Sunday, August 24, 2008

Mayo Clinic Visit Aug 22

We celebrate the end of cycle six of the phase-II trial of the new drug CC-4047 with dexamethasone (dex). The first three monthly cycles brought very good results, then the fourth and fifth cycles not so much, but this sixth cycle seems to point to a continuing gradual decline in tumor burden. My two primary markers are IgG and M-spike. In this sixth cycle:
  • IgG dropped 23%, from 1360 down to 1040 mg/dL, lower than it has ever been before in five years of watching it. IgG does bounce around, though, as the immunoglobulins respond to internal bacterial and viral infections, so it could pop back up again in a month. Or not.
  • M-spike went down 9%, from 1.1 to 1.0 g/dL. It is the best measure of monoclonal protein, which in turn is the best measure of total tumor burden other than a bone marrow biopsy. The ideal (and normal) value is zero.
The good news is:
  1. The cancer does seem to be declining, if rather slowly, and
  2. There really isn't any bad news.
  3. Life is great!
Dr. L took my blood pressure two different ways and got numbers close to 150/80 each time, higher readings than I have ever had before. Ever. Maybe that's the bad news. I'm not too worried yet, though, because I have recently had very normal blood pressure readings too. Shouldn't my blood pressure be a bit high when visiting my oncologist? Yes, but maybe not in this case because she had already told me that the tumor burden seems to be going down.

Regardless, Dr. L knows that dexamethasone can cause high blood pressure, and is aware of the risks that it brings. She is concerned enough that she has reduced my weekly dose of dex from 20 mg to 12 mg. This does NOT displease me! I hate dex - I just ran a half marathon race ten minutes slower than one I ran in May, and I attribute most of the loss of speed to dex. I wonder what else it's doing to my body. Of course I hope that the reduction in dex will not significantly reduce the efficacy of the treatment.

We will continue with 2 mg of CC-4047 daily and 12 mg DEX once weekly for the seventh cycle. Here are some 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 drugs, CC-4047 and dex, are discussed in a previous post.

Other subjects that came up:
  • Some people take their dexamethasone in the morning and some take it in the evening, so I asked if there is any difference in efficacy. Dr L said not, but there may be a difference in side effects, especially regarding sleep. Since I am not having much problem sleeping, I will continue to take it with dinner.
  • I asked if normal plasma cells can replicate themselves. Dr L said that they do not replicate directly, but through progenitors called "memory B cells." These are the same cells that some researchers suspect of going wacko (technical term) and creating defective plasma (myeloma) cells in great quantity. These progenitor cells are also resistant to the usual treatments, like CC-4047 and dex, which may be why myeloma always comes back. Researchers are actively working on ways to eliminate the wacko progenitor cells.
  • The treatment is reducing my markers rather slowly, so I asked if that predicted a poor outcome. She said that it may be just the opposite - that a fast treatment response can be followed by a fast return of the cancer, and that a slow response like mine is consistent with other indicators suggesting that my cancer moves slowly. She also said that a slow but consistent downward trend in markers is often seen in people taking Revlimid and CC-4047.
  • I was initially diagnosed with "light chain-disease" five years ago, so I asked Dr L if I really do have light-chain disease. She preferred the term "light-chain deposition disease," and said that I do not have it. Apparently I have a rather garden-variety myeloma with an incidental, minor secretion of lambda light chains. In other words the myeloma cells themselves are the problem, not the the light chains, and that's actually a good thing.
Here are a few specific test results:

Test   May 29   Jun 26   Jul 24   Aug 22    Remarks
IgG mg/dL 1260 1450 1330 1040 Variation is normal
M-spike g/dL 1.2 1.1 1.1 1.0 Best tumor measure
L FLC mg/dL 4.25 4.03 3.30 3.57 Down is best
Calcium mg/dL 9.7 10.1 9.7 9.3 Below 1.2 is best
Creat mg/dL 1.1 1.0 1.0 1.3 Kidney, lower is better
HGB g/dL 14.5 14.8 14.3 13.8 Hemoglobin, a bit low
RBC M/uL 4.23 4.28 4.17 3.99 Red cell count, low

I'm no longer concerned about lambda free light chains (L FLC). Calcium is dandy. Creatinine is up, but it has been this high in the past. Hemoglobin and red blood cell count are down, but they have been lower. Albumin (liver function, not shown) is normal.

I feel so very lucky, still able to finish a half marathon when I know so many myelomiacs who could not. Live one day at a time and make it a masterpiece!

Dinner 1   Dinner 1: Wild-caught sole pan-fried with ancho pepper, organic broccoli with parmesan cheese, organic nectarine, organic lime.
Dinner 2: Grass-fed free-range beef, organic plum, organic broccoli with parmesan cheese.   Dinner 2
Dinner 3   Dinner 3: Free-range grass-fed chicken breast, vidalia onion, organic nectarine, vegetable quiche with organic baby spinach, organic tomato, vidalia onion, parmesan cheese, organic egg.


  1. Congrats on the good report from the doc.

    I think your BP was high due to stress for SURE!

    I know that it is disheartening to run slower than just months prior --- one step at a time, my friend.

    You are doing GREAT!

  2. The "garden variety," huh? Well, that never-heard-before expression goes right into my myeloma dictionary! ;-) Hmmm, I hope mine turns out to be the "pink flamingo variety" (stay tuned to my blog, I will be posting soon about these very odd-looking creatures that we saw in Camargue, I kid you not!). ;-)
    Seriously, things sound great, Don, and I am soooo happy for you and yours. :-)
    (back in) Florence, Italy

  3. Great news Don! Congratulations!!!
    Reading your comment it occurred to me a question:
    does your doctor consider the change in Mspike (1.1 to 1.0) a decline? I'm asking because my doctor would not consider it a decline, but just an indicator of stability (he considered an indicator of stability also the change from 2.6 to 2.2). I'm threfore really intrigued by the way such a change is considered at Mayo.
    All the best,

  4. Hi Sherlock,

    Dr L had said in the previous visit that she was hoping my M-spike would get down to 1.0, so she seemed pleased when it did get there this time.

    However, on the test results sheet it actually says "size of monoclonal protein has not changed significantly since previous measurement." What we know is that the M-spike measurement is not highly repeatable, so a 10% change may mean nothing at all.

    When combined with a significant drop in IgG, though, it is a good sign.

    Personally I think that a decline from 2.6 to 2.2 is a significant change. It sure isn't going UP anyway!

  5. Hi Don-
    We didn't get a chance to talk after the support group meeting... I am using your blog as one of the models for mine. I will also have a shopping cart with cancer book reviews and books available for sale (including mine in a few months!) Also considering starting a forum. Such an ambitious project,! Would you be interested in participating? Pat

  6. Hi Don, I'm happy to see you're doing well. I'm running a half-marathon to raise funds for multiple myeloma research in Toronto. If you, or anyone you know would like to sponsor me, please visit/forward the link to blog. Thank you.


    Multiple Myeloma Fundraising Blog

  7. All seems very good indeed Don, everything going in the right direction. Keep up the great work. Thank you for your very good blog I learn so much from it. Our best wishes to you both. Keep Safe.

  8. My name is Kim and I am working with the American Cancer Society on a new project that will give newly diagnosed cancer patients access to ACS’s “Patient Navigators” online, through a chat window. It’s a free service and we’d like to expand the program if there is a good response. Considering your readership, I was hoping you would consider making a post to let readers know it exists? The landing page is at: if you want to check it out. My email address is if you would like to email me directly.
    Thanks so much,