Saturday, July 28, 2012


Cycles in the pomalidomide study are 28 days long. Every third cycle, the protocol calls for an electrocardiogram - I'm not sure why. The comments on mine always say "Marked sinus bradycardia, otherwise normal ECG." Today's was the same - no significant change from the previous ECG in early May. No problem.

From the Saturday Evening Post, July / August 2012
Bradycardia simply means that the resting heart rate (pulse rate) is low, in this case 43, when a rate of 60 or more would be normal. My heart rate is lower than normal because I'm a runner - it gradually went down within a few months after I started running ten years ago. This is not a problem - many runners have lower heart rates, as do other endurance athletes.

Since the total number of beats in a week or a month is far fewer than otherwise, even considering the higher heart rates during our runs, we like to tell ourselves that our hearts won't wear out as soon as they might. It's total rubbish, I suppose, because hearts don't wear out, they fail from disease, but you never know.

I'm going on about bradycardia because the myeloma results are boring, except to me. IgG is up 9% from 998 to 1090 mg/dL, but it bounces up and down, and M-spike is stable at 1.0. Stable is good - in fact it's wonderful, lifegiving. Someday M-spike will start to rise, as myeloma seems to require, but not today. Lambda light chains are down too, as is the kappa/lambda ratio.  All good.

Most-Recent Test Results:

Test    May 04    May 29    Jun 29    Jul 26     Remarks
M-spike g/dL 1.1 1.1 1.0 1.0 \ Tumor marker no change
IgG mg/dL 1210 1140 998 1090 / Tumor marker up slightly
Lambda mg/dL 2.75 2.53 3.11 2.30 L free light chains
Calcium mg/dL 10.0 9.7 10.2 9.7 Great
Creatinine mg/dL 1.0 1.2 1.0 1.1 Kidney, OK
HGB g/dL 15.6 15.7 14.7 14.5 Hemoglobin, OK
RBC M/uL 4.31 4.37 4.15 4.05 Red cells, a little low
WBC K/uL 5.3 4.6 4.9 4.9 White cells, OK
ANC K/uL 2.70 1.80 2.30 2.20 Neutrophils, OK

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.

Sunday, July 22, 2012

E-Race Cancer Media Stories

After running 50 or so marathons on our own, my family and I joined up with Team Continuum and Tackle Cancer last year. Both were started by men with myeloma, both raise money to benefit families with children who have cancer, and both have research goals as well.

This is the E-Race Cancer campaign, which has resulted in several media stories about my running. I've never really been a public person before, but I must admit that this is sort of fun.

This list is a nice, clean-looking table.  If it looks messed up, try widening your browser window:

Date   Media/Place   What  Link
2012 Jul 07 Burlington VT Free Press Print & Internet Internet Story
2012 Jun 28  Living with Myeloma Pat Killingsworth blog Internet Blog
2012 Jun 26 Alaska Public Radio Web video story Internet Video
2012 Jun 25 KYUR/KTBY Anchorage  ABC and Fox TV story Internet Video
2012 Jun 25 KTUU TV Anchorage TV news story Internet Video
2012 Jun 21 Anchorage Daily News Print story, Don is toward end   Internet Story
2012 Jun 17 KSTP TV Mpls/St Paul TV sports story, John Gross Internet Video
2012 Mar 08 Bay Weekly, Annapolis Print & Internet Internet Story
2011 Dec 14 Internet news story Internet Story
2011 Dec 12   Brazil TV news story Internet Story
2011 Nov 30 Alternative Medicine Mag   Internet news story Internet Story
2011 Nov 29 CNN Video CNN on "American Morning" Internet Video
2011 Nov 04 Internet news, six people Internet Story
2011 Oct 24 Business Wire Internet news story Internet Story
2011 Oct 23 Mpls StarTribune Print story, Tim Harlow Internet Story
2011 Oct 17 For Colored Gurls Internet story & video Internet Story
2011 Oct 15 WFSB TV Hartford, CT TV news wrapup Internet Video
2011 Oct 13 Kick Runners Forums Internet news story Internet Story
2011 Oct 02 WCSH6 TV Portland, ME TV news story, Jackie Ward Internet Video
2011 Sep 30 Portland Press Herald Print story, Glenn Jordan Internet Story
2011 Sep 16 WJET TV Erie, PA. TV news story Internet Video

We have now finished 65 marathons in 46 states. We have finished four marathons so far this year, and are registered for marathons in the four remaining states (West Virginia, New Hampshire, New Mexico, and Hawaii). If all goes well, we will finish in December.

A permanent link to this list is located in the right panel under E-Race Cancer Links. The list will be kept up to date.

Friday, July 20, 2012

Carfilzomib (Kyprolis) Is Approved by FDA

Onyx Pharmaceuticals announced today that their investigational drug carfilzomib has been approved by the FDA for treatment of myeloma, and is now available for prescription by doctors under the trade name Kyprolis. Here is the Onyx press release.

Kyprolis is a proteazome inhibitor, which means that it works rather like Velcade does, but in studies it seemed to be at least as powerful and caused much less neuropathy. It is approved for patients who have received at least two prior therapies. In my (nonmedical) opinion, however, when doctors have gained confidence in Kyprolis' efficacy and safety, they will begin to prescribe it for newly-diagnosed patients, as they have done with other drugs.

In particular, a recently-published study has shown that Kyprolis in combination with Revlimid and dexamethasone produced a 100% response in newly-diagnosed patients, with 64% of patients achieving a stringent complete response, meaning that their myeloma was undetectable.  In my (nonmedical) opinion, this combination will be hard for doctors to resist.

Kyprolis is administered in a 2- to 10-minute infusion in a clinical setting.  It is the first-approved of two innovative and potent drugs recently submitted for approval to the FDA.  The other is pomalidomide, by Celgene, an oral drug (a little pill taken at home) which will hopefully be approved in early 2013.  Pomalidomide has kept my own myeloma stable for well over four years now.

Right now the cure for myeloma is to stay alive long enough to die of something else.  Kyprolis, and soon pomalidomide, will give us two more tools to make that happen.  Lots more is happening in the labs.  Stick around, there is hope!