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:

John Hunt Died Monday

John Hunt, a 15-year member and one of the founders of the Twin Cities myeloma support group, died Monday, June 25, of sudden heart problems which were likely due to amyloid deposits from his myeloma.

John was known for his brilliance, kindness, and sense of humor.  With his knowledge of biology, he had much advice and wisdom to offer.  We were honored to call him a friend. Our thoughts are with his wonderful family who opened their lovely home to us in the group's early days.

His service will be at:

St. Frances Cabrini Church
1500 Franklin Ave. S.E., Minneapolis, MN
Saturday, July 7, at 11 a.m., with visitation for an hour prior to the service.

Obituary: Legacy.com

We miss you already John.

KSTP Channel 5 Story

Last week KSTP TV, the Twin Cities' ABC affiliate, interviewed me and my gals for a 2-minute piece about our running, 50 states, cancer, and whatnot. That story showed on the news Sunday morning, June 17, and is now on the internet here.

One of the reasons we run is to raise money for Team Continuum and Tackle Cancer Foundation. If you feel inclined.

Highlights from ASCO 2012

According to me. I'm not a doctor, I'm an impatient patient, and pretty choosy about my highlights. They have to be about myeloma in some way, and should have the potential to affect my own myeloma journey.  Here are three:

• Carfilzomib and Pomalidomide continue to star: Carfilzomib is a new proteasome inhibitor, similar to Velcade, but without the neuropathy and with the ability to help some people for whom everything else has failed, including Velcade. Pomalidomide is a new immunomodulatory drug, like thalidomide and Revlimid, but with fewer side effects and with the ability to help some people for whom everything else has failed, including Revlimid and thalidomide. Studies also show that these two drugs together are amazing with newly-diagnosed patients. Both drugs are on track for possible FDA approval yet this year. Two more arrows in the quiver, possibly better than any of the other arrows.
  
  
• Elotuzumab: This strange duck is a monoclonal antibody, similar to the antibodies that our own body creates. It specifically seeks and destroys goofy plasm cells (myeloma cells). For some reason, though, it doesn't work by itself. It wants company. When added to Revlimid, it can often turn the disease around even in patients for whom Revlimid is failing. So far it has been used mostly with patients whose previous treatments have failed, but the work goes on.
  
  
• Zometa isn't so bad after all: The pendulum has clearly swung again, from Aredia (pamidronate) back to Zometa (zoledronic acid). Yes, it causes more osteonecrosis of the jaw (ONJ), in as many as 4% of patients compared with 1% for Aredia, but it has advantages: (1) The infusion time for Zometa is far shorter than the infusion time for Aredia; (2) Fewer infusions are needed; and (3) Most important, Zometa has an anti-myeloma effect of its own, and in a recent study people on Zometa actually lived longer than people on Aredia. So go for the Z, but get your dental work done first, and brush and floss like crazy.

For more, visit the other five posts from ASCO:

• ASCO Post # 1 Saturday morning, the Rajkumar tutorial - how to treat new patients.
• ASCO Post # 2 Sunday morning, the other really good myeloma stuff.
• ASCO Post # 3 More from Saturday morning.
• ASCO Post # 4 Monday, Immunotherapy.
• ASCO Post # 5 Monday, big myeloma poster session.

That's it from ASCO. We're riding the train home.

A new park along Chicago's Lakeshore Trail just south of McCormick Place, site of ASCO:

ASCO 2012 - Blog Post # 5

Monday Posters
Revlimid and Stem Cell Collection:

Dr Divaya Bhutani performed a retrospective review of 310 consecutive patients, and discovered that patients who had been on Revlimid may require one more collection session that patients who had not. However, there was no difference in recovery after their stem cell transplant.

Second Primary Cancers in Myeloma Patients:

Dr Giampaolo Talamo, Penn State University, performed a retrospective analysis of the records of 320 consecutive MM patients between 2006 and 2010. Two conclusions:

• Most patients had already experienced some form of cancer before their myeloma. For them, myeloma was the second cancer.
• Their data did not indicate that Revlimid could be a carcinogenic factor in most of the second cancers they found among their patients.

Rescue by Second Autologous Transplant

Dr Wilson I. Gonsalves, Dr Shaji Kumar, and others at Mayo Clinic examined the outcomes of 105 patients who underwent a second auto transplant for relapsed myeloma. Five percent died, but the rest achieved a median survival of 33 months. Those who had a long-duration response to their first transplant fared best.

Prognostic Value of LDH in Myeloma:

Dr Krina K. Patel examined records of 1247 myeloma patients all the way back to 1974 to determine the correlation between lactate dehydrogenase (LDH) at diagnosis to their length of survival. A value of 300 IU/L was the threshhold. She found that those with LDH greater than 300 IU/L lived just 16 months, while those with HDL under that mark lived 47 months, about three times as long. I don't know if this is really news, but it does appear that LDH can be used as a poor-man's cytogenetics, flagging those patients who are now called "high-risk."

Revlimid/Dex Long Term:

Dr Geetika Srivastava and others at Mayo Clinic studied 286 consecutive patients who received Rev/dex as initial therapy. The overall response was 86%, and, for those, the median time to first disease progression (for those who did not follow with an immediate transplant) was 25 months. Median overall survival was 7.4 years for those 65 and under, 6.2 years for those over 65. Conclusion: It works.

ASCO 2012 - Blog Post # 4

Immunotherapy for myeloma - three papers
All three describe studies with agents having names ending in "mab," which means monoclonal antibody.

Siltuximab with Velcade:

Dr Robert Z Orlowski. In this Phase II study, siltuximab did not provide benefits sufficient to outweigh its side effects. However, Dr Orlowski is still hopeful that siltuximab might be of benefit in different in combination with other agents. Such a study is currently underway with high-risk patients.

"There is no failure, only feedback." - Robert Allen

Daratumumab:

Dr Torben Plesner described the results of a Phase I study with a small number of patients who had received at least two prior therapies, most of them including a stem cell transplant. The early data showed a good response, and the maximum tolerable dosage has not yet been found. This is a good one to watch.

Elotuzumab:

Dr Philippe Moreau. Elotuzumab is a humanized monoclonal antibody targeting a protein which appears almost exclusively on myeloma cells. In this Phase I/II study with patients having 1 to 3 prior therapies, elotuzumab was added to Revlimid/dex and the combination produced a very good overall response rate of 84% with only modest side effects. This drug shows no benefit when given alone, but substantially increases the effectiveness of Revlimid, and quite likely other drugs. Further, there is an optimum dosage; the study showed that a dose of 10 mg (per meter squared) actually produced better results than 20 mg. Makes you wonder if 5 would be even better.