protein (SPEP) is up 11% to 2.05 g/dL, an all-time high, and
• For the first time ever, slight amounts of lambda light chains were found in my urine.

I hoped and almost expected those numbers to go down, not up, so this is a disappointment.

However, the news is not all bad. I have a beer here, but I'm not crying in it :-) Calcium remains low, as does creatinine, both of which are indicators that the myeloma is not yet hurting me. Red cell count is still slightly below the normal range, but up a little from October, and it has always been low. Hemoglobin is fine, as are all the rest of my CBC values. I have none of the C.R.A.B. symptoms. Graphic charts of key test results are here and a huge table with lots more test results is here.

When I look at the charts, it appears to me that even if the myeloma is still increasing despite the kitchen-sink regimen, the increase may have slowed. Two data points are not enough to make this trend clear, but it's a hopeful thought and we live in a world of hope.

My oncologist wants me to start a new regimen of Revlimid and dexamethasone (dex). He suggested a rather high dose to start, in fact, 40mg Rev for 21 days of 28 (if I recall correctly - possibly it was 25mg), and 40mg dex four days on and three off. We discussed the results of the ECOG study which showed that low-dose dex was better in every way than high-dose dex. I declined treatment for now, and told him that I will go to Mayo Clinic in Rochester for a consult. He accepted this very openly, and said that he will be glad to continue to work with me in any way that I find helpful. He's a good guy. I have made an appointment at Mayo for early March, with a doctor that I have met in the past. Happily for me, Mayo is just a 90-minute drive away. Until March I will continue the regimen that I have been on.

My oncologist again expressed some surprise that I still have the energy and ability to run, considering my test results. He has 60 myeloma patients now, and clearly believes that my proteins are going out of control. Nevertheless he has always been supportive of the running, for which I am grateful. Interestingly, when I called Mayo, I told the person making my appointment that I was a marathoner, and later at the end of the call she too said "keep on running!" Last night I was feeling a little mopey and didn't really want to do the 12-mile run that was on my schedule, but I did it anyway and felt quite a bit better afterward. Running is good, life is great!

We also discussed the connection between celiac disease (gluten intolerance) and myeloma. He agreed that there is a connection, and remarked that there is also a connection between celiac disease and Waldenstrom's macroglobulinemia, in which the characteristic monoclonal protein is IgM rather than IgG or IgA. We told him that we were now eating a gluten-free diet, and asked him whether I should get the antigliadin antibody test. He looked skeptical until I mentioned that I have a son with celiac disease, and then he said "we can do it today!" The blood is drawn and I hope to get the results within a week.

I can think of two changes in my habits between the five weeks of apparent success ending in October and the less-successful nine weeks ending after Christmas:

• I cut the amount of naproxen sodium (Aleve) that I use to manage headache in half, to one 220-mg capsule per day, because the low-dose naltrexone seemed to help the headaches too. There is some suggestion in the literature, though, that NSAIDs like Aleve might actually have a modest beneficial effect against the myeloma because of their influence on COX-2. I'm well beyond the extent of my knowledge here, but will go back to two Aleve per day for the next two-month period just in case it makes a difference.
• We changed our diet to eliminate nightshade vegetables, including peppers and tomatoes, in hopes of further reducing inflammation. However, tomatoes have some very beneficial nutritional value as well - in fact they were designed to be eaten and to support animal species, as a way of propagating their seeds. This benefit may not actually accrue to humans, but nevertheless I will go back to eating some tomato, and peppers too, especially in cooked form, particularly as organic salsa or pasta sauce but probably not as catsup. Besides, I like tomato and it is the only thing I have really missed in my recent diet. Sunshine, my beloved dietician and cook, seems to be OK with this.

In addition, Sunshine came across a 2004 University of California (Berkeley) study indicating that 500mg of vitamin C daily reduced the level of serum c-reative protein (inflammation marker) in volunteers by 24%. I have not been taking vitamin C, except in food and the modest amount in my daily multivitamin, but will take 500mg from now on.

My apology for posting this so late. My grandson was in town until yesterday afternoon, and when there is a time conflict between him and blogging, you know who wins! :-)



Friday's (today's) breakfast: Organic oatmeal, blackberries, banana, Don's fruit/berry/nut mix, Hershey dark chocolate, organic fat free milk.


Thursday's salad: Organic salad greens, cucumbers, avocado with lime, Maytag blue cheese, macadamia nuts, blueberries, raspberry vinegar.


Thursday's dinner: Wild-caught Alaskan salmon, organic green peas, organic pitted dates, Hershey dark chocolate. I went back for seconds. Not shown: an excellent oatmeal stout.