Friday, January 4, 2008


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! :-)

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

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

Yesterday's dinner
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.


  1. I can understand your disappointment (been there!), but as someone who has a higher m-spike than yours and who has gone through rather similar fluctuations, I am glad to see that you are taking it with a cheerful attitude. Keep it up!
    I used to freak out when my numbers went up, but now I just shrug and think "next time will be better!" And it usually is, come to think of it.
    Our numbers are influenced by so many factors so your higher numbers could even have been caused by the stress of not eating your beloved tomatoes...;-) I know that sounds nuts, but who knows?
    Anyway, the fact that you don't have any CRAB symptoms (neither do I) is a very good sign.
    Also, another good sign is that your LDH is down compared to your last tests. I know it's not a specific MM marker but it's an important component of the whole picture. Before starting on curcumin, my LDH was 179, it is now 21 points lower. It's so important to consider the good news, as you have here.
    Keep up the good work, Don, and you will see: your next tests will be better.
    :-) Margaret
    Florence, Italy

  2. Dear Don,
    great, great decision the one to look for a second opinion at Mayo. I would have done the same thing. I can understand disappointment. It’s something we Mmers know well. However, my idea of your situation is that it’s a stable one and, hopefully, at Mayo, they will tell you this: your MM is stable.
    Let me interpret your results as my oncologist would do. First, the most important marker, the SPEP Monoclonal Peak. When mine ‘jumped’ from 2.3 to 2.6 I was very worried, but my oncologist explained that the 0.3 difference is very small and can stay in the ‘stability’ category. In your case, in the last six months, the monoclonal peak has remained virtually unchanged, from 1,96 to 2.05. And this is the most important test result to consider according to my oncologist (who, by the way, is one of the best in Italy. His research has been greatly valued at 2007 ASH).
    Second, you don’t have any Crab problem. Your blood calcium is perfectly normal, creatinine is perfect; no anemia in sight with such a high level of hemoglobina and no lytic lesions.
    Third, you feel well. Correct me if I’m wrong, but had you not discovered about MM, would you define yourself as ‘ill’?
    These three points, taken together, make a nice panorama. Test results, as Margaret says, go up and down, the important thing is that they remain in the same ‘frame’. I completely support your decision to go to Mayo and wish you and Sunshine a year of serenity and health.
    Take care,

  3. Don,

    Can I come & live with you? Your menu always looks so delicious!

    I spoke to Dr. Berenson about my own case. I had a SCT during the summer and my IgA has been creeping up since then. He suggested I NOT have any treatment until I actually have some symptoms. Most doctors want to treat the minute they see changes in the numbers.

    I'm going to "just say no" until I need something. I think what you're doing in terms of diet and exercise has to be helping in ways that the clinicians don't even measure.

    I have a feeling that burning through all the treatments just gives us a stronger, more resistant myeloma. You're on the right track, I think. You don't seem to have an aggressive MM and you're living a healthy life. You have a great family, too!

  4. "Humph!" and a beer sounds like exactly the right reaction to your news, Don.
    I'm learning a lot from your blog- one disease, so many ways to fight it!

  5. Don -
    I stumbled on your blog last the internet. I was diagnosed with MM, 7 months ago at age 46. My IGG level was 3000 and bone marrow biopsy show 30% plasma cells. All other numbers were and continue to be within normal range. My onc at City of Hope in LA and I have opted to wait and see and not do any treatments until my IGG is 5000 and bone marrow shows 50% plasma cells. I have blood draws every 2 months and have been fairly stable in the low 3000's. Like you, I use each new 2 month window to explore and add/delete something to my regime -sugar and caffeine were the first to go, then I went to all raw diet (for a while), I eat organic as much as possible and have added a boatload of vitamins and supplements. Kudos to you on all the running...I tried that but fear walking (fast)is more my speed. For cardio I have finally gotten into spinning at the gym which is great for my mind, heart and spirit.

    I think getting additional opinions is important and am amazed at how differently we can each walk this walk.

    Take care, Tami

  6. Hello! Cindy here. I came across your blog from Margaret's..and was referred to her from a fellow MMr from ACOR. Whew..all that said...I have enjoyed both your & Margaret's blogs. I'm so exhausted now as my head is much terminology I do not understand. I'm single so it's just my old feeble head I must rely on. I'm 52 young. I used to jog/run and I loved it. Due to effects of Thalidomide, Revlimid and Dex..I can't even skip now, but of course my MM is aggressive. I'm hanging in here and just getting on the Curcumin. I'm between treatments. I had to stop the Rev/Dex as the side effects were too much. It seemed my numbers started creeping up anyway. I took it for 14 cycles. I'm trying to take charge more rather than just take what the doctors prescribe, etc. I don't need to go on here, just wanted to first THANK YOU for your knowledge and help in posting all your info and experience. SECOND I want to encourage you and wish you more success. I know you are recently a bit discouraged but you've got great responses and suggestions. I do have a blog at I'll probably keep it, though I do like "blogspot". I had to create an ID for here and today created a blog here..but not sure what I"m going to do. ONE THING, though is I want to organize my blog more. I like your charts. Wondering if you put them in excel and inserted..I may try that. They look nice. With excel guess I can also make charts. Neat.