70 Marathons, 50 States

Thursday, December 13, 2012:

We did it! Last Sunday we three all ran the Honolulu Marathon. For me, this completed the full circuit - a marathon in each state. The nations's 50th state was also my 50th. More about the marathon. We don't yet know what 2013 will bring, but we'll be running.

Pomalidomide Trial:

Thursday Dec. 13 marked the end of my 62nd cycle of the study of pomalidomide, the drug that has kept my myeloma stable for four years and nine months. Result: Again, no change. I love that stuff. IgG dropped an insignificant amount, from 1270 to 1250 mg/dL, while M-Spike dropped a bit more, from 1.2 to 1.1 g/dL, though that drop is also probably not significant. Light chains are up a bit but the ratio is unchanged.

Other Blood Results:

We enjoyed Hawaii

Two liver markers, AST and ALT, were well above the top of their reference ranges. This has happened before, and this time my old body had seen a lot of physical stress in the preceding four days including a hot marathon and an eight-hour overnight flight, so I expect those markers will return to normal. LDH was also slightly high, probably due to the same stress. The white count was slightly off the bottom edge, but that's sort of normal for me, as is a red count hovering at the bottom edge. Lots of other important markers are just fine, though, including hemoglobin, platelets, calcium, and more.

Metformin:

People on one of the email lists have recently discussed metformin, a prescription drug used to treat diabetes. Some have reported that their myeloma stabilized after starting metformin, and some early laboratory studies have suggested that metformin isn't at all nice to myeloma cells. Even Dr. Durie has mentioned it. Metformin affects blood sugar in a rather specific way, and myeloma cells gobble up blood sugar like drunken sailors, so there is some possibility of an actual mechanism here. I discussed this a little with doctor LH, and we didn't get far with it, but you might try googling "myeloma metformin" and see what pops up. It's WAY too early to use metformin for myeloma, but stay tuned, who knows. It could end up as the kind of drug that's used in combination to enhance the effect of the big hitters.

ASH:

My sweeties and I did get to the ASH Conference in Atlanta for a day and a half, but I didn't get a chance to attend any of the talks or even review any of the abstracts. I did, however, get to look at all of the "poster talks," each of which describes an advancement in some aspect of hematology. Some of those have large implications, some small. Some are very preliminary, and others are in actual trials on actual human beings (as opposed to mice or whatnot). Somewhere near 200 of those posters were specifically about myeloma, and I think at least a dozen, maybe more, were about real human trials with new, interesting-sounding drugs. Furthermore, the very best papers on the most promising human trials were given as oral presentations and were not even shown as posters.

The point is: There's a lot of research going on in myeloma, and some of it isn't ten years away, some of it is right on the horizon. There is hope. Enjoy your exercise, eat excellent food, sleep right, and stick around for what's to come.

I hope to get a chance to read some abstracts and some papers, then blog about ASH a little. However, these are excellent sources of information about ASH:

• International Myeloma Foundation
• Myeloma Beacon
• Living With Multiple Myeloma

Most-Recent Test Results:

Test		Sep 20		Oct 17		Nov 15		Dec 13		Remarks
M-spike g/dL		1.0		1.0		1.2		1.1		\ Tumor marker down
IgG mg/dL		1210		1180		1270		1250		/ Tumor marker
Lambda mg/dL		2.61		2.38		2.92		3.25		L free light chains
Calcium mg/dL		9.7		10.0		9.6		9.3		OK
Creatinine mg/dL		1.1		1.3		1.2		1.3		Kidney, barely OK
HGB g/dL		15.1		15.7		14.7		15.1		Hemoglobin, fine
RBC M/uL		4.22		4.35		4.13		4.31		Red cells bottom edge
WBC K/uL		3.7		4.4		5.5		4.4		White cells, low
ANC K/uL		1.70		1.90		3.00		2.10		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.

61 Cycles and Still on Pomalidomide

Thursday, November 15, 2012:

IgG has been edging up slightly over the past few months. It dropped slightly last month, but this month continued the slow upward climb, from 1180 last month to 1270 mg/dL now. More significantly, M-spike jumped from 1.0 to 1.2 g/dL. Those are separate but related markers which can indicate the total tumor burden, the number of myeloma cells. Down is good, up is bad. HOWEVER, both IgG and M-spike have been this high before, and none of the other markers suggests a problem, so there is no reason to think seriously about alternative treatments yet. Pomalidomide has worked like magic for the past four and a half years, and most likely is continuing to work.

Dinner after Mayo visit.
All organic but the kiwi.

In discussion with Dr L, we noticed that my IgA has moved up into the reference range for the first time since my myeloma was diagnosed nine years ago, almost tripling from 33 mg/dL last month to 86 this month. She asked if I had been sick in the last month, and I said that I did fight off a cold, ending just this week. She replied that the immunoglobulins like IgA and IgG can bump upward when fighting off an infection, and the effect can last up to six weeks. Even M-spike can go up, though it isn't really a competent immunoglobulin. So I'm thinking that any increase in IgG or M-spike can probably be attributed to that cold, and my myeloma is still stable.

That's my story and I'm sticking to it, at least for another month.

Two other issues discussed with Dr L:

1. A recent news report connected a genetic mutation in the white cells with Alzheimers disease. Since myeloma is also a genetic mutation in white cells, I wondered if there was a connection between myeloma and Alzheimers. She said there was not, and in fact the amyloids that collect in an Alzheimers brain are not the same as the amyloids most commonly produced by myeloma.
2. One of our support group members had mentioned that his myeloma was actually first diagnosed by his opthalmologist, and I asked how that works. She said that advanced myeloma can result in a collection of (proteins?) that the opthalmologist can actually see inside the eye. Several of her patients were initially diagnosed by eye doctors.

Hawaii: My family and I have run a marathon in each of 49 states now. The remaining state is Hawaii, and we are registered for a marathon in Hololulu soon. Airline tickets are purchased, hotel reserved, we're fixin' to finish it up! Then what? We have already registered for one marathon in 2013, so plans are forming but not solid yet.

Most-Recent Test Results:

Test		Aug 23		Sep 20		Oct 17		Nov 15		Remarks
M-spike g/dL		1.0		1.0		1.0		1.2		\ Tumor marker up 20%
IgG mg/dL		1180		1210		1180		1270		/ Tumor marker up 8%
Lambda mg/dL		2.72		2.61		2.38		2.92		L free light chains
Calcium mg/dL		9.6		9.7		10.0		9.6		OK
Creatinine mg/dL		1.0		1.1		1.3		1.2		Kidney, OK
HGB g/dL		14.5		15.1		15.7		14.7		Hemoglobin, OK
RBC M/uL		4.09		4.22		4.35		4.13		Red cells, a little low
WBC K/uL		4.3		3.7		4.4		5.5		White cells, fine
ANC K/uL		1.90		1.70		1.90		3.0		Neutrophils, wowzer

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.

Dr. Brian Durie Discusses Nutrition

All organic except the beef,
which is 100% grass fed.

Dr. Durie is a well-known expert in myeloma, always up to date with the newest trial results, treatments, and diagnostic tools. In a way he is the doctor of all of us, through the International Myeloma Foundation.

Now he has done it again. Though he claims not to be an expert on nutrition, he gave a very up-to-date and on-point discussion of modern anti-cancer nutrition in his October 11 teleconference Living Well with Myeloma - 10 Steps to Better Nutrition. Click that link to get both the audio of his teleconference talk and a PDF file of the slides that go with the talk.

Proper nutrition, exercise, and sleep - these are ways that we myelomiacs can improve our own quality of life and even the course of our own disease. Dr. Durie's talk is a wonderful start.

Breaking News:

On October 18, Dr. Durie published a blog post responding to some of the questions raised in his teleconference talk. Also recommended reading.

Be fit, be strong, be well.

Stable After 60 Cycles

Wednesday, October 17, 2012:

Last month IgG edged up slightly from 1180 to 1210 mg/dL, and this month it dropped back to 1180. M-spike has been at 1.0 g/dL (1000 mg/dL) for several months now. Lambda light chains dropped from last month, while kappa chains increased, so the ratio increased, and that's supposed to be good. After 60 cycles on the pomalidomide (CC-4047) study, 28 days each, my myeloma remains solidly stable.

Naturally I have some favorable opinions about pomalidomide, which I expressed in a previous post. Hopefully, it will be approved by the FDA soon.

My family and I have run a marathon in each of 48 states now, in our quest for all 50. Albuquerque, New Mexico is next, and finally Hololulu, Hawaii in December. We're having a good time and coming toward the finish. More about running in my running blog and my sweetie's blog.

Most-Recent Test Results:

Test		Jul 26		Aug 23		Sep 20		Oct 17		Remarks
M-spike g/dL		1.0		1.0		1.0		1.0		\ Tumor marker no change
IgG mg/dL		1090		1180		1210		1180		/ Tumor marker down slightly
Lambda mg/dL		2.30		2.72		2.61		2.38		L free light chains
Calcium mg/dL		9.7		9.6		9.7		10.0		OK
Creatinine mg/dL		1.1		1.0		1.1		1.3		Kidney, a bit higher
HGB g/dL		14.5		14.5		15.1		15.7		Hemoglobin, great
RBC M/uL		4.05		4.09		4.22		4.35		Red cells, a little low
WBC K/uL		4.9		4.3		3.7		4.4		White cells, low
ANC K/uL		2.20		1.90		1.70		1.90		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.

59 Cycles, Still Stable

Thursday, September 20, 2012:

Dr. James Berenson, well-known myeloma doctor, has said that "there is little difference between complete response and stable disease." I believe that, and I'm really quite happy with continued stable disease. I've been in the pomalidomide (CC-4047) study for four and a half years now, 59 cycles, each 28 days. IgG went up 3% from 1180 to 1210 mg/dL, but M-spike remained constant at 1.0 g/dL (1000 mg/dL). Lambda free light chains dropped slightly, while kappa chains increased a bit, but all markers were well within the range that we have observed in recent cycles on the study. Basically, there is no change. It's all good - hoist a pint with me.

Pomalidomide:

Nine years ago, at age 62, my primary doctory called and said "I have made an appointment for you with an oncologist." Fortunately my myeloma was only smoldering then, with no symptoms. Five years later though, after two therapies had failed to halt the cancer's upward climb, a PET scan revealed lesions (holes) in my bones, Stage I disease. A better treatment was needed. Dr. L suggested the trial, 2 mg pomalidomide (CC-4047) daily, with once-weekly dexamethasone (DEX). After the first four cycles, both IgG and M-spike had dropped by more than half, to levels not seen in years, and they continued downward. The DEX was gradually reduced to zero over a year and a half, and M-spike has been stable at about 1.0 to 1.2 g/dL on pomalidomide alone for three years. PET scans and X-rays suggest that the bone lesions are inactive and have probably been repaired.

My family and I attend support group meetings at least once a month, and I know how incredibly lucky I have been, to escape for nine and a half years with no disabling injuries or significant drug side effects. We are still running marathons (see Make It A Masterpiece), almost one a month lately, and have only three states remaining in our quest to run a marathon in each of the 50 states. That has all happened since diagnosis, mostly in the pomalidomide years. By December we hope to run marathons in New Hampshire, New Mexico, and Hawaii, finishing the 50 states.

The credit goes to pomalidomide, of course. I do take very good care of myself, with plenty of excellent food, exercise, and sleep, but those two little milligrams of "pom" are most certainly the key. Not only is pomalidomide keeping me alive and thriving, but it's a very easy therapy to take, just one little pill every day. Life is full and I feel blessed. Not everyone's myeloma responds to pomalidomide as mine has, but it is my miracle drug. Happily, it has been submitted for FDA approval and may be widely available next year.

Most-Recent Test Results:

Test		Jun 29		Jul 26		Aug 23		Sep 20		Remarks
M-spike g/dL		1.0		1.0		1.0		1.0		\ Tumor marker no change
IgG mg/dL		998		1090		1180		1210		/ Tumor marker up slightly
Lambda mg/dL		3.11		2.30		2.72		2.61		L free light chains
Calcium mg/dL		10.2		9.7		9.6		9.7		Great
Creatinine mg/dL		1.0		1.1		1.0		1.1		Kidney, OK
HGB g/dL		14.7		14.5		14.5		15.1		Hemoglobin, OK
RBC M/uL		4.15		4.05		4.09		4.22		Red cells, a little low
WBC K/uL		4.9		4.9		4.3		3.7		White cells, low
ANC K/uL		2.30		2.20		1.90		1.70		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.

Hoist a Pint

Thursday, August 23, 2012: 

At the end of the 58th 28-day cycle of the pomalidomide (CC-4047) study, my myeloma markers remain stable. IgG went up 8% to 1180 mg/dL, but M-spike remained constant at 1.0 g/dL (1000 mg/dL). Lambda free light chains increased a little, while kappa chains decreased a bit, but both were well within the range that we have observed in recent cycles on the study. Basically, the measurements are all within their recent envelopes, so there is no change.

Oatmeal underneath

I recently heard from a woman who just lost her husband to myeloma. He and she had done their best, trying every possible therapy before his myeloma finally overwhelmed them all. In celebration of his life, she said "Raise a pint for George."

I have done that. Tonight I've raised another pint to celebrate one more month that my own tiger remains in its cage. If you are inclined to hoist one too, please be my guest.

Most-Recent Test Results:

Test		May 29		Jun 29		Jul 26		Aug 23		Remarks
M-spike g/dL		1.1		1.0		1.0		1.0		\ Tumor marker no change
IgG mg/dL		1140		998		1090		1180		/ Tumor marker up slightly
Lambda mg/dL		2.53		3.11		2.30		2.72		L free light chains
Calcium mg/dL		9.7		10.2		9.7		9.6		Great
Creatinine mg/dL		1.2		1.0		1.1		1.0		Kidney, OK
HGB g/dL		15.7		14.7		14.5		14.5		Hemoglobin, OK
RBC M/uL		4.37		4.15		4.05		4.09		Red cells, a little low
WBC K/uL		4.6		4.9		4.9		4.3		White cells, OK
ANC K/uL		1.80		2.30		2.20		1.90		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.

Frank Vondrashek died Sunday, August 5, 2012

With Eve Friedli, Frank co-founded the Myeloma Support Group in Rochester, Minnesota. Last January his myeloma numbers were OK, but he was tired and out of breath, with a low white cell count. His ten years of myeloma treatments had given him acute myeloid leukemia. After a valiant battle, he succumbed to that disease this morning.

Visitation is Thursday evening, August 9, and the funeral is Friday morning, August 10. Here is the obituary with details.

The Rochester myeloma support group will survive, but we will miss you Frank.

Chuck Hohn Died July 28

Charles Edward Hohn (Chuck) has been a regular member of the Stillwater support group, looking for answers to his very aggressive myeloma.  He had entered hospice a couple of days before his death.

Obituaries:

• Star Tribune:  http://www.legacy.com/obituaries/startribune/obituary.aspx?n=Charles-Hohn&pid=158833145#fbLoggedOut
• Pioneer Press:   http://www.legacy.com/obituaries/twincities/obituary.aspx?n=Charles-Hohn&pid=158798311#fbLoggedOut

We will miss you Chuck.

Bradycardia

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.

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	Gizmodo.com	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	EverydayHealth.com	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.

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!

From Mission Control - All Systems Nominal

Sunshine mentioned that it's like we're orbiting earth, getting a systems report from Mission Control once every 28 days. Although there's no reason to expect anything wrong, it's always a possibility. Happily, we have good news again today, at the end of our 56th orbit on the miracle drug pomalidomide.

IgG is down for the third cycle in a row, this time down from 1140 to 998 mg/dL, about 12% lower. Similarly, M-spike is down from 1.1 to 1.0 g/dL, about 9% lower. Lambda light chains did go up a bit, and the ratio went down, but I'm not sure what that means, nor is the doctor, so we're not worrying about it.

Most-Recent Test Results:

Test		Apr 04		May 04		May 29		Jun 29		Remarks
M-spike g/dL		1.1		1.1		1.1		1.0		\ Tumor marker down
IgG mg/dL		1290		1210		1140		998		/ Tumor marker down
Lambda mg/dL		2.24		2.75		2.53		3.11		L free light chains
Calcium mg/dL		9.6		10.0		9.7		10.2		A little high
Creatinine mg/dL		1.2		1.0		1.2		1.0		Kidney, OK
HGB g/dL		14.6		15.6		15.7		14.7		Hemoglobin, OK
RBC M/uL		4.08		4.31		4.37		4.15		Red cells, a little low
WBC K/uL		6.1		5.3		4.6		4.9		White cells, OK
ANC K/uL		1.50		2.70		1.80		2.30		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.

Summer supper, tonight's dinner: Chicken leg, squash, sweet potatoes, onions, legacy tomatoes, mustard, all organic: