Saturday, September 19, 2009

Mayo Clinic Visit Thursday, September 17, 2009, end of Cycle 20

Every treatment for myeloma seems to fail eventually. Somehow the cancer evolves, and the M-spike starts to climb again. On this Phase II trial of pomalidomide with dexamethasone (DEX), M-spike is checked every 28 days. It had been stable or dropping in recent months, but this time it went up, from 0.8 to 0.9 g/dL. Furthermore, this appears to be a real change, because IgG also went up 9%, from 979 to 1070 mg/dL, the highest level since February. Lambda light chains increased too.

But the news isn't quite as scary as it sounds. First, a small increase in M-spike doesn't necessarily mean that the bottom has been reached - we have seen M-spike go up before and then come back down again. It's happened twice already this year. Second, the increase in IgG could be due to an immune-system response to some sub-clinical invader in my body. In fact this seems fairly likely, because my white count and neutrophils are up slightly from last month and eosinophils are through the roof. Something may be going on besides myeloma at the moment.

Bottom lines:
  • I'll have to wait another month to see if M-spike is really turning upward again. I sure hope not - it would be wonderful to get a nice, long ride from pomalidomide, because the drug regimen is relatively easy to take. When it fails, I will no doubt need to switch to something with more side effects.
  • This uptick in M-spike coincides exactly with a reduction in the DEX dosage from 8 mg to 4 mg once weekly. So my hopes of going off DEX in the upcoming cycle are null and void. In another 28 days we'll see.
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."

Some recent test results:

Test Jun 25   Jul 23   Aug 20   Sep 17  Remarks
M-spike g/dL 0.9 0.8 0.8 0.9 Best tumor measure
IgG mg/dL 1010 1010 979 1070 Variation is normal
L FLC mg/dL 2.63 1.95 2.07 2.54 L Free light chains
Calcium mg/dL 9.6 9.7 10.0 9.9 Below 10.2 is best
Creat mg/dL 1.0 1.1 1.0 1.1 Kidney, lower is better
HGB g/dL 14.0 14.8 14.5 14.7 Hemoglobin, normal
RBC M/uL 3.93 4.13 4.01 4.08 Red cell count, low
WBC K/uL 5.6 3.9 3.7 4.1 White cells, normal

Discussion with Dr. KDS:

  • Peripheral neuropathy from the pomalidomide might be a little worse. It measures the same, but may have increased in areas that I don't measure, such as the backs of my hands. It does not interfere in my lifestyle in any way. There is no sensation from it unless I'm stepping on my feet.
  • There are no red bruise marks on my arms this time. Did the reduction to 4 mg DEX make my skin less sensitive to bruising?
  • I'm probably not getting slower (running) any more - maybe a little faster, though that may be psychological.
  • Wants me to stay on the current 4 mg dosage of DEX for at least 2 cycles before discontinuing it. So at least one more.
  • DEX can cause steroid-induced myopathy, but my modest reduction in muscle capacity does not qualify.
  • Muscle wasting is probably reversible if DEX can ever be discontinued.
  • There is some risk of avascular necrosis of the hip with long-term DEX usage, but she can't quantify it. Balance that unknown risk against the other unknown risk of dying sooner from myeloma. Yikes.
KDS on Flu Vaccine:
  • Get the 2009 H1N1 vaccine when it is available to people in my risk stratum. Immuno-compromised old people are at the top of the "second tier."
  • According to the CDC (I looked this up): First tier is pregnant women, then health care workers, then all people age 6 months to 24 years, then people age 25-64 who have health conditions which put them at extra risk. Those first-tier groups comprise about half the population!
  • Those of us who are over 64 probably have some immunity already, so we go later, even if we are immuno-compromised.
  • Get the seasonal flu vaccine no later than November, but maybe sooner if the "regular" flu season (ignoring 2009 H1N1) seems to be peaking early.
  • The two vaccines can be taken on the same day.
  • Here is a link to the CDC 2009 H1N1 Flu Page.
  • Here is a link to the CDC Weekly Update on Seasonal Flu.
My own flu shot advice: Keep in mind that I am an engineer and not a doctor, so feel free to IGNORE THIS ADVICE: Be sure to get the seasonal flu shot, because it may be at least as important as the 2009 H1N1 shot. Tens of thousands of people die every year from seasonal flu, especially immuno-compromised people.

Monday, September 14, 2009

MMRF Race for Research 5k Run/Walk

Jim & Don at the race Sunday, September 27, 2009, start time 9:00 am, come early.

The Multiple Myeloma Research Foundation (MMRF) holds an annual 5k run/walk at Lake Phalen Park in St Paul, Minnesota. It is a fun event which helps raise money for myeloma research, $120 million and counting.

Click HERE and then click "Register as an Individual" or "Register as a Family" on the left-hand panel.