Thursday, July 5, 2007

Myeloma's Relentless March

We stopped thalidomide two months ago, and I have had no treatment since. Blood tests were a week ago, and today I saw my doc, an oncologist/hematologist.

IgG, M-spike, and free light chains were all up from a month ago, though none by a surprising amount. I didn’t get a copy of a B2M result; I don’t yet know if it was done. Actual values from key tests are displayed graphically in the charts and numerically in the test result table. In short, it appears that the cancer is still advancing slowly and relentlessly. That’s what it does.

I started a curcumin regimen on June 27. I also asked my doc to think about low-dose naltrexone (LDN) as another complementary treatment, and he agreed to check into it. We both understand that if the myeloma makes a sudden jump, we will probably go back to “conventional” treatment such as Revlimid.

Despite their inexorable climb, my cancer numbers are still so low that it is barely considered “smoldering” myeloma. This is good. Nevertheless, I have recently felt an occasional ache in my left upper arm which I cannot pinpoint by palpation. When I suggested to the doctor that my numbers were too low for that to be a bone problem, he pointed out that a plasmacytoma can occur anywhere. He has ordered an x-ray of that bone.

In one month we will check liver and kidney function, and in two months we will do another full set of tests. Meantime, I figure on living life to the fullest. Live one day at a time and make it a masterpiece!

Related links, also listed on the right sidebar:

Ham dinner
Hormone- and nitrate-free ham, organic red grapes, Jarlsberg cheese, Roquefort mustard, Dove dark chocolate. Estimated Weight Watcher points = 8.


  1. What strikes me, Don, is that with your level of bone marrow plasma cells and serum IgG, here in Italy, you would be considered to have Mgus and NOT MM (I don't know anything about the light chains, though). I lived with that kind of values for about two decades. For this reason my suggestion is to go on with natural products only.
    Do not rush for any other treatment. One of my doctors once told me that the key to long survival is to put off treatment as much as you can because new and better drugs and treatments will be discovered in the meantime.
    The doctor told me: 'You could be dead, by now, if we had treated you when we discovered your Mgus (in 1988)'.
    Those words changed my perspective on myeloma. MM is NOT like other cancers (the earlier you treat them, the better for your health).
    Take care,

  2. Hi Ana,

    You're good! You know what you are writing about.

    When I was first diagnosed, by doctor marched in and said "you have light chain disease." I don't know if that took it out of the MGUS category or not. At that time the BMB showed 9.8%, but that has since dropped. We have had discussions about whether it is MGUS or "smoldering," but if you look at the IgG it is clear that the trend is up despite my very healthy lifestyle. So my doc is quite concerned.

    Your doctor may have been referring to melphalan and the other early chemotherapies, but I do agree. As you know, I recently posted about rethinking aggressive treatment.

    The more I learn about the alternatives, the more I am interested in trying them.

    Thanks, Don

  3. Great Don!
    Yes. IgG can go up. But they also go down. I even had them at 3700! The important thing, however, the really important one, is that you have safe bones, working kidneys, no anemia and no hypercalcemia. Furthermore, my current doctor explained me that I don't have to look at the IgG level, but at the M-spike. The latter, as you certainly know, shows the level of bad IgG, that is, those linked to the illness (the rest of them are good IgG). The good news is that M-spike is lower than IgG, so don't worry.

    Btw, I wanted to let you know that I found a very recent piece of research proving that vitamin D is preventive for a large variety of cancers, MM included! It's the first time that something like this has been proved and I was very excited when I read it.

    Did you test your 25(0H)D levels recently? How much are they, if I can ask? Mine are very low and I'm working on this. Duties for the summer!

    Happy run,

  4. Hi Ana,

    What seems so scary to me is how the IgG seems to climb straight up since last December. But of course you are right, the SPEP M-spike is the bad IgG. Its trend is definitely up as well, but since it bounces around it doesn't seem so scary.

    I am a believer in vitamin D, and saw a recent study showing that we may not get as much from the sun as we thought. It seems to vary a lot from one person to another. I do take 1000 IU every day, but have not had my blood levels checked.

    Good Sunday to you, Don

  5. My Family wish you all the very best Don - thank you for your very kind remarks on my blogsite, we continue to fight each and everyday. Hamada is now back on 'Chemo' after a short remission, now we fight to get the levels down to proceed with a transplant - really his only chance now to delay. He is a good kind man, who also loves his family, he is still smiling each and every day. Keep up your good work - we will watch your site with interest.Sincere Regards Susie

  6. Dear Don,
    think about checking your 25(OH)D. You might have surprises and need to increase the 1000 IU, who knows.
    You are getting cholecalciferol, aren't you? I read that the other Vit. D forma (ergocalciferol) is slower and weaker and that cholecalciferol is definitively better.
    According to Giovannucci (Harvard) and other doctors a good level of vit. D is around 100-125 nmol/L (I only have 54,5!).

    What did you read about the sun? Is there a specific article?

    take care,

  7. Dear Ana,

    I didn't know what kind of Vitamin D to get, but what I am using is made from fish liver oil, which I believe is cholecalciferol (D3).

    I think that I saw a short piece on TV about vitamin D from the sun, indicating that we may not get as much as we think. But it may have been based on this recent article that Sunshine just found.

    Do you have your own blog? You have a lot to share! :-)


  8. Many thanks. I'll try to get it. Check the cholecalciferol thing, because it's important. Also, if your vit.D is made from fish oil and especially from cod, pay attention to the vit.A you get. Recently has been discovered that too much vit. A may be not good for the bones.

    I don't have a blog. Blogs require time, something I'm very short of. But I like to read other people's blogs in my free time.

    take care,

  9. Don
    Please tell me more about your experiences. Your MSpike and IGGS are stable, yet you did not undergo a stem cell transplant? Also, more about LDN and curcumin. My mspike is down and I've completed the Rev/Vel/Dex rounds (4). Starting curcumin and looking at LDN.
    Thank you for the invaluable information!!

  10. Hi Ann,

    This post was written in 2007, and a lot of water has gone over the dam since then. Curcumin didn't help me. LDN did help a little, for a while. See But in early 2008 I started on a study drug called pomalidomide and the myeloma has been stable since.

    I do not intend to do a stem cell transplant except as a rescue when all else fails. That may be a long way off, I hope.

    Best to you.