Saturday, September 25, 2010

US 52 Was Under Water

We three drive down US 52 from the east side of St Paul to Rochester once every 28 days for my checkup at Mayo Clinic. It's the shortest, fastest route. Usually we get up at 3:50 am, take an hour to shower and get ready, then 90 uneventful minutes later I'm in line for my 6:30 am blood draw. We knew that Thursday would be different, because of the heavy rain, but we didn't know how different. A check of MNDOT's Traffic Conditions Website showed that US 52 was closed, so we went another way - no fun driving in "driving" rain, but US 61 & 63 were open and it took us only about a half hour longer. Heading back, that MNDOT web site said that US 52 was open again, so we started out that way. Just a few miles south of Pine Island, though, we found water rushing across the four-lane highway. Some vehicles were crossing it, but some were not and we turned around. Police were conspicuously absent. At 5 pm the local news said that US 52 was closed right where we encountered the water.

We later discovered that the city of Pine Island had in fact become an island, though it normally is not.

IgG versus M-Spike:

IgG is a measure of ALL Immunoglobulin G proteins, good and bad, where M-Spike is a measure of just those Immunoglobulin G proteins that are monoclonal, the bad ones, all exactly the same. Medically, M-Spike can never be higher than IgG. Thursday my IgG was 1070 mg/dL, but M-Spike was 1200 mg/dL (1.2 g/dL). Not possible. I hate that! I was feeling pretty good about another "stable" result until that M-Spike came bombing in.

I asked Dr KDS about this impossibility - which number is most likely to be wrong? She wasn't sure, but assured me (paraphrasing here) that she has seen this before, because both tests have an error tolerance, but that she was NOT worried. Further, I'm still stable and, as always, let's see what next month brings.

Sigh. I fret about this stuff, and was hoping for a fret-free 28 days. I've been on the pomalidomide (CC-4047) study for 33 complete cycles now, and it has done a fine job of keeping me stable. Nevertheless, I know that the ride will end some day and I will need to take a different course of drugs that may have much worse side effects. So I'm always wondering if that time is near and hoping that it isn't.

For now, though, I'm going to try to convince myself that the M-Spike number is wrong. There is nothing in the other cancer markers to suggest an increase in tumor burden. Calcium is fine, kidneys are fine, liver is fine, and light chains are not much changed. In fact, an IgG measurement of 1070 mg/dL is actually a decrease of 3% from August and 8% from July. We'll go with that.


Mayo Clinic will soon start a trial of this brand-new drug. Carfilzomib is a proteasome inhibitor, like Velcade, at least as effective but much less likely to cause painful neuropathy. Furthermore, it can be effective in patients for whom Velcade has failed. I blogged about it here. I'm not sure what it will take to qualify for the trial, but if you go to Mayo you might ask about it.


I am not a medical doctor, so you shouldn't believe anything that I say. Nevertheless: If you are offered twice-weekly Velcade as a treatment, just say NO. Twice-weekly infusion is still the official, approved regimen, even though several studies have shown that once-weekly infusion is much less likely to cause painful neuropathy in most patients. In addition, there can be a threshhold effect: if a patient on twice-weekly infusions does develop neuropathy, switching to once-weekly may not help the neuropathy much. Once you get the neuropathy it's yours to keep, and any amount of Velcade will reactivate it. A patient who starts out with once-weekly infusions, however, is much less likely to develop serious neuropathy in the first place. If your doctor insists on starting out with the official twice-weekly protocol, change doctors. No kidding. Velcade is an excellent drug, but it's useless if the neuropathy prevents you from taking it.

Some current test results:

Test    Jun 29    Jul 29    Aug 24    Sep 23     Remarks
M-spike g/dL 1.0 1.1 1.1 1.2 Best tumor measure?
IgG mg/dL 1120 1160 1100 1070 Best tumor measure?
L FLC mg/dL 1.74 1.86 2.79 2.58 L Free light chains
Calcium mg/dL 9.9 9.9 10.1 10.0 Below 10.2 is OK
Creat mg/dL 1.2 1.0 1.3 0.9 Kidney, OK
HGB g/dL 14.5 14.0 15.7 15.8 Hemoglobin, OK
RBC M/uL 4.30 4.16 4.39 4.43 Red cells, OK
WBC K/uL 3.4 2.8 4.4 4.2 White cells, OK
ANC K/uL 1.09 0.93 1.41 1.60 Neutrophils, low

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 Somewhat technical. Best with a wide browser window.
My Supplement Regimen With links to where I buy them.


  1. So interesting that another study is showing that less of a drug is better for you. There was also that study a few years ago that showed patients on lower-dose dex lived longer than patients on high-dose dex, too. Thanks again for posting all of your numbers! :)

  2. That bowl of fruit looks yummy!

    Glad to hear you are stable.

  3. Glad you made your trip safely Don. As always I learnt much from this post and thank you for that.
    It is comforting to know you are keeping stable and I send all best wishes to you and Sunshine.

  4. So sorry to hear of the incongruous numbers - don't fret, trust the doc and the other numbers show stability and that is what counts. Yes, thanks for posting your numbers, it is helpful.
    I am trying to post some of mine by creating a table on Word and then copy to the blog but on preview, they looked expanded, like the height got adjusted into double space. How to correct this?

  5. Hello Lileng,

    In Dashboard -> Settings -> Formatting -> Convert Line Breaks, change Yes to No and see if that helps.

    Unfortunately that will (temporarily) affect your entire blog, so you may want to put it back to Yes. But if it helps, it will give you the idea that unnecessary line breaks are the problem.

    Thanks for your comments. Hello Singapore! - Don