Friday, October 23, 2009


Mayo Clinic Visit Thursday, October 15, 2009, end of Cycle 21

Blood test results: M-Spike remained the same at 0.9 g/dL, IgG dropped slightly from 1070 to 1020 mg/dL, and Lambda light chains increased slightly from 2.54 to 2.68 mg/dL. These results don't really show a trend one way or another. "Stable" is the word.

Except: calcium is up from 9.9 to 10.3 mg/dL, above the reference range, and we don't know why. High calcium in the blood can indicate that bone damage is occurring. It went that high once before, though, and dropped right back down a month later. Hopefully next month's value will be back within range. I will skip my calcium supplements for a day or two before next month's tests, in case that makes a difference.

Of course I'm still concerned about the longer term, when the Phase II trial of pomalidomide with dexamethasone (DEX) eventually fails for me and a different, less-agreeable treatment will be required. Two months ago we reduced my DEX dosage from 8 to 4 mg once weekly - perhaps that was a mistake. Unfortunately, though, under the terms of the study, DEX can only be decreased and never increased, so if I want to continue taking pomalidomide I will continue taking 4 mg or less of DEX. Pomalidomide is good stuff - I DO want to continue on it for as long as possible.


The study doesn't say much about supplements. Margaret has recently blogged about ashwagandha, also called "withania somnifera," a shrub from India and nearby countries. The root is widely used as a medication in that region, and in alternative medicine in other parts of the world. Margaret took ashwagandha herself, and saw her IgG drop 25% and M-Spike drop 10% over a period of several months. She has written several posts about ashwagandha, all worth reading. Because of her apparent success, I have begun taking ashwagandha in a modest dosage. I ordered the patented Sensoril brand, packaged in capsules by Jarrow. I take one 225-mg capsule daily, the amount suggested on the bottle, at bedtime because it also induces a restful sleep.

In addition, I have added 100 mg of ordinary vitamin B6 to my regimen as an additional treatment for the mild neuropathy that is induced by the pomalidomide, and doubled the supplements for thyroid. The entire daily supplement regimen is available from a link in the right-hand panel.

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 wiiide browser window. Very "technical."

Some recent test results:

Test Jul 23   Aug 20   Sep 17   Oct 15   Remarks
M-spike g/dL 0.8 0.8 0.9 0.9 Best tumor measure
IgG mg/dL 1010 979 1070 1020 Variation is normal
L FLC mg/dL 1.95 2.07 2.54 2.68 L Free light chains
Calcium mg/dL 9.6 9.7 10.0 10.3 Below 10.2 is best
Creat mg/dL 1.0 1.1 1.0 1.0 Kidney, lower is better
HGB g/dL 14.0 14.8 14.5 15.0 Hemoglobin, normal
RBC M/uL 3.93 4.13 4.01 4.21 Red cell count, low
WBC K/uL 5.6 3.9 3.7 4.2 White cells, normal

Discussion with Dr. KDS:

  • Peripheral neuropathy from the pomalidomide has not changed much in this cycle. Still some numbness in the bottoms of my feet and in my thumbs. There is also a little tingling but no pain. The "tickle" sensation in my feet, sensitivity to light touch, might actually have improved somewhat, but the sensitivity to pressure has definitely not improved.
  • Many myelomiacs get shingles, because of compromised immune systems. I'd rather not, thank you. So I asked Dr. KDS about the shingles vaccine:
    • It is a live-virus vaccine, and not recommended for people who are immunocompromised; but
    • I don't get sick much - no empirical evidence that my immune system actually IS compromised, but
    • She pointed out that IgA, IgG, and IgM are important parts of the immune system, and in my case both IgA & IgM are at very low levels;
    • Further, if we subtract the monoclonal (worthless) M-Spike component of IgG from the total IgG, the remaining "good" IgG is also well below normal; so
    • I guess I really do have a compromised immune system. Not enough immunoglobulin goblins. **
    • Dr. KDS knows of a case where an immuno-compromised patient actually DID get shingles from the vaccine. Ouch.
    • I suggested using the killed-virus chicken-pox vaccine off-label as a shingles vaccine, but don't recall her response. It wasn't positive.
KDS on flu vaccines for myelomiacs, same advice as last month:
  • Get the 2009 H1N1 vaccine as soon as it is available to me. I am not in one of the highest-priority groups.
  • Get the seasonal flu vaccine when it is available to me.
Don's thoughts on flu vaccines for myelomiacs (Dr. KDS is not implicated in the following content :-)):
  • Seasonal Vaccine:
    • So far, the CDC is not seeing much seasonal flu. In their latest report, almost all of the viruse samples submitted to them in the week Oct 4-10 were found to be 2009 H1N1.
    • Therefore, we need not rush to get the seasonal vaccine, because there isn't much risk of encountering the virus yet. However:
      • The seasonal flu is at least as deadly as 2009 H1N1;
      • Tens of thousands of people DIE from it every year in the USA alone; and
      • Those of us with compromised immune systems are especially at risk; so
      • We definitely should get it well before the seasonal flu peak arrives. The past three seasons saw minor peaks around Christmas with the major peak in February.
  • 2009 H1N1 Vaccine:
    • Availability may be spotty because of the priority system, which is applied differently in different places.
    • Get it as soon as it is available, because the VIRUS IS AMONG US! Rampant in some schools.
    • In the meantime, we might be well advised to stay away from groups of people, especially young people.
    • Some doctors say that the vaccine might not do much good anyway, because compromised immune systems can't muster a proper response, but
    • To me that sounds like an excuse and not a reason. If it "might not" do much good then it also "might" do some good, and that's enough for me.
    • That same excuse could be used for skipping the seasonal flu vaccine, and no doctor suggests that.
    • I have not heard of any downside of the H1N1 vaccine, other than the rare problems that can occur with any flu vaccine. If you have heard otherwise, please comment.
We three have some airplane flights coming up, and have even talked about wearing medical masks in that wheezy, sneezy, huddled mass of humanity. We'll see!

** Halloween humor

I ate that
Salad as dinner.