Friday, March 6, 2009

Better Than Plateau

Mayo Clinic Visit Wednesday, March 4, 2009, end of Cycle 13:

Great News!

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%and the lowest IgG ever, 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:
  • 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 pure, organic, non-hydrogenated 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.
Other Good News:

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:
  • 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.
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.

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 key drugs, CC-4047 and dexamethasone, are discussed in a previous post.

Here are a few specific test results:

Test Dec 11    Jan 08    Feb 05    Mar 04    Remarks
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 doctors have started ordering the test for LDH at every visit now. My understanding of Dr KDS' explanation is that LDH is a non-specific marker for cell damage and is used as a screen for a variety of problems that might not otherwise be picked up. Mine was normal.
  • 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).
    • 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.
    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.
  • 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.

Click to enlarge, BACK to return here
Leftovers for dinner: Free-range no-hormone no-antibiotic bison, organic chicken, organic lettuce, organic squash with organic salsa, kiwi, avocado.


  1. How did you go about choosing coconut oil. Even my dad has been using it. Is one source better than another?

  2. We use Spectrum brand organic coconut oil, which we find at a co-op store in Stillwater. It's in a jar, not a bottle, and it's actually a solid at room temperature. We didn't exactly choose it - just found it and started using it.

    Important to know it's not coconut milk, and not "light" coconut oil.

  3. Just stumbled upon your blog enjoyed reading through some of it. I am intrigued by the gluten-free meals. As I am beginning to think I have symptoms of celiac.
    Just was diagnosed with under active thyroid last year and have noticed a skin rash connection with my 1 beer after a long strenuous bike ride last summer. Pizza is another instant rash for me too within two hours of eating it. So I have an appt with my dermatologist in a few weeks and after reading this I might add the beer back into my diet so as not to have false readings.
    Hope you get better with your illness.

  4. Hi Coty,

    Beer is in a gray zone. The protein in barley may give symptoms like those from gluten. But in my case I think I'm getting away with it.

  5. Oh Don, this news is so fabulous that tears (of joy) are in my eyes! I am sooooo happy for all of you! :-D

    I brought back a jar of coconut oil (solid stuff, as you mention) from the U.S. last October. I haven't used it yet, since I am thinking of mixing it with curcumin powder (one of my upcoming messy kitchen experiments)...hmmm...if that doesn't work, I will use it in my cooking. Thanks for the tip!

    Y'know, Sunshine and Sweet Pea really should write a cookbook. I, for one, would buy it!

    What you write about genistein is interesting. I plan to start taking it, too, even though I have heaps of other things to test, first.

    Well, keep up the good work, Don! Yaaaaaay!

    Florence, Italy

  6. Don, that is good news. I read your blog (and Margaret's blog) with interest. It helps me to find a way to deal with my illness. I know since three months I have MM.



  7. Holy Moley! Look at those numbers! Wow! Congratulations! I don't know what you did to make the difference but whatever it was, we'll take it! I'm also thrilled with your X-ray results! You're doing great!

    I wish you continued good health and happy running! : ) Donna

  8. Knew here, spouse of a sm patient.
    I've been reading margaret's blog since December (during 2 months with spouse in hospital) and found yours today. We may have crossed paths last week at Mayo, his first visit to Dr. L in hematology, also to Ortho, and pain clinic w/SM and a thoroughly irradiated plasmacytoma at L-5 & collateral damage (compression fracture = pain).
    Have you visited the Complimentary/Integreative Alternative medicine dept there?
    Who is guiding your dietary remedies?

  9. Hi Julie,

    Thanks for checking in. I'll send you an email too.

    I have NOT visited the CAM department at Mayo. Now that you mention it, I wonder why not? I just never thought of visiting there - but I will. There is always plenty of time between the blood draw and the doctor appointment.

    I go to a naturopath in St Paul who helps with that part of the treatment. Dr HH.


  10. Hi Don,
    After reviewing your supplement list, I have a question for ya. Is there a particular reason why you reduced your intake of Curcumin and discontinued the EGCG (among other things)? You may be like me and try different things in hopes of finding the best combination of supplements. I discontinued EGCG during Jan-Feb and tried Capsaicin instead. My Beta 2 Microglobulins increased but are still within the normal range. They may have increased anyway but I've added EGCG back in hopes that my next results will be better next time. We shall see! I still feel great and am thankful you are doing well too. Take care, Donna

  11. Hi Don-
    Thanks again to you and Barb for preparing content at last Wednesday's Myeloma support group meeting! Is that great chart grouping Myeloma drugs available on your site? I would like to post it on my site but don't know how to do that if content is not on Internet. I can't seem to save content off e-mail or my own files. Could you (you should!) post it on your site? That way I can steal it and pass it on!!! Pat

  12. Great idea, Pat,

    I put the list of myeloma chemotherapy drug names here. And there is also now a link to it on the sidebar. For those interested, the list includes the trade name, generic name, and study name of several often-used myeloma chemo drugs. It's incomplete, of course, but it will probably improve as time goes by.


  13. Donna,

    I changed my supplement regimen at various times based on evidence of what was or was not (mostly was not) working. The evidence is thin, of course, usually based on only one month's information, and I admit I was also influenced by the daunting task of simply swallowing all of those pills twice every day.

    Now I've had good results for two months in a row, and the number of capsules is more manageable, so I'm not going to change anything for a while.


  14. Hello,

    You may or may not have seen the forum I recently started that is 100% dedicated to Multiple Myeloma. Please take a moment to sign up, tell us your story, and support others like yourself. If you like the site please add a link to us as well...



  15. Sure enough - another way for us myelomiacs to communicate. Looks good to me - here's the URL: