Thursday, September 13, 2007

Marching, Marching ...

Myeloma doesn't give up easily.

I started a curcumin regimen on June 27. Today I got the results. They were not terrible, but sadly, they do not show much benefit from nine weeks of curcumin treatment. Here are some numbers:
  • Free lambda light chains are down 12%, and
  • “Spike” (SPEP) is down 3% to 1.90 g/dL, but
  • IgG is UP 12% to 3110 mg/dL, and
  • Serum calcium has edged up to 10.4 mg/dL, which is above the normal range for the first time ever.
Actual values from key tests are displayed graphically in the charts and numerically in the test result table. At bottom, it appears that the cancer is still advancing slowly and relentlessly. That’s what it does, and in my case the curcumin seems to have little effect.

Doc and I had quite a discussion today. He really wants to put me on Revlimid right away. I have lots of questions about that, such as:
  • Should we hit it easy, shoot for a partial remission and stability, or
  • Should we hit it hard, with more drugs, and shoot for a longer-term remission?
  • Why Revlimid and not Velcade, when we know that Thalomid (thalidomide), another “IMID” drug, has already failed?
  • Why not wait until there are symptoms, as Mayo would do?
  • Is the above-normal calcium already a symptom?
We didn’t decide these issues; I put off the decision for another month at least. Meantime he reluctantly consented to prescribe low-dose naltrexone (LDN) for that period, five weeks actually. I will take that prescription drug, along with the curcumin and perhaps another supplement, for those five weeks and then we will see. In addition, he ordered another x-ray skeletal survey, which I will schedule ASAP.

The doctor believes that time is getting short, looking at the high IgG of 3110. But if that is a problem, it should also show up in other tests, which so far look pretty normal. Or it will show up as lesions in the bones, which we will soon determine. I’m trying to get the right balance here, of risk from the myeloma versus risk from the drugs that treat myeloma.

Meantime, I figure on living life to the fullest. Live one day at a time and make it a masterpiece!

Related links: Chart of IgG


  1. I have a few questions for you, Don, but it's early in the AM here and I am on my way to work. But the BIG one is: how much of that IgG number is monoclonal component? Since your M-spike went down, it actually seems to me (I could be wrong!) that what happened to me in June may have happened to you: that is, my total IgG went up, which freaked me out at first, but then a friend pointed out that what had actually increased were the GOOD IgGs, not the bad ones. Phew! And in fact my monoclonal component had gone down. The serum calcium is something to look at, did you ask about vit D? Just a thought before dashing off to work. Take care, and heck don't be discouraged! I have something new in my basket (I will send you a message about it later today, before posting the info on my blog at some point), Margaret in Italy

  2. Dear Don,
    what Margareth wrote is correct. The only important marker you should look at is M spike, because it shows the bad part of the IgG, those that are monoclonal and therefore related to MM. The rest of them are policlonal (not sure of the english word) and therefore good. Now, your M spike has actually decreased! So, no bad news. Actually this could be the beginning of a decreasing trend.

    Calcium has grown up. Ok. But not so much. This is not hypercalcemia. Again I would wait for a trend before doing anything. I would also see an endocrinology doctor. They ask you to do blood tests that show how your bones are doing. Also the tyroid influences badly bones and if you don't do these tests it is impossible to know it. My hematologist looks at the X rays and MRI, but is the enocrinology doctor that analyses my bone density and calcium related issues.

    For bones. X ray would show lytic lesions when they are already there. In order to see if lesions are forming my doctor also asks for an MRI of cranium, the spine and the lombo-sacral zone (My medical English is awful, but I hope you understand). I usually have X ray and MRI. Why don't you ask for MRI too? If it's clean (as I'm sure it is) it means that you have more time ahead to think and live free of MM.

    Two questions now. Why have you stopped doing the B2M test, which is considered a good indicator of MM?
    Same question for the bone marrow plasma cells. That would be another indicator. My doctor also does not ask for the bone marrow test (but in my last one I had 70% of plasma cell) and preferres a scan called PET, which shows if and where is MM active in your body.

    Don, if I where you I would consider a second opinion before going into drugs. Once a big oncologist told me that you have to hit MM with an atomic bomb (chemo, SCT and so on)but only when MM has grown up and is making CRAB to your body. Not before. Before is useless.
    Consider my experience. My IgG is more than 34, my M Spike is more than 2.5, my bone marrow plasma cells are around 70%. But I'm fine. my last PET and MRI and X rays where clean. Therefore my doctor suggested to keep on waiting and see. He said my situation is stable and good. I trust him, also because he is one who goes to international conferences and publishes a lot in international journals.
    Please don't rush. Wait. Look for second/third opinions and keep on taking curcumin, maybe the hot version of it.

    Take care. Ana from Italy.

  3. Excellent advice, Ana! I was told the same thing by three famous MM specialists, one Italian (Dr. Boccadoro in Turin, very famous in the myeloma community here, and internationally) and two U.S. specialists, also very famous. That is, "no treatment unless you have CRAB symptoms." There is no advantage, they all told me, to treating early as opposed to later, and in fact the opposite could be true. Dr. Boccadoro was my choice for a second opinion in the fall of 2005 when my hematologist here was pushing me to begin chemotherapy (he sounds a bit like yours, actually...but I would like to point out that he later admitted that I was RIGHT). Dr. Boccadoro also recommended I have an MRI of my spine for future comparison purposes (I did). So, the news actually sounds good, especially now that I have re-read your results. Take care, Margaret in Italy