Saturday, February 7, 2009

Plateau Continued

Mayo Clinic Visit Thursday, February 5, 2009, Cycle 12:

Good News!

M-Spike went down from 1.1 to 1.0 g/dL and IgG from 1350 to 1160 mg/dL. Together, these results seem to indicate an actual drop in tumor burden of perhaps 10% or so. Maybe not, because test results can vary, but most likely the cancer is down. We celebrated last night.

I do wonder WHY it's down, though. I'm still taking CC-4047 2 mg daily and dexamethasone (DEX) 8 mg once weekly. What else was different in this last month? Or was it the previous month that was different, when it seemed to go up? I dunno. Anyway we'll take it! Thanks to Celgene for CC-4047, Mayo Clinic for excellence in medicine, and specifically to Doctors L and KDS.

Other test results were mostly good too, and in fact mostly unchanged. Light chains are down a little, but the ratio is basically unchanged. White counts and hemoglobin are within the reference range for "normal" people. Red cell count is at the bottom edge of the range, where it always is. I do have three little things to whine about, but I'll put those last because they don't seem very important.

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 Nov 13    Dec 11    Jan 08    Feb 05    Remarks
M-spike g/dL 1.0 1.0 1.1 1.0 Best tumor measure
IgG mg/dL 1170 1260 1350 1160 Variation is normal
L FLC mg/dL 3.25 4.03 3.31 2.78 Free light chains
Calcium mg/dL 9.8 10.1 9.9 9.7 Below 10.2 is best
Creat mg/dL 0.9 1.0 1.1 1.0 Kidney, lower is better
HGB g/dL 14.6 14.6 15.3 14.9 Hemoglobin, normal
RBC M/uL 4.19 4.20 4.36 4.28 Red cell count, low
WBC K/uL 4.3 5.3 4.6 5.0 White cells, normal


I met again with the nurse-practitioner Dr KDS. Here is some of the discussion:
  • In connection with my "plateau," Dr KDS mentioned the concept of managing myeloma as a chronic disease rather than a fatal one. But we both know that it's too soon to say that - people are still dying every day.
  • I asked Dr KDS about the effect of DEX on the thyroid. She wasn't aware of any effect.
  • In a recent visit, my naturopath raised the subject of chronotherapy, also called chrono-modulated therapy, in which the chemo is administered at the time of day that takes advantage of a person's biorhythms to maximize the benefit and minimize the side effects of the drug. Dr KDS thought that it doesn't much matter for the CC-4047. She said that the effect of the DEX peaks 8 to 14 hours after it is taken, so a person should determine for him/herself when s/he wants that to happen. Most people like to take it in the evening, so that the effect is maximized during the following day.
  • Since both CC-4047 and DEX have a half-life in the body of eight hours or less, I think (based upon my extensive medical knowledge - Ha ha) that there IS likely a time of day when each of those would be most effective. I wonder when that is.
  • We have no Phase II data on length of the plateau for CC-4047, so I asked about Revlimid, a similar drug, in comparison with thalidomide. She made a call and reported that the median "time to progression" for Revlimid is about 30 months, much more than thalidomide. Some people are at 50 cycles and still going on Revlimid. We can hope that CC-4047 gives a plateau of that quality.
  • I asked about the targeted measles therapy project, and she said that it is currently in a second Phase I trial with real patients.
  • Dr L had said that people get more sensitive to DEX as time goes by. I asked if that applied to the benefits of DEX, or only the side effects. Dr KDS wasn't sure.
  • The next visit will be almost exactly one year from my first tests at Mayo. I asked if there is any set of tests that are done on an annual basis, such as skeletal survey, bone density measurement, or PET scan. She said not unless there is a symptom that suggests a need for the test.
  • See, the problem is that people cruise along thinking they are on a plateau and suddenly a bone breaks. Yikes. That has happened to many of the people in my local support group. If it happened to me, almost any broken bone would stop my running, so my lifestyle would change instantly and dramatically. For anyone, including me, shouldn't we find a way to spot a weak bone and treat more aggressively before a break occurs?
  • As part of the study protocol, Mayo does an electrocardiogram every three cycles, and did one Thursday. The doctor always reports "bradycardia," a slow heart rate, which we know about. Runners have strong heart muscles and low heart rates. This time, though, we also got this report: "Ventricular escape beat and SVPC are now present." I don't know what that means, and it doesn't sound good, but Dr KDS wasn't worried about it. I suspect that it was due to being overcaffeinated for the ECG. Dr KDS didn't disagree. Coffee AFTER the ECG next time.
  • My TSH (thyroid marker) was 5.4, just above the reference range of 0.3 to 5.0, suggesting that I may be hypothyroid. Hmmm. They do this test every three months too, and it has bounced around a bit in the past year. I will self-treat for this in the next three months, using supplements recommended by my naturopath, and we will see if it drops. I'd prefer it to be down around 2.0.
  • After my run Thursday my right foot felt like it was waking from being "asleep," a bit prickly and cool. This lasted for several hours, and could be the beginning of peripheral neuropathy, which can be caused by drugs like CC-4047. I have felt this before when I was taking thalidomide, a similar drug. In all cases it was triggered by running and it disappeared in a few hours. We'll see - if it's peripheral neuropathy it will be back.
M-Spike Versus IgG (or IgA):

M-Spike (Spike) and IgG both measure immunoglobulin G, which is one of the proteins that our bodies make to fight off infection. Spike measures the useless, monoclonal immunoglobulin made by the malignant plasma cells, whereas IgG measures BOTH the useless monoclonal immunoglobulin and the GOOD useful immunoglobulins that fight infection, made by the normal plasma cells. In United States labs, Spike is usually expressed in grams per deciliter (g/dL), whereas IgG is expressed in milligrams per deciliter (mg/dL). We can put them in the same units, mg/dL, by multiplying Spike by 1000. Example from Thursday's results: Spike is 1.0 g/dL, which is the same as 1000 mg/dL. Subtracting that from the IgG of 1160 mg/dL, we see that the GOOD immunoglobulins (IgG - Spike) are 160 mg/dL. Note that IgG must always be greater than Spike, or something is wrong. It can be quite a lot greater if the body has recently fought an infection. The measurement of IgG is more accurate than Spike, but is harder to apply as a cancer marker because the amount of good IgG is unknown. The analysis is exactly the same for IgA myeloma.

For my own amusement I plotted IgG and Spike on the same scale (Spike converted to mg/dL) going back five and a half years. You can see that Spike is always lower than IgG, though the difference has shrunk a lot in the last year since the beginning of the CC-4047 trial. I'll have to ask Dr L why that is:

Click to enlarge, BACK to return here


  1. Whoa! Thanks for the insight on IGG & M-Spike. That's the best description I've heard and it clears a lot of the fogginess in my understanding.

  2. Congratulations, Don! Excellent results...I am very very happy for you!

    I found your mention of breaking bones while on plateaus a bit unsettling. But, upon reflection, it's good to be aware that these things could happen.


    Florence, Italy

  3. I feel I have learnt a lot from this posting thank you Don, your results are very positive - keep up the fabulous work.

  4. Just checking in to let you know how happy I am that you are doing so well! Keep up the good work!

    One question, are you sure your Lambda free light chains are measured in mg/L rather than g/dL? If that's the case, I'm surprised I'm still walking around! Mine are measured in mg/L and are 891.34, waaay higher than yours! I probably shouldn't compare. (They have been as high as 1024.28!) Can you shed some light on this for me? I must admit I'm not as up on these things as I should be. Thanks, Gail

  5. The printout from Mayo labs definitely shows Lambda Free Light Chains 2.78 mg/dL (not mg/L). Two possible explanations for the difference:

    1. You are looking at lambda light chains from immunofixation measurements, not from freelite measurements. Mayo doesn't do that measurement for me, but when I went to an oncologist who did it, I got numbers that were generally somewhat higher than my IgG number, as high as 3720 mg/dL. I honestly don't know what it meant, except that the light chains measured by immunofixation are not "free" but are bound to other proteins. I think.

    2. You have a "light chain" form of myeloma, different from mine. My original oncologist thought I had it and said I had "light chain disease," but when I asked Dr. L at Mayo about that she didn't recognize the term.

  6. Thanks for your reply and explanation. This stuff can be so confusing! So many different terms and measurements! I'm happy to hear that you do not have "light chain disease". I don't much like what I read about it either. We don't get to choose though, do we? Thanks again and continued health and happiness to you, Gail

  7. Don, thanks for this information. I am interested in your supplement regimen (maby it can help me too, i have MM). Do you know arabinoxylan?

  8. My supplement regimen changes from time to time, as I try to find something that appears to make a real difference. It's always available from a link on the right panel, or HERE.

    I don't know arabinoxylan, but a quick "google" suggests that it might help build CBC counts. It isn't a prescription drug but maybe should be.

  9. Hey Don,
    Do you have any insights on what numbers I should really be focusing on as I march forward in a smoldering state? Obviously the M-Protein is important, but it's hard to find any information are stats on what is considered, "Oh crap, we better start zapping the suckers." I meet with my doctor on Tuesday so I am going to be asking him, but I was just curious what numbers you are most attentive to and what is considered really high or really low. The normal ranges are helpful, but it's hard to determine how abnormal my numbers are :)

    Thanks! -Phil (

  10. Hi Phil,
    Unfortunately, we myelomiacs vary a lot. I know people with 50% plasma cells in their hip bones who have no symptoms.

    The standard criteria is C.R.A.B. Calcium, Renal, Anemia, Bones. If calcium goes above the reference range, or kidney function (creatinine), or you are anemic, or there is bone injury, then you are on fire and not smoldering.

    Otherwise, if CRAB is OK or seems so, we tend to watch M-Spike and IgG (or IgA) I suppose. My previous oncologist started to worry about me when M-Spike got 2.0. He thought it was time to start Revlimid to forestall bone damage, even if I didn't have CRAB symptoms. Turns out Mayo did a PET scan which showed I did have bone injury, so the point was moot.

    But 2.0 is a mighty arbitrary figure. Higher for some folks, lower for others.

  11. Don,
    The supplements that I currently use are: Arabinox, Coenzyme Q-10, Curcumin, Omega 3, Quercetin, Thymus concentrate, Chorella or Green magma, selenium, green tea, magnesium and multie vitamimes. There are still a few that I would investigate.


  12. Both my M-Spike and IgG have been on the rise since my diagnosis in August '08. It's so hard to know when you break the trend to lower this risk of bone or kidney injury. I guess a detailed scan beyond the standard x-ray would bring some clarity around potential compromises in the bone density. My M-Spike is now 2.9 and my IgG is ~3000. Also, the last four measurements have shown an increase in my Kappa light chain and a decrease in my lambda; which makes for a ratio that has consistently increased. Lastly, my IgA and IgM have consistently decreased, which is probably due to the rise of my IgG.

  13. Yup it's hard to know, Phil. A year ago I was in your situation, IgG about 3000 and M-Spike 2.7. I did NOT want to start Revlimid and dexamethasone. What settled the issue was the PET scan - I had to start. If PET is available, it WILL TELL you if there are bone lesions.

    Otherwise perhaps I'd follow the advice of the oncologist, who has no doubt seen a lot of patients and can make the best guess.

  14. Does this mean you were smoldering for 4-5 years? I am not sure whether managing the disease with Dex and Rev will be the course of action given that I am 28; but I really don't know what to expect until I meet with Dr. J on Tuesday. Thanks for all your insights! I find them very helpful. Kickin' it! -Phil

  15. Yes, I smoldered from July 2003 until March 2008, when the PET scan showed involvement in three bones, not yet broken through. During that time M-Spike went from 0.52 up to 2.7, and bone-marrow biopsies went from less than 1% plasma cells up to more than 10%.

    You are right - the treatment of choice for a newly-diagnosed patient in Stage I may have changed in the past year. Recent trials of three- and four-drug combos have shown a lot of promise, and your doctor may want to try one of those. Velcade is also approved for "front-line" therapy now, but wasn't then.

    Do you have a support group near where you live? If you don't know, you can find out by calling the IMF hotline. You might benefit by talking to people who have had Rev/Dex or other therapies that your doctor could want to start you on.

    That's what a "support group" really is - an information group. We discuss doctors, therapies, and results including side effects.


  16. BTW Phil,

    My calcium levels were good too, 10.2 mg/dL, on the very day that the PET scan showed lesions in both scapulae and one vertebra. That's slightly high, but it had been higher before, and I do take calcium supplements which can bump the number up a couple of tenths.

  17. Hello Hans,

    Sorry for the late response and thank you for sharing your supplement regimen.

    My Sweetie just mentioned that perhaps I should mention this article which warns against green tea when taking Velcade. It probably doesn't apply, and you probably know anyway, but there it is.

    Thanks again, Don