Record Snow at Mayo Clinic

Thursday, May 2, 2013:

We Minnesotans thought we were done with snow for the season. Highway departments had even removed the plows from their big trucks, converting them for summer use. After all, Rochester, Minnesota's previous all-time record snowfall for the entire month of May was two inches. Last night and today, though, Rochester and Mayo Clinic got a foot. We saw the forecasts and drove from our home to Rochester yesterday afternoon before the storm, staying at a hotel. Today we did our medical business entirely indoors, using the clinic's warm, dry honeycomb of tunnels, returning home this afternoon when the storm was over. No problems - the roads were pretty good once we got away from Rochester.

We did have to get the car
out of the snow

Cycles 66 and 67:

I never got around to posting last month's results on the Pomalyst study, so today's report is a double. Cycles 66 and 67 are complete, each 28 days long, for a total of five years and almost two months. I take 2 mg of Pomalyst every night, the good stuff that is keeping my myeloma at bay. In addition I take one 325-mg aspirin every day to ward off blood clots, and a 400-mg tablet of acyclovir to keep shingles away. Today's results are good - IgG is down about 14% from last month, M-spike is unchanged, and no other blood results are a cause for alarm. Ho-hum. I love ho-hum.

Support Groups are Good (I learned how to take Pomalyst):

When I started on Pomalyst five years ago I was under the impression that it could be taken with or without food, or at least that's what I have thought in recent years. If I was told otherwise, I have forgotten it. When Pomalyst was approved by the FDA, though, I noticed that the Pomalyst patient guide advised a two-hour interval between Pomalyst and any food. I asked Dr Martha Lacy about that at a Twin Cities support group meeting almost three weeks ago. She replied that the two-hour interval might be important, to keep the drug from binding to the food, and that it might be especially important to avoid calcium in those two hours.

Because of this discussion, my evening habits have changed. I previously took a 300-mg calcium tablet every evening, sometimes at bedtime, and ate an ounce or so of cheese near bedtime, often at the same time that I took the Pomalyst. Since that meeting, though, I have made sure to avoid all food, including calcium and other supplements, within two hours of taking the Pomalyst. Is that why IgG went down this month? If so, maybe it will stay down, now that I have removed a variable from the drug administration.

High Blood Pressure:

My brain stopped when I heard the first number, 155, so I didn't hear the second number today. I don't recall ever having a systolic reading as high as 155 mmHg. A normal systolic value for me would be in the low 130's, and diastolic in the 70's. Dr L suggested that I keep a log of BP this month, so I ordered a new meter to arrive Saturday, and will do just that.

This was an unusual morning because we ate out the night before (salt, fat, sugar) and slept in a hotel overnight, somewhat uneasily. Furthermore, breakfast was unusually heavy on coffee and especially chocolate (caffeine). I'm not overly concerned, but a log will help a lot in determining whether anything needs to be done. A very good doctor recently suggested meditation, and I have considered starting that anyway, so maybe I will have another reason. But where do people get the time? Morning, I suppose, on rising. Dr Oz suggests seven minutes of exercise first thing in the morning too, to rev up the metabolism. I should do that, but which is first, the exercise or the meditation? I get stressed out just thinking about it all.

Light Chains and the Prostate:

My myeloma is IgG Lambda, meaning that the naughty tumor cells produce Lambda light chains, rather than Kappa. In recent months, though, both numbers seem to be creeping up. Lambda light chains were at their highest in five years last month, and now Kappa light chains are at their highest this month. Both are at or above their reference range. Dr L suggested that this may happen to us men as we age, especially if we have prostate issues (I have BPH), because back-pressure in the bladder may impair the kidneys' ability to remove the chains. At least I think that's what she said. If so, then it's not about myeloma, it's about the prostate. Hmmm, I haven't had that checked in years.


Most-Recent Test Results:

Test		Feb 07		Mar 07		Apr 04		May 02		Remarks
M-spike g/dL		1.0		1.1		1.1		1.1		\ Tumor marker
IgG mg/dL		1140		1290		1230		1060		/ Tumor marker
Lambda mg/dL		3.09		2.84		3.30		2.89		L free light chains
Calcium mg/dL		9.6		9.4		10.0		9.4		OK
Creatinine mg/dL		1.5		1.2		1.5		1.2		Kidney, OK
HGB g/dL		14.9		14.4		15.5		14.9		Hemoglobin, OK
RBC M/uL		4.10		4.26		4.53		4.40		Red cells, low
WBC K/uL		4.2		4.7		5.2		4.5		White cells, OK
ANC K/uL		1.60		2.50		2.20		1.50		Neutrophils, low

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.

Five Years on Pomalyst (Pomalidomide)

"Pomalyst" is a little easier to say and write than "pomalidomide," so I prefer it. Today was the end of the 65th 28-day cycle of the trial, and my myeloma is still stable. IgG and M-spike are up somewhat, but within the range of recent results and I believe this is a normal fluctuation. Further, and very important, a five-year-anniversary PET scan shows no lesions, not in the bones or anywhere else. In my book, as long as kidney function, blood counts, and calcium are normal, the PET scan is the best measure of the immediate level of actual injury from my myeloma.

View from our front door two days ago

IgG is actually up from 1140 to 1290 mg/dL, and M-spike from 1.0 to 1.1. However, lambda light chains have declined slightly from 3.09 to 2.84 mg/dL, and if that means anything at all, it is movement in the good direction. I pronounce the myeloma stable after five years. Hoist a pint for Don and Pomalyst.

Other Results:

Creatinine was back within the normal range today at 1.2 mg/dL, giving credence to my non-medical theory that the reading of 1.5 last month was not real, but due to muscle breakdown from a very unusual amount of physical work preceding the test (run 18 miles, shovel snow for 3 hours). Dr LH seemed a little skeptical at first, but seemed to agree that the theory is a possibility.

Most-Recent Test Results:

Test		Dec 13		Jan 10		Feb 07		Mar 07		Remarks
M-spike g/dL		1.1		1.1		1.0		1.1		\ Tumor marker up
IgG mg/dL		1250		1140		1140		1290		/ Tumor marker up
Lambda mg/dL		3.25		2.56		3.09		2.84		L free light chains
Calcium mg/dL		9.3		9.6		9.6		9.4		OK
Creatinine mg/dL		1.3		1.2		1.5		1.2		Kidney, OK
HGB g/dL		15.1		15.3		14.9		14.4		Hemoglobin, OK
RBC M/uL		4.31		4.41		4.10		4.26		Red cells, low
WBC K/uL		4.4		4.1		4.2		4.7		White cells, OK
ANC K/uL		2.10		1.50		1.60		2.50		Neutrophils, dandy

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.

Pomalyst (Pomalidomide) Approved by FDA

Five years ago two different therapies had failed to stop my myeloma's upward climb, and finally a PET scan showed holes in my bones. This was Stage I disease, and time for a treatment that would actually work for me! I went on a trial of CC-4047 (later pomalidomide, now Pomalyst) with dexamethasone, then eventually Pomalyst alone. It brought my numbers down quickly, and now my myeloma remains stable, with an M-spike of about 1.1 mg/dL. More-recent PET scans and X-rays have not found holes in my bones.

My family and I have enjoyed five free years, with a high quality of life. During that time I have been privileged to run 43 marathons in 34 different states which, added to previous marathons, comes to 70 marathons in 50 different states. Just last December, when I was 71, we finished that 50-state odyssey in Hawaii.

For those five years I have taken a little red Pomalyst pill every night, and have escaped the disabling injuries that myeloma can cause, but without the severe side effects and frequent clinic visits of regular chemotherapy. In fact, side effects have been minimal. It has been a miracle for me - I've literally been free to travel and free to run. I do take very good care of myself, with the best food we can find and plenty of exercise and sleep, but those few milligrams of Pomalyst most certainly have been the key. Now that Pomalyst is approved by the FDA, it has the potential to do for thousands more patients and families what it has done for us.

Pomalyst is evidence that research, innovation, and new technology are making a big difference to those of us with myeloma. Add the recent approval of Kyprolis and Velcade sub-cutaneous, plus more drugs in active studies and on the way to studies, and we have reason for a lot of hope. Dr. Durie of the International Myeloma Foundation (IMF) counted 700 different abstracts related to myeloma research at the recent conference of the American Society of Hematology (ASH). Myeloma is certainly not yet a chronic disease for most of us, but we are heading that way.

Here is today's FDA announcement, titled FDA approves Pomalyst for advanced multiple myeloma.

Live one day at a time and make it a masterpiece! - Dalai Lama

Neutrophils Are Higher in the Afternoon

Maybe not for everyone, but they sure are for me. My doctors and I have known that for several years now, and for the Pomalyst (CC-4047, pomalidomide) study I have gone to a local clinic in the afternoon of the day before my appointment at Mayo Clinic. Doing it that way, my neutrophils have always been above the 1000/uL lower limit enforced by the study. Below that limit a patient might be in danger of neutropenic fever or other problems, so the treatment regimen must be discontinued until the neutrophils reassert themselves. It's not cheating to measure the neutrophils when they show highest, I'm told, because they are really there all of the time. I guess they're late sleepers.

Today, though, Mayo Clinic inadvertently scheduled a CBC with differential for this morning, with a result of 910/uL, which is below the limit. According to the study protocol, that means I would have to go off the Pomalyst because, unfortunately, only the most-recent CBC can be used. Therefore yesterday afternoon's CBC, with its good result of 2000/uL, didn't count any more. That's a little dopey, but rules are rules.

This problem was easily solved, however. This same afternoon, yet another blood draw at the local clinic resulted in a satisfactory neutrophil count of 1600/uL, so my partcipation in the study is back on schedule. I had a capsule for tonight anyway, the last night of the current cycle, so we're all set for 29 more days.

Pomalyst Trial:

Today completes my 64nd 28-day cycle of the study of Pomalyst and my myeloma is still stable, as it has been for almost five years. IgG is exactly the same as last month, at 1140 mg/dL, while M-Spike dropped from 1.1 to 1.0 g/dL, though that drop may not be significant. Lambda light chains are up a bit but Kappa chains are up too, and the ratio didn't change much. Stable. Hoist a pint for Don.

We met with Mayo's doctor TR today, another delightful person. I asked her what to believe - if IgG stays constant and M-spike drops by about 10%, which is correct? She pondered that a bit and said "both." Now that I have had time to reflect, I guess it's possible that "bad" IgG really did drop, as shown by M-spike, and "good" IgG went up an equal amount. However, I suppose it's more likely that the difference is just due to measurement tolerances. Either way, "both" is the right answer.

Other Results:

Creatinine clearance is a rough measure of kidney function - higher creatinine means less kidney function. Today's creatinine measurement was 1.5 mg/dL, the highest I have seen in more than nine years. However, creatinine itself is a product of muscle breakdown, and if muscles have been heavily challenged then creatinine will be inherently higher.

I believe that today's result was an anomaly, for two reasons:

• (1) Two days ago I ran 18 miles at a pace faster than my marathon pace, and then shoveled snow for nearly three more hours. I was very tired and every muscle ached. Furthermore, just yesterday, I shoveled for another two hours, with more ache; and
• (2) I probably didn't drink enough water either day, especially after the 18-mile run, and kidneys need plenty of water to function correctly.

I predict that the creatinine measurement will be back within the reference range at the end of the next cycle.

Most-Recent Test Results:

Test		Nov 15		Dec 13		Jan 10		Feb 07		Remarks
M-spike g/dL		1.2		1.1		1.1		1.0		\ Tumor marker down
IgG mg/dL		1270		1250		1140		1140		/ Tumor marker same
Lambda mg/dL		2.92		3.25		2.56		3.09		L free light chains
Calcium mg/dL		9.6		9.3		9.6		9.6		OK
Creatinine mg/dL		1.2		1.3		1.2		1.5		Kidney, high
HGB g/dL		14.7		15.1		15.3		14.4		Hemoglobin, OK
RBC M/uL		4.13		4.31		4.41		4.10		Red cells low
WBC K/uL		5.5		4.4		4.1		4.9		White cells, OK
ANC K/uL		3.00		2.10		1.50		1.60		Neutrophils, Low

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.

Alive for Another Month

Thursday, January 10, 2013:

Well, that title is a bit over-dramatic. But it is how I feel, every month when the results come in and the cancer is still stable. The study drug pomalidomide will doubtless stop working for me someday, but this month is in the bank. When (if) the drug fails there will be other drugs and some more months, but nothing can take away these wonderful, joyous months and years that it has given me.

Pomalidomide Trial:

Chicken, squash, broccoli, white and
sweet spuds, mustard, all organic

Today was the end of Cycle 63 of my participation in the study of pomalidomide. That drug has kept my myeloma stable and my quality of life high for almost five years now, and has been submitted to the FDA for approval. I certainly hope it is approved soon, so many more people can enjoy its benefits.

My cancer numbers were a little better this time. In fact, all but one blood test either improved or stayed the same. IgG dropped from 1250 to 1130 mg/dL, M-spike is unchanged at 1.1 g/dL, light chains are down and the ratio is up (all good). Also improved are the other blood numbers that were weird last month. Liver function tests ALT, AST, and LDH, which were all somewhat high after a hot marathon and overnight flight, are all back to normal. Kidney function test creatinine is also down slightly, which is the right direction.

 The only test that went the wrong way was my neutrophil count, which dropped and apparently took the total white blood count down with it. Happily, though, it was still 1.5 K/ul, well above the 1.0 minimum required in the study.

CNN Stories:

CNN did another story on my family and me, now that I have finished my 50-state marathon adventure. If you are interested, here are links to the two CNN Stories:

• 2013 Jan 09: Recent Story
• 2011 Nov 29: Original Story

Most-Recent Test Results:

Test		Oct 17		Nov 15		Dec 13		Jan 10		Remarks
M-spike g/dL		1.0		1.2		1.1		1.1		\ Tumor marker same
IgG mg/dL		1180		1270		1250		1140		/ Tumor marker down
Lambda mg/dL		2.38		2.92		3.25		2.56		L free light chains
Calcium mg/dL		10.0		9.6		9.3		9.6		OK
Creatinine mg/dL		1.3		1.2		1.3		1.2		Kidney, OK
HGB g/dL		15.7		14.7		15.1		15.3		Hemoglobin, fine
RBC M/uL		4.35		4.13		4.31		4.41		Red cells bottom edge
WBC K/uL		4.4		5.5		4.4		4.1		White cells, low
ANC K/uL		1.90		3.00		2.10		1.50		Neutrophils, Low

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.

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.