Monday, January 12, 2009

CC-4047 Cycle Eleven

Mayo Clinic Visit, January 8, 2009:

After eleven cycles of the trial drug CC-4047 and dexamethasone (DEX) my tumor burden may be starting to go up again. Last month's M-Spike was 1.0 g/dL and this month's is 1.1. The test-result printout, however, says "no significant change." And I suppose that's right. It's possible to read too much into one set of blood tests, and the accuracy of this test may not be much better than 10% anyway.

But previous tests and the results of other markers do suggest that the myeloma is coming back, if slowly. I hope not, but it seems most likely. In particular, IgG increased from 1260 to 1350, the third modest increase in the last three cycles. In contrast, though, Lambda Light Chains went down from 4.03 to 3.31 mg/dL, which might mean something, might not. They were up 24% last month, and this month they dropped back to about where they were.

Other numbers like calcium, creatinine, and albumin are fine, as is WBC the white blood cell count. AST and ALT, both a bit high last month, are back down into the reference range. Even RBC, the red blood cell count, has inched up into the reference range. So neither the myeloma nor the treatments are injuring any soft-tissue organs yet. I like that.

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

Here are a few specific test results:

Test Oct 16    Nov 13    Dec 11    Jan 08    Remarks
M-spike g/dL 0.9 1.0 1.0 1.1 Best tumor measure
IgG mg/dL 1130 1170 1260 1350 Variation is normal
L FLC mg/dL 3.14 3.25 4.03 3.31 Free light chains
Calcium mg/dL 9.6 9.8 10.1 9.9 Below 10.2 is best
Creat mg/dL 1.1 0.9 1.0 1.1 Kidney, lower is better
HGB g/dL 13.8 14.6 14.6 15.3 Hemoglobin, normal
RBC M/uL 3.97 4.19 4.20 4.36 Red cell count, normal
WBC K/uL 4.4 4.3 5.3 4.6 White cells, normal

Supplements: For quite a long time now I've been taking a rather large number of different herbal supplements, many of them specifically intended to help treat the myeloma. Over the past three months, though, I've done an experiment. For one month I just skipped the supplements, and then for the next two I took them fairly religiously. I can't be perfect - it just isn't in me - but I did as well as I could. Results: (1) The tumor burden may have gone up marginally when I took NO supplements, and (2) It may also have gone up marginally in the two months that I DID take the supplements. In other words, I have no evidence that the supplements made any difference at all. None.

I can't prove that they DIDN'T help just a little bit, either, but that's not enough. Taking a fistfull of capsules twice a day is not a treat for me. In fact it's a huge pain in the butt. I hate taking them, and they cost a lot of money. So the supplements require a serious re-thinking. I will make an appointment with our naturopath and go through them, one by one, and come up with a shorter list. Much shorter, I hope. Maybe I can get it down to a fistfull ONCE a day. There are a few supplements that are quite safe on the list, such as saw palmetto for BPH (it's a guy thing), or Vitamins D3 and K2 for strengthening bones. Those are keepers. But curcumin, EGCG, quercetin, AHCC, and resveratrol are all up for grabs. On the other hand, Margaret has been posting good information about genistein lately, and our naturopath did recommend that a few months back, so perhaps it's worth a try.

Doctor: This time I met with the nurse-practitioner Dr KDS. Here is some of the discussion:
  • I'm supposed to take a stomach-acid reducer with the weekly dexamethasone (DEX) to help ward off DEX-induced ulcer. I've experienced a slight stomach discomfort on ranitidine, so for one week I tried Prilosec, the other recommended option. Later I felt a sharp pain in the gut for a half day or so, possibly at a bend in the colon. I told Dr KDS that I had taken Prilosec but not for the recommended four days in advance, and she said that four days was not necessary. No explanation for the sharp pain, but back to ranitidine.
  • I asked if there was any information or simple test that could tell us whether the lesions in my bones are getting larger or smaller. X-Ray bone surveys are very inaccurate, and the PET scan is not done often because of its cost. Sigh. We myelomiacs often don't know what the myeloma is doing to us until we break a bone. Seems like there should be a better way.
  • I asked if the DEX and CC-4047 were making my body age rapidly, especially my skin. She thought probably so.
  • I noted that skin is continuously renewing itself, sloughing off the top and rebuilding from underneath. If that rebuilding requires angiogenesis, the creation of miniscule blood vessels, then that rebuilding may be inhibited by CC-4047 and DEX, both of which are anti-angiogenic. She agreed that might be possible, even likely.
  • I asked if there were any other organs which deteriorated under the CC-4047/DEX treatment. She suggested possibly the interior of the intestines, which are also lined with tissue that constantly sloughs off and renews itself from underneath. She thought NOT the more-critical organs like the heart, liver, and kidneys, which renew themselves in a different way.
  • I asked about the herpes zoster (shingles) vaccine for myelomiacs like myself who have already had chicken pox. Dr KDS said it was risky for immune-compromised people because it is a live virus, and in addition the efficacy is not very high. In other words it's not worth the risk. Insurance doesn't cover it either.
  • DEX is known to inhibit "glucose transport," the transfer of sugar from the blood into the muscles which need the sugar for fuel. I told her about a recent unintentional "experiment."   I ran seven miles on DEX day, when the DEX was at maximum effect, and finished totally exhausted even though my pace for that run was slow. The very next day I ran a similar distance at a faster pace, finishing with energy to spare. Neither of us was very surprised.
  • I measured my blood glucose on DEX day again, this time with the 8 mg dosage. The chart below shows glucose measurements at 40, 20, 12, and 8 mg of DEX, always taken the evening before.
I'll go down to Mayo again in another month or so. Meantime I'm still running 20-30 miles per week, hoping to increase that gradually back up to 40. Life is good.

Click to enlarge, BACK to return here


  1. Hi Don,
    Reading your report (interesting, as always), I began thinking how peculiar it is that each of us has such a different approach to this cancer. For instance, you seem to get concerned when your M-spike goes from 1 to 1.1, whereas I barely blink if my M-spike goes up to 2.5 or even higher. Of course, I would get worried if there were other signs of activity...

    When you mentioned stomach acid, I remembered reading something about curcumin and its preventive activity re ulcers and whatnot. So I had a quick look and found this study: And there are others, too. No surprise, since turmeric has been used for centuries in traditional medicine to treat stomach and gastric ailments.

    So, who knows?, it might reduce your stomach acid without the icky side effects of more conventional medicines…is there any way a lab can measure the acid-reducing activity of a substance like curcumin? Might be worth checking out.

    Take good care, and thanks for the update!
    Florence, Italy

  2. Have you heard of the new liquid curcumin, Curcumall from Israel...May be helpful?? Jean

  3. Hi Don,

    I really enjoy your blog and learn a lot as you are clear, relevant, positive and informative--making "scientific" information more accessible for a non-science type like me. So, thank you!

    I have had good results with Velcade and curcumin the last 7 months. My M Spike has gone down nicely and hovers around 1.1. You were saying that an injury worried you in regard to possible new lesions (congratulations on a normal X-ray!). I've just started feeling a pretty strong, localized pain in my hip, so I'm going in for an X-ray to find out
    --but feel pretty sure it's going to be lesion related.

    I seem to recall that my doc had answered my question, "When M protein goes way down is one less likely to have bone lesions?" in the affirmative, so I feel a bit unhappily surprised by this development.

    The question: Have you understood that they are highly correlated? (Lowered M spike, lesions less likely?) It only seems to make sense, although I realize we can't count on these things.


  4. Hi Didi,

    I did ask Dr L that question, and she responded that there is a strong correlation.

    However, as you say, we can't count on it. Nevertheless I also had a recent x-ray survey which seems to show less bone damage than one a year ago.

    I'm going to try to get a little more from Dr L in a week or two.