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:

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.

ASCO 2012 - Blog Post # 3

Yesterday (Saturday), Dr Rajkumar from Mayo Clinic presented a tutorial on the treatment of newly-diagnosed myeloma patients. Here are a few more interesting nuggets from that day's presentations and poster sessions:

Transplant Eligibility:

Would you transplant this man? Clint Eastwood is 82 now, but Dr Amrita Krishnan thought perhaps he might nevertheless be a candidate for transplant. Her point was that numerical age is not itself a factor. Rather, the physical issues ("comorbidities") that often come with age are factors, by themselves, including kidneys, heart, liver, and other diseases such as diabetes.

Pomalidomide and Dex with Clarithromycin:

Clarithromycin (Biaxin) is an antibiotic, available by prescription since the 1970s. Since at least 2001, researchers have known that it has an anti-myeloma effect when added to dexamethasone or other standard myemoma therapies. In this study, Dr Adriana C. Rossi demonstrated a significant and sustained response to this 3-drug combination in heavily pretreated patients, better than pomalidomide/dex without clarithromycin.

Baseline Sensory Deficits Predicting Neuropathy in Treatment:

Dr Elisabeth G. Vichaya measured patients' sensory detection before treatment with chemotherapy, and compared that with the neuropathy that patients experienced in chemotherapy. She found:

• Patients who were initially less able to detect sharpness (e.g. a pin) experienced LESS pain and numbness than others;
• Patients who were initially less able to detect warmth experienced MORE pain and numbness; and
• Those with lower initial skin temperatures also experienced MORE pain and numbness.

She thought perhaps that information could be a factor in helping doctors choose the best therapy for a patient.

ASCO 2012 - Blog Post # 2

ASCO deals with all cancers, not just blood cancers, and many sessions are taking place at once. However Sunday, June 3, was "Myeloma Day." That session ran from 8:00 am to 11:00 am and included 12 talks. Some were rather researchy (new word) but several were of immediate interest.

Carfilzomib/Revlimid/dexamethasone (dex):

At the ASH conference in December, Dr Andrzej J. Jakubowiak had showed that the combination of carfilzomib, Revlimid, and dexamethasone was extremely effective for newly-diagnosed patients. Today Dr Jakubowiak showed that extended treatment produces even better responses, with over 64% achieving a "stringent" complete response, where no myeloma cells can be identified by the best measurement techniques. Further, responses appear to be very durable over time.

Bendamustine/Velcade/dex:

Dr Philippe Rodon of France described a study demonstrating that bendamustine, an alkylating agent, can help some heavily-pretreated patients when added to a Velcade/dex regimen. This may be true even when the patient's disease no longer responds to Velcade/dex.

Panobinostat/Velcade/dex:

Dr Melissa Alsina described a Phase II study showing that panobinostat, added to a Velcade/dex regimen, can rescue some patients whose myeloma has proven resistant to most treatments, including Velcade/dex. The overall response rate was 31%.

Carfilzomib versus Velcade:

Both of these drugs are proteasome inhibitors - they target a particular part of the cell, especially plasma cells. The two drugs have not been compared in a head-to-head study, but Dr Robert Orlowski did his best to compare them anyway, using data from comparable studies. A study of carfilzomib/melphalan/prednisone, and another of Velcade/melphalan/prednisone showed almost equal efficacy, though Velcade caused more neuropathy. Carfilzomib is looking good, but all studies of Velcade have used intravenous Velcade. Modern comparisons should use sub-Q Velcade, and once-weekly at most.

Cyclophosphamide/carfilzomib/thalidomide/dex:

Ouch. Dr Joseph Mikhael presented the results of this 4-drug study, with newly-diagnosed patients. It achieved a high response rate, 83% "very good partial response," but at the cost of many Grade 3 toxicities. Grade 3 is severe enough to significantly interfere with a patient's health or comfort, and generally requires a dosage reduction. Dr Orlowski suggested dropping the thalidomide and trying just the other three.

Bisphosphonate Therapy:

Dr Gareth J Morgan described studies showing that Zometa, compared with Aredia, results in a significant improvement in overall survival (!). Zometa causes more osteonecrosis of the jaw (ONJ), however, almost 4% reporting it, compared with 1% for Aredia. Most of the ONJ occurs in the first 36 months of treatment. ONJ appeared to be less in patients being treated with thalidomide. Some of the ONJ events seemed to be related to dental procedures.

Pomalidomide/dex:

Dr Ravi Vij described a study comparing showing that pomalidomide can be effective in a population of heavily-pretreated patients whose myeloma is resistant to both Velcade and Revlimid. In one arm of the study, patients got pom/dex, while the other arm received pom alone. Response rate was 30% for the dex arm, and 9% for the pom-only arm. The difference in time of survival was not as dramatic. Bottom line - take your pom with dex. Sorry about that.

MLN9708:

This is an exciting new proteasome inhibitor, like Velcade and carfilzomib, but can be taken at home as a pill. Dr Sagar Lonial described a Phase I study with heavily-pretreated patients. A Phase I study is designed to find the maximum tolerable dose of a drug, and determine other safety factors, rather than to determine the drug's treatment efficacy. However, many of these patients did achieve good responses or stable disease. There was very little peripheral neuropathy.

ASCO 2012 - Blog Post # 1

Dr. S. Vincent Rajkumar, of Mayo Clinic in Rochester, MN, outlined what seems to be Mayo Clinic's current standard of care for newly-diagnosed patients. Title: Upfront Therapy for Myeloma - Tailoring Therapy Across the Disease Spectrum. This is a very significant talk. With it, he presented a flow chart for determining the best initial treatment for a newly-diagnosed patient.

He suggests first stratifying a patient's disease according to risk as determined by cytogenetic testing (wacky chromosomes) or by unusual espressions of disease:

• The highest-risk patients typically live only two to three years after diagnosis, and not much has been done to improve that. His description of treatments for these patients is beyond the scope of this blog post.
• Medium-risk patients are those with a specific genetic translocation (t4;14), which he says can be converted to standard-risk by the use of Velcade. Not some other novel drug, but Velcade.
• Standard-risk patients have a wide array of available treatments before them, and the real question for the doctor is, which should s/he recommend.

He then suggests classifying the standard risk patient once more, according to eligibility for transplant, determined not so much by age as by health factors such as diabetes, kidney disease, heart disease, and other "comorbidities." For those eligible for transplant:

• Use Revlimid/dexamethasone (Rd) or Velcade/cyclophosphamide/dex (VCd) as an induction regimen for four cycles. To reduce the risk of treatment- limiting neuropathy, Velcade should be given once weekly, not twice weekly, or given subcutaneously.
• If the patient achieves a good response after four cycles, then stem cells can be harvested and stored.
• After stem cell harvest the patient may be offered the choice of an immediate autologous stem cell transplant (ASCT) or continued treatment with the induction regimen.
• A transplant is an aggressive treatment approach by any measure, aiming for a complete response but carrying significant risks, while the continuing induction regimen can be thought of as the beginning of a "sequential disease control approach that emphasizes quality of life as well as survival." In this second approach, another regimen will be tried when the original one fails. At present there are no data showing clear superiority of one approach over the other.

Transplant ineligible patients are usually elderly and have medical complications. Some points:

• Rev/dex (Rd) is commonly used in the USA. The optimum duration is not clear, but dexamethasone is usually lowered to a minimal amount or discontinued after a year.
• Thalidomide/dex is inferior to melphalan/prednisone and should not be used for these patients.
• Melphalan/prednisone/Revlimid (MPR) is not more effective than MP without Revlimid, he says. However, melphalan/prednisone/thalidomide (MPT) is superior to MP alone. An improvement is also likely if Velcade is added to the MP combination, although neuropathy is a risk. Cyclophosphamide can be substituted for the melphalan to reduce side effects.
• Having said all of that, he believes that Rev/dex (Rd) or Velcade/cyclophosphamide/dex (VCD) may be the best choices for this group, just as they are for the transplant-eligible patients. VCD is preferred for patients with kidney issues.

Final thought: The two endpoints that matter to the patient are length of survival and quality of life.


McCormick Place in Chicago is the largest convention center in the USA, and the ASCO convention brings to it over 30,000 clinical oncologists from all over the world.

Mark Fearing Died Today

Myeloma claims another one.  Mark and his wife Carol have been regulars at myeloma support group meetings in Minnesota.  Recently he ran out of treatment options, and entered hospice.  You can pass your condolences to Carol on Mark's Caring Bridge site.

We will miss him.

They Know Me on Sight

I walked toward the hematology desk at Mayo Clinic and was greeted by name before I got there. No one wants to be that familiar at that desk, though of course it's a compliment to the sweet technician who remembered me. Imagine how many people she sees in a day, not to mention a month. Good news again today, though, at the end of the 55th 28-day cycle on the pomalidomide study, my numbers are stable once more.  I'm going to write a country-western song about pomalidomide .. my secret love, takin' me to bed every night, keepin' me alive ...

Cancer markers:

IgG is down about 6%, from 1210 to 1140 mg/dL, but it goes up and down a bit, and the difference may be within the measurement accuracy of the test. M-spike is unchanged at 1.1 g/dL. Lambda and kappa light chains both dropped slightly, though the ratio is about the same and I don't really know what the light chains mean anyway.

For the second straight month every other blood marker of any significance was within the reference range, even the red blood cell count. I feel very good, too, and I'm running well, considering recent surgery. I had been concerned about calcium, but it's been well within the reference range for three months now, so I'm sure I have no dissolving bones.

ASCO:

The annual meeting of the Americal Society of Clinical Oncology (ASCO) will be held in Chicago this coming weekend, and my sweeties and I have been invited to attend. We will be helping to staff an advocacy booth supported by the International Myeloma Foundation, and blogging about new myeloma research. We might even go for a nice run on the Chicago Lakeshore Trail.

Advocacy Issues:

• Early Access to Emerging Treatments: Current rules often prevent doctors and their patients from trying new treatments, even if the patient is dying. We as a nation want to prevent patients from suffering unexpected side effects, of course, but for dying patients the side effect of NO treatment is worse.
• Oral Drug Parity: Some expensive, targeted cancer treatments are administered as infusions in a clinic, while others are pills, taken at home. Because prescription drug coverage almost always has a much higher co-pay and deductible than the medical insurance that covers in-clinic infusions, patients whose best treatment option is a pill can be faced with bills as high as $10,000 per month. Some states have passed legislation requiring insurers to cover oral treatments on terms no less favorable than in-clinic treatments, and federal legislation is proposed.  It can't come soon enough.

More to come ...

Most-Recent Test Results:

Test		Mar 08		Apr 04		May 04		May 29		Remarks
M-spike g/dL		1.0		1.1		1.1		1.1		\ Tumor marker
IgG mg/dL		1100		1290		1210		1140		/ Tumor marker
Lambda mg/dL		2.80		2.24		2.75		2.53		L Free light chains
Calcium mg/dL		10.3		9.6		10.0		9.7		OK
Creatinine mg/dL		1.0		1.2		1.0		1.2		Kidney, OK
HGB g/dL		14.2		14.6		15.6		15.7		Hemoglobin, OK
RBC M/uL		3.86		4.08		4.31		4.37		Red cells, not bad
WBC K/uL		3.7		6.1		5.3		4.6		White cells, OK
ANC K/uL		1.70		1.50		2.70		1.80		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.

Everything here is organic except the oatmeal in the meat loaf (we don't know where to get oatmeal that is both organic and gluten free). Yes that's a dill pickle in a sweet potato:

Revlimid and Second Primary Cancers

Newly-diagnosed patients:

Last Monday, May 7, 2012, the FDA issued a Drug Safety Communication which says, in part, "in clinical trials of patients newly diagnosed with multiple myeloma, those patients treated with Revlimid had an increased risk of developing new cancers." These are also called "second primary cancers."

If you are considering Revlimid as initial treatment or as a maintenance treatment, you may wish to read on before you lean very heavily on that FDA statement:

• The FDA statement contains no new information. The facts on which the statement is based are from three well-known studies on newly-diagnosed patients, and are over a year old. If your doctor doesn't already know of these studies, it's time to get a new doctor.
  
  
• Since one year ago, new information about those studies has been made available, and it is not clear to me that the FDA used that information.
  
  
• The three studies are all different, with somewhat different objectives, and none was specifically designed to reveal the frequency of second primary cancers. They were meant to show the difference in progression-free survival and overall survival, comparing Revlimid maintenance with a placebo, after transplant or other initial treatment.  The Myeloma Beacon has a good description of the three studies.
  
  
• Analysis by FDA and others may be wrong, and this may be one reason:
  • All three studies demonstrated that Revlimid maintenance does extend the time to relapse.
  • In some cases the patients on maintenance had twice as much time, or even more, before relapse.
  • Therefore, patients on Revlimid maintenance had much more time to develop second cancers before relapse than did patients on the placebo.
  • It appears that some of the studies, if not all three, stopped looking for second primary cancers once a patient had relapsed.
  • Thus, we would expect patients in the Revlimid arm to collect more second primary cancers, just because they had more time to do so.
  
  
• Even if Revlimid treatment did result in more second primary cancers, that risk may be lower than the risks from not taking it.

Patients with relapsed/refractory myeloma:

The FDA also reviewed results from two clinical trials which supported the initial FDA approval of Revlimid. I find their description of the data to be confusing at best, but in the worst interpretation of it, patients on Revlimid with high-dose dexamethasone experienced fewer than four second primary cancers per 100 patients per year.

Bottom line:

I'm not a doctor, but I have opinions anyway, and in my opinion, the FDA Safety Communication should not be an occasion to change any decisions about using Revlimid, which is still one of the best treatment options available. Other very smart doctors are trying to make sense of this issue as we speak, and we should wait until better information is available.

I admit to a little bias on this issue, because: (1) I take pomalidomide continuously. It is a close relative to Revlimid, and I don't want to think about second primary cancers from that; and (2) I like Celgene, the makers of both drugs. However, I really don't think that we have enough information yet to even say for sure that Revlimid poses a greater risk of second primary cancers than no treatment at all.

Please comment, especially if you have any corrections or suggestions about facts or reasoning in this blog post. Please let me know. Thanks.

We Lost Another One

Mike Olson, from Menominee WI, participated regularly in the Stillwater, MN support group meetings, and was instrumental in starting a support group in Eau Claire, WI.  Mike's myeloma was aggressive, however, eventually overwhelming every treatment Mike's doctors could offer.  After a couragous and exhausting battle, Mike died at home Thursday, May 10, 2012.  We will miss him.

Here is the obituary.

Cycle 54, Still Stable

At the end of the 54th 28-day cycle on the pomalidomide study, I'm happy with the results once again. It's good stuff.

Cancer markers:

IgG is down slightly, from 1290 to 1210 mg/dL, but the difference may be within the measurement accuracy of the test. M-spike is unchanged at 1.1 g/dL. Lambda and kappa light chains did their usual dance, this time lambda chains are up slightly, but I doubt it means anything.

Every other blood marker of any significance was within the reference range, even the red blood cell count. I feel very good, too.

Anniversary:

Sunshine and I have recently begun the 50th year of our marriage. We're having a lot of fun running marathons in each of the 50 states, but 49 years of marriage is far more significant and satisfying.

Most-Recent Test Results:

Test		Feb 07		Mar 08		Apr 04		May 04		Remarks
M-spike g/dL		1.1		1.0		1.1		1.1		\ Tumor marker
IgG mg/dL		1280		1100		1290		1210		/ Tumor marker
Lambda mg/dL		1.99		2.80		2.24		2.75		L Free light chains
Calcium mg/dL		10.2		10.3		9.6		10.0		Normal
Creatinine mg/dL		1.0		1.0		1.2		1.0		Kidney, OK
HGB g/dL		15.2		14.2		14.6		15.6		Hemoglobin, OK
RBC M/uL		4.18		3.86		4.08		4.31		Red cells, not bad
WBC K/uL		4.5		3.7		6.1		5.3		White cells, normal
ANC K/uL		2.40		1.70		1.50		2.70		Neutrophils, normal

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.

Normal Breakfast:

I Had Fun Today

I had a chance today to address employees of Celgene, makers of pomalidomide, the investigational drug that has kept my myeloma stable for more than four years now.  I'm grateful for the drug, and told them so.  They seemed pleased, and I had a lot of fun.

Celgene recently announced that they have submitted pomalidomide to the FDA for approval, see previous post.  I will be delighted when the drug is accessible to even more people.

Pomalidomide Submitted for FDA Approval

I'm so delighted.  Pomalidomide, by Celgene, is the new, innovative anti-cancer drug which has kept my myeloma stable for four years now, in a drug trial.  That trial and other trials have demonstrated that pomalidomide is a powerful combatant in the fight against myeloma.  When pomalidomide is available to everyone it will benefit many, many patients.  For some, it will save their lives.

If all goes very well, the FDA could approve pomalidomide as soon as this fall.

Here is a great article on Celgene's April 26 announcement, by the International Myeloma Foundation.

The other very promising drug on the immediate horizon is carfilzomib, by Onyx, submitted for FDA approval last September and well on its way to approval.  It uses a different mechanism than pomalidomide for fighting myeloma, and there is even a trial underway to determine how well they might work together.

Things are happening.  Never stop hoping.

Another Good Result at Mayo

At the end of the 53rd 28-day cycle on the pomalidomide study, I'm happy with the results once again.

Cancer markers: IgG is up slightly, from 1100 to 1290 mg/dL, but that's where it was in November and February, so it's not scary, and part of the increase may be good IgG responding to the surgery. M-spike came up a bit too, 1.0 to 1.1 g/dL, but that increase was less than the increase in IgG. That's fine. Lambda and kappa light chains did their usual bounce too, this time down, nicely into the reference range.

Neutrophils: These cells are the first responders of the immune system, always on the alert, and they are up 250% from last month. Since there is no evidence of any infection, Dr LH believes that this increase is my body's normal response to the hernia surgery 16 days ago. See Too Late to Back Out Now. Actually, I'm tickled to see that my supposedly-compromised immune system is able to respond that well to a perceived threat.

Calcium: Last month calcium was 10.3 mg/dL, slightly over the top of the range, but today it was 9.6, comfortably below. Dr L said that hydration makes a big difference, and I did make an effort to hydrate properly this time. Now I'm a believer. One happy interpretation of the reduction is that last month's high reading most likely did not come from bone lesions, because those don't stop sending calcium into the blood.

Rash from Bactrim: I mentioned to Dr LH that Bactrim (sulfamethoxazole) caused a rash on my leg. She asked if I had confirmed that by going off until the rash went away, then going back on again. I have not confirmed it, though the time-correlation was too stark for me to doubt. I may get a chance to confirm it sometime in the future, but I'm not going to take Bactrim as a prophylaxis, only if I know of an infection that it might fix.

Most-Recent Test Results:

Test		Jan 12		Feb 07		Mar 08		Apr 04		Remarks
M-spike g/dL		1.2		1.1		1.0		1.1		\ Tumor marker
IgG mg/dL		1190		1280		1100		1290		/ Tumor marker
Lambda mg/dL		2.24		1.99		2.80		2.24		L Free light chains
Calcium mg/dL		10.0		10.2		10.3		9.6		High
Creatinine mg/dL		1.0		1.0		1.0		1.2		Kidney, OK
HGB g/dL		15.1		15.2		14.2		14.6		Hemoglobin, OK
RBC M/uL		4.36		4.18		3.86		4.08		Red cells, low
WBC K/uL		4.8		4.5		3.7		6.1		White cells, normal
ANC K/uL		2.40		1.70		1.50		3.80		Neutrophils, way up

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.

Crocuses seem to shout, don't they!