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.


  1. I hope that the calsium level goes down.
    Maybe a good idea before counting takes place here to stop calsium.

    Today I have ordered Ashwagandha, coincidentally the same brand.

    I'm thinking also calsium to take, but that does not increase the calsium level in the blood?



  2. Hi Hans,

    Dr KDS has quoted a study which found that calcium supplements do not increase the blood calcium level as measured after a 12-hour fast. But I'm a little skeptical.

    Until the last two months I have always skipped calcium supplements for at least one day before the tests, usually two days, and I'll go back to that now.

    If the test is reading calcium from supplements, that is not a problem. Calcium in the blood doesn't hurt anything. But if the test shows calcium high even without supplements, that can indicate that bone damage is occurring.


  3. Hi Don, just wanted to rectify that, while it is true that I have written several posts on ashwagandha, I took it only for one month, not for several. Also, my total IgG, unless Stefano's calculations are wrong, went down almost 35%. Well, I am oh so curious to see what it does to your numbers!

    About H1N1. Did you read my post about what Dr. Durie had to say about the H1N1 vaccine? Also, one of my blog readers posted a link to a 60 Minutes report from 1976. I think that all those considering the H1N1 vaccine should watch this story, as well as the other, more recent news reports on this vaccine. I just watched a few on YouTube...and I find the entire business very very scary. I will probably have the regular flu shot, but that is it.

    If you go ahead with the H1N1 vaccine, Don, please make sure it doesn't contain any thimerosal.

    Thanks for the update, as usual! :-)

  4. Hi Margaret,

    Here's my calculation: (39.9-29.7)/39.9 = 25.6%. Anyway your IgG went down a LOT! Good for you.

    Yep I saw what Dr Durie said, but Mayo Clinic doesn't agree and I don't either. The swine flu vaccine is very similar to the seasonal flu vaccine, just calibrated to H1N1. In my risk calculation, I believe the risk of serious health problems from H1N1 or seasonal flu is greater than the risk of Guillain-Barre or some other problem from the shot itself, especially since I've had flu shots before with no complications. I'll get the shot when it's available.

    I'm no fan of thimerosal, but will probably take whatever vaccine I can get. And I'll probably take some of the supplements you suggest as well. I wonder if there is a supplement that will help carry away the thimerosal.

    Thanks for your comments! I hope NEITHER of us gets either flu. Or Stefano, or my sweeties.

    I got rear-ended on the freeway last night, so if I seem grumpy maybe I am. :-)

  5. Don, is the H1N1 vaccine available up at Mayo yet? I keep calling my cancer center down here in KC, and they don't have it, but I will be making a trip up north next week ...

  6. I didn't ask, Karen. You're in a risk group that should have a fairly high priority. Call your onc and ask.


  7. Thanks, Don! My doc here did tell me to get one; they just don't have them yet! Hopefully Mayo has a supply!

  8. Don,
    Your the man for peripheral neuropathy.
    I have made a posting about my peripheral neuropathy reduction on my blog and linked to your blog and your peripheral neuropathy postings.
    Very helpful information thank you.

  9. Don, I really do recommend wearing a surgical mask, with a little vaseline placed in the tips of your nostrils. Also cheap cotton gloves that can be disposed or washed for re-use. Being in a cabin for any length of time is so dangerous now with this Swine Flu, I am sure you know all this. Poor Hamada I am sure, has survived this long (extremely low white counts) because we adopt the masks even for all clinic visits.
    While I am here, just to let you know that this week my Anthology of Poems has been published. It is a beautiful book and I am so thrilled. Proceeds going to Multiple Myeloma of course. all details are on: they are selling very fast indeed and are great for a special Xmas gift.
    All best Wishes to you and also to Sunshine.

  10. As soon as my appetite and stomach issues resolve I am getting some peaches and avocados...that picture looked amazing!

    I can't wait to see your results next month. -Phi

  11. My dad just got diagnosed with myeloma. I dont really understand much of this post but I'm going to pass it on to my parents who probably will.

  12. Do you still take Ashwagandha? Did it make any difference? My dad was talking about it and he wants to try it?

  13. No, it didn't seem to make any difference in my blood tests. However, by that time I was already on the study drug pomalidomide, so that might mask any benefits of ashwagandha.