Wednesday, December 11, 2013

ASH 2013 - Chronic Infection, MGUS, & Myeloma

Paper 3116: Chronic Infection, a Neglected Cause Of Development Of Monoclonal Gammopathy Of Undetermined Significance (MGUS) and Myeloma

According to this French paper, it is well known that certain chronic infections can cause lymphomas and chronic leukemia, because the infection annoys the cells until they ultimately make a mistake and become malignant (my words - theirs are undoubtedly more clinically correct but well above my pay grade).  Apparently, something similar can happen to our plasma cells, turning them into malignant myeloma cells.

Indeed, the International Myeloma Foundation says "Several studies have linked myeloma to HIV, hepatitis, herpes virus infections (especially herpes virus 8), Epstein Barr Virus (EBV), as well as new 'stealth adapted' viruses such as mutated cytomegalovirus (CMV)."  The studies show that people with those infections are somewhat more likely than average to develop MGUS or myeloma.

Realistically, though, what is the risk for any one person?  The French researchers examined the question another way.  Since specific plasma cells are engineered (by our bodies) to attack specific threats, they tested the malignant cells, by examining the monoclonal immunoglobulins (M-spikes) that they produce, to see what threat they were designed to fight.  They tested the M-spike of 101 patients for reaction against eight different viruses and bacteria, and found that 23% of the patients' cells were specific for HCV (hepatitis C), EBV, or H. Pylori, a bacterium implicated in chronic stomach ulcers.  Any of the three infections can be present without symptoms.  For these 101 patients, no reaction was detected against the other five threats which, by the way, included CMV.

The authors propose: "Efforts should be made to identify the subsets of patients with (M-spikes) specific for HCV, EBV and H. Pylori, preferably at the MGUS stage, as anti-infection treatment is expected to cure MGUS and prevent progression toward myeloma."

A possible cure for MGUS and prevention of myeloma for some patients - wishful thinking?  I'm not a doctor, but I believe that H. Pylori can usually be cured with appropriate antibiotics.  I doubt that a cure is available for either HCV or EBV, but perhaps there are treatments which could reduce their impact on the immune system.

Should doctors be testing to identify patients with M-spikes specific to those infections?  Is it possible that, for some people with symptomatic myeloma, these infections could even cause further mutations of already-malignant myeloma cells, thereby assisting that myeloma in its deadly quest to eventually defeat every treatment?  Can anyone add more information?

Tuesday, December 10, 2013

ASH 2013 - Maintenance Matters

Paper 2: Initial Phase 3 Results Of The First (Frontline Investigation Of Lenalidomide + Dexamethasone Versus Standard Thalidomide) Trial (MM-020/IFM 07 01) In Newly Diagnosed Multiple Myeloma (NDMM) Patients (Pts) Ineligible For Stem Cell Transplantation (SCT)

The title suggests a comparison of Revlimid with low-dose dexamethasone, called Rd, and an old therapy consisting of melphalan, prednisone, and thalidomide, called MPT.  That comparison is significant in many parts of the world, where MPT is a standard of care for older patients, but MPT is rarely used now in the USA because doctors have newer drugs such as Revlimid, Velcade, Kyprolis and Pomalyst available, and know that those will perform better, even (especially?) in an older population.  This study confirms again that they are correct - Rd thoroughly trounces MPT.

For those of us seniors with access to Revlimid, though, this study clearly demonstrates the advantage of Revlimid maintenance after initial therapy.  It studied 1,623 newly-diagnosed myeloma patients over age 65 or ineligible for transplant, in three study arms: (A) Rd until disease progression; (B) Rd for 72 weeks or progression; and (C) MPT for 72 weeks or progression.

Some results for patients on continuous Rd versus those on 72-week Rd:
  • Median progression-free survival: 26 months versus 21 months.
  • Four-year overall survival: 59% versus 51%.
As time goes on, I would expect the difference in survival to grow.  If this were me, I sure would want to stay on the Revlimid continuously, rather than leave it after a year and a half.

Oh wait, it IS me!  I'm on a study of Pomalyst, in the same family of drugs as Revlimid, and it has kept my cancer under control for five and a half years now.  My study initially included low-dose Dex, just like this study, but my Dex was gradually reduced to zero over about 80 weeks.  For all practical purposes I have been on maintenance, using Pomalyst as a single agent, for at least four years.  During my study I have been able to run 50 marathons, so maintenance has offered a good quality of life.

Monday, December 9, 2013

ASH 2013 - Skip the Transplant

ASH is the American Society of Hematology, which has its annual meeting in early December each year, called the ASH Conference, or just ASH.  I will be blogging on several topics, but this one, though it is "just" a poster talk and not an oral presentation, seems extremely important because it suggests a change in the standard of care for newly-diagnosed patients.

Paper 3180: Lenalidomide and Dexamethasone Alone Is Equivalent To Lenalidomide and Dexamethasone With Autologous Stem Cell Transplant In Newly Diagnosed Multiple Myeloma: Interim Study Results Of a Randomized Trial.

The authors are from Columbia University and two other major universities.  Their small study has two arms: (1) Revlimid/dexamethasone (Rev/Dex), followed by autologous stem cell transplant (ASCT), then followed by Revlimid maintenance; and (2) The same Rev/Dex treatment and Rev maintenance, but without the transplant.  Here are some of the results:
  • More patients on the ASCT arm responded to treatment, 96% versus 77%.  No surprise.  Those who did not respond went off study and are not included in the statistics reported below.
  • Patients on the ASCT arm had a median progression-free survival of 17.0 months, versus 25.2 months for the Rev/Dex-only arm.  That's right - I don't have it backward.
  • Similarly, patients in the ASCT arm have a median overall survival (OS) of 57.6 months, while the OS for the other arm has not been calculated yet because more than half are still alive.
Needless to say, this is a startling result, because the up-front ASCT preceded by Rev/Dex or some other induction is still thought by many doctors to be the standard of care.  The authors are careful to downplay the obvious conclusions, however, saying that the study is small (47 patients total) and the follow-up short.  They go so far as to say that the PFS and OS differences between the two arms are "not statistically significant," presumably because of the small study size.

I have other caveats:
  • Previous studies have shown that more-aggressive treatment can benefit high-risk patients, and I do not see any effort in this study to identify those patients for separate evaluation or to remove their results from the overall calculations.
  • This is a study of newly diagnosed patients, and the results may not be at all relevant to previously-treated patients, especially to patients looking toward a second transplant.
  • Some of the numbers do not make sense to me.  For example, the authors say that only four patients have died in the ASCT arm, out of 25, yet they have computed a median OS.  I am missing something and did not have a chance to speak to the presenters.
  • I invite comments!  Perhaps someone can explain.
  • Other studies have shown that other frontline treatments may be even more effective than Rev/Dex, such as Kyprolis/Rev/Dex, followed by Rev maintenance.
My suggestion to any newly-diagnosed patient whose doctor is recommending a transplant:  Ask your doctor if s/he has read this abstract, or better yet the full paper.  If not, wait until s/he has read it.  Then ask why the results do not apply in your case.

For that matter, I believe that a transplant recommendation always calls for a second opinion anyway.  No matter what anyone says, a transplant is rough medicine with lifelong implications.

Saturday, September 21, 2013

Still Stable

Thursday, September 19, 2013,    Pomalyst Study Cycle 72:

M-Spike was 1.0 g/dL this morning, where it probably should have been last month when it dropped to 0.9 for the first time in almost four years. IgG was almost unchanged, up less than 2%, from 1110 mg/dL to 1130, probably well within the measurement error for that test. In any case I trust the IgG result a little more than M-Spike, and I think the change from last month is negligible.

Lambda light chains are still above the reference range, barely, but Kappa light chains have dropped by almost half. I don't know what to think of that - it could be an ominous sign, I suppose, but I won't worry about it. Light chains have been acting strangely lately anyway. Maybe it's a testing anomaly, or maybe it's a result of changes in my supplements.


About five weeks ago I added magnesium taurate 250 mg per day and zinc picolinate 50 mg. The magnesium was added to help with my frequent and painful muscle cramps, and I have not had a single cramp since starting the magnesium. It made an incredible difference overnight, after years of waking up in agony from calf cramps. A friend had advised me to try "magnesium oil" years ago, but I was skeptical because he was selling it. I wish I had at least tried it, maybe it would have worked too.

The zinc is reputed to bolster the immune system, and I have no idea whether it helps that, but it does seem to help me with a guy thing, so I'll continue to take it.

Did one or the other of those supplements influence the Kappa light chains? Maybe, but I doubt it. Mayo knew that I had added these supplements though, so at this visit they checked serum levels of magnesium, bicarbonate, potassium, and TSH. All were normal.

Most-Recent Test Results:

Test    Jun 27    Jul 25    Aug 22    Sep 19     Remarks
M-spike g/dL 1.0 1.1 0.9 1.0 \ Tumor marker
IgG mg/dL 1300 1290 1110 1130 / Tumor marker
Lambda mg/dL 2.61 3.10 2.93 2.92 L free light chains High
Kappa mg/dL 1.95 1.67 2.00 1.07 K free light chains OK
Ratio 0.26-1.65 0.75 0.54 0.68 0.37 Kappa / Lambda
Calcium mg/dL 9.5 9.7 10.1 10.1 OK
Creatinine mg/dL 1.2 1.3 1.1 1.5 Kidney, OK
HGB g/dL 15.1 14.5 15.6 15.7 Hemoglobin, fine
RBC M/uL 4.38 4.23 4.44 4.41 Red cells, OK
WBC K/uL 5.1 4.9 4.2 4.3 White cells, OK
ANC K/uL 2.4 2.6 2.0 1.8 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.

Friday, September 13, 2013

Dental Implant Procedure

My Dental Implant

This post has nothing to do with myeloma, except that I am able do implants now because I am not (yet) taking any bisphosphonates. I'm writing it here because it was an interesting experience and I want to keep a permanent record of it.

My left lower jaw is running out of teeth. Number 17, the "wisdom tooth," has been gone for 50 years (possibly explaining the lack of wisdom). Number 18, a huge molar, is in place and working, the only remaining chewing surface. Numbers 19 and 20 have been gone for years, and number 21 has been slowly "resorbed" (dissolved from the inside - unusual) over the last five years or so. Today's job one was to remove what was left of number 21, leaving a three-tooth gap. Job two was to insert an implant in place of number 21, and another in the area between numbers 19 and 20.
After the work was done.
Left to right # 21, 20/19, 18
(with xray-opaque metal crown)

My surgeon was Dr. Macmenamen in Stillwater, MN. He told me that if this extraction was required because of infection, we would have to wait four months for the jawbone at tooth 21 to heal before placing the implant. However, because the tooth was not infected and the bone should be clean, he might be able to do an "immmediate" implant, depending on what he actually found when the tooth was removed. Because the bone in positions 19 and 20 was strong and healthy, the doc was certain that he could place that second implant immediately regardless.

We discussed nitrous oxide, "laughing gas," in the initial consult visit and again at the beginning of the second visit. The doctor recommended it as a means of reducing my anxiety during the procedure. I'm more afraid of anesthetics than pain, though, so eventually I declined the nitrous, which turned out to be fine. The only pain was two or three needle pricks (they call them "pinches" these days, don't they) as the novocaine was injected.

The doc first removed the weak tooth, number 21. Though it broke into pieces, he had no trouble getting them out, and was pleased that he had managed it without damaging the bone around the root, as this was important for anchoring the implant. He found no sign of infection, also important, and decided that he could proceed to the immediate implant. I had asked him to talk to me as he worked, so that I would know what was going on, and he did a pretty good job of that, and also responded to frequent questions. I love that.

For the implants, the doc started with a small-diameter "pilot hole" drill bit, then followed that with successively-larger drill bits, each drilling quite slowly and with lots of water irrigation. He explained that the bone is alive, and he wanted to avoid heating it (thus killing it) by taking too much bone at once or with too much speed. I suppose that he drilled with five different sizes or so. He said that the final size was 4.5 mm, roughly two tenths of an inch, and that the threaded titanium implant was slightly larger, for an interference fit. When the hole was prepared, he used his drill at an extremely low speed to screw in the implant until it bottomed out. Both implants seemed to bottom out quite positively, suggesting a nice snug connection between the threads of the implant and the bone.

With the implants in place, he screwed a "healing abutment" into the top of the implant. The gum will grow around that, and four months from now the bone will be firmly grown into the implant's threads and the healing abutment will be replaced with a different abutment designed to support a dental crown. Finally, he took three stitches in the gum with thread designed to dissolve in a few days.  He said that everything had gone very well.

Now it's evening, the novocaine has worn off, I don't taste blood any more, but it still hurts. I'm taking naproxen (Aleve), which does help a lot. Beer helps too, in modest quantity. I'm to take only foods that don't need to be chewed, for a day or two, then soft stuff, described as food that can be cut with a fork. I can't eat anything hard, like nuts, for at least a week.  I'll miss my chunky peanut butter.  I can run, but should be guided by the pain, i.e. don't run if it hurts.

I expect everything to go well, but if not I'll blog.

Monday, August 26, 2013

Best M-Spike in Four Years

Thursday, August 22, 2013,    

Pomalyst Study Cycle 71:

M-Spike was 0.9 g/dL this morning, compared with 1.1 last month. The last time that M-Spike was 0.9 or less was December, 2009, so we had a little celebration this morning. IgG was down as well, from 1290 mg/dL to 1100, although it has been at least that low three other times this year, so the combined results are definitely good news but probably not a breakthrough.

Lambda and Kappa light chains were both just above the tops of their respective reference ranges. That seems to be a new normal for me - they're both slightly high. The ratio was fine.


I have only a very little peripheral neuropathy, in the form of numbness and tingling of fingers and toes. No problem - most days I don't even think about it. However, I have regularly experienced painful muscle cramps, especially in the calves, most frequently at night or after a long run. Some people call this peripheral neuropathy but it's just muscle cramps, also known as charley horses.

Since I started taking magnesium about a month ago in the form of magnesium taurate, 125 mg of elemental magnesium twice daily, I have not had one cramp, neither at night nor after a run. I've had one or two close calls, where I had to jump out of bed and stretch the calf to prevent an oncoming cramp, but no actual full-blown cramps.

When I mentioned this to Dr TR, she confirmed that magnesium can be helpful in treating cramps. I got the impression, though, that she doesn't often recommend magnesium to her patients because it can also have a significant laxative effect. More often, I think she and others may actually suggest pickle juice. Yes, dill pickle juice, not the pickles themselves, and no one seems to know why it works. Since the taurate form of magnesium has less laxative effect than the oxide or the hydroxide form, and 250 mg per day is a small dosage, I have not had a problem with the laxative effect, so I prefer a couple of magnesium capsules. Results may vary, and I'll have more evidence after the next marathon.

Most-Recent Test Results:

Test    May 30    Jun 27    Jul 25    Aug 22     Remarks
M-spike g/dL 1.0 1.0 1.1 0.9 \ Tumor marker
IgG mg/dL 1070 1300 1290 1110 / Tumor marker
Lambda mg/dL 3.72 2.61 3.10 2.93 L free light chains
Kappa mg/dL 2.00 1.95 1.67 2.00 K free light chains
Ratio 0.26-1.65 0.54 0.75 0.54 0.68 Kappa / Lambda
Calcium mg/dL 9.3 9.5 9.7 10.1 OK
Creatinine mg/dL 1.3 1.2 1.3 1.1 Kidney, OK
HGB g/dL 14.8 15.1 14.5 15.6 Hemoglobin, fine
RBC M/uL 4.33 4.38 4.23 4.44 Red cells, OK
WBC K/uL 4.8 5.1 4.9 4.2 White cells, OK
ANC K/uL 2.7 2.4 2.6 2.0 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.

Saturday, July 27, 2013

Avoiding Myeloma Progression

I dread the day that my myeloma figures out how to defeat the Pomalyst. Every 28 days we check for problems, and I never really breathe easy until I get the numbers. So far, though, the Pomalyst (2 mg daily as a single agent) has kept my M-spike stable at around 1.1 or so. Why hasn't it evolved into a form that can evade the Pomalyst?

Here is my theory:

First, we know that myeloma is initially caused by a genetic mutation in a plasma cell or in a stem-cell-like precursor cell. That cell produces more cells just like it. The initial mutation may be spontaneous, but more likely is caused by damage to the cell's DNA by an environmental factor such as radiation or nasty chemicals. Benzene, for example, a component of gasoline, is a known cause of myeloma. That first mutation has to surmount several hurdles for the cell to become cancer, and most mutations fail, because they are detected and squashed by the immune system, or because the cell dies as it is programmed to do when something goes wrong. Mutations actually happen frequently, but very, very few become cancer - only about 1 adult in 12,000 is diagnosed with myeloma in the USA each year.

On the Family Means
Garden Tour two weeks ago.
Nevertheless it happened to me and I have myeloma, now being kept at bay by Pomalyst for as long as the myeloma doesn't mutate again. Unfortunately, though, most of the hurdles have already been met, and my errant plasma cells only need a simpler mutation that will allow one of them to escape the effect of the Pomalyst. In fact, researchers have identified "sub-populations" of slightly-different myeloma cells in some patients, and have found that some of those cells can be resistant to the patient's current treatment, eventually enabling the myeloma to defeat that treatment. I believe that is how myeloma progresses in the face of a treatment that was once effective.

Hence, as I see it, my job is to do my best to minimize more mutations and their resulting sub-populations. If it was important to avoid cancer in the first place, it is even more important now, and the effort is the same.

Avoiding (more) Cancer:

This is a two-pronged job: (a) Minimize my exposure to environmental contaminants, to reduce DNA damage that might cause a mutation, and (b) enhance my immune system to maximize the chance that any mutation will be detected and stopped.

Reducing My Exposure to Environmental Damage:

This is a huge subject, enough for thick books. Very briefly, our family eats "real" organic foods where that counts the most, we avoid GMO foods and acrylamides, we have reduced our exposure to BPA and other contaminants from food packaging and dishware. I have stopped using insecticides and nearly stopped using herbicides (except to go after some enthusiastic poison ivy), and I wear a fumes mask anytime I use a small engine (lawn mower, chainsaw, snow blower) or transfer gasoline into one. There is much more - perhaps I'll blog about it all at another time.

Strengthening My Immune System:

I believe that I have some control over at least four things that can affect the health of my immune system: (1) Nutrition, (2) Exercise, (3) Sleep, and (4) Stress.


We stick to "real" food, defined as food that my grandmother and her mother would have recognized and might have served to their families. We eat plenty of organic vegetables and even more organic fruit, along with a variety of nuts. We do eat meat, though the red meat is always 100% grass-fed beef and poultry is always organic. Dairy products are mostly organic too, and always rBST/rBGH-free. We do not drink soda. Last October, Dr. Brian Durie of the International Myeloma Foundation gave a landmark teleconference, Ten Steps to Better Nutrition, for myeloma patients (and indeed for everyone!), which is available as a podcast, with slides. It describes what we do at our own house, and could be the bible for anyone with cancer and, in fact, for anyone who eats.

Since that teleconference Dr. Durie has published at least two more articles on nutrition:

Hardly a week goes by without a news report advising us of another way that exercise improves our health. One way, of course, is that exercise improves our immune systems. Indeed, there is an International Society of Exercise Immunology with biennial scientific symposia focusing on research directed towards the improvement of health and the prevention and treatment of disease through physical activity. There is even a new field of "exercise oncology," where studies have shown that moderate intensity exercise is associated with increased survival in several different kinds of cancer. Exercise Immunology Review 2013 (PDF).

I do not doubt that physical activity benefits my immune system. As with most good things, though, too much can work to my disadvantage and there is some chance that extreme exercise, such as a marathon, may temporarily suppress the immune system somewhat. The benefit does not actually come from the 26-mile race itself, but from day after day of training for the race, shorter runs that are energizing and which leave me feeling full of life. My immune system could do just as well if I never ran a marathon, but my family and I like traveling to marathons and running them, and we appreciate the incentive to keep training for the next one.


Again, numerous studies show that the immune system cannot function well without sufficient sleep. After eight hours of sleep I wake up clear-headed and ready to meet the day, but with much less than eight I wake up feeling tired, inefficient, and maybe even a bit cranky. Everyone is different, but eight is my minimum, and I make every effort to get that much, uninterrupted and in a cool, dark, quiet room.

Cat administering
anti-stress treatment

I don't have much to offer here. I always feel as though I have too much to do and not enough time to do it. I have a lot to learn about dealing with stress. My cat knows more about it than I do - when she climbs into my lap, we both settle down and take a few minutes off from the hustle-bustle of the day.

Bottom Line:

After more than five years on Pomalyst my myeloma still has not progressed, which means that no mutation of the original myeloma has yet been able to survive the immune system and rise up to defeat the Pomalyst. I believe that my efforts to reduce DNA damage and to strengthen my immune system may have helped, perhaps a lot, but I can't prove it. You decide.

Pomalyst Study Cycle 70:

IgG was basically unchanged this month, compared with last month, at 1290 mg/dL. M-spike was 1.1 g/dL, compared with 1.0 last month, but it isn't very accurate and probably should have been 1.1 last month. Light chains wobbled a little but I never know what to think of them anyway.  Dr YLH and I agreed that the myeloma remains stable after 70 28-day cycles.

Most-Recent Test Results:

Test    May 02    May 30    Jun 27    Jul 25     Remarks
M-spike g/dL 1.1 1.0 1.0 1.1 \ Tumor marker
IgG mg/dL 1060 1070 1300 1290 / Tumor marker
Lambda mg/dL 2.89 3.72 2.61 3.10 L free light chains
Kappa mg/dL 1.94 2.00 1.95 1.67 K free light chains
Ratio 0.26-1.65 0.67 0.54 0.75 0.54 Kappa / Lambda
Calcium mg/dL 9.4 9.3 9.5 9.7 OK
Creatinine mg/dL 1.2 1.3 1.2 1.3 Kidney, OK
HGB g/dL 14.9 14.8 15.1 14.5 Hemoglobin, OK
RBC M/uL 4.40 4.33 4.38 4.23 Red cells, low
WBC K/uL 4.5 4.8 5.1 4.9 White cells, OK
ANC K/uL 1.5 2.7 2.4 2.6 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.

Thursday, June 27, 2013

Mixed Results

Pomalyst Study Cycle 69

Thursday, June 27, 2013:

M-Spike and IgG:

IgG went up 21% in the last 28 days, from 1070 mg/dL last month to 1300 this month. M-spike comes in later but usually follows IgG closely, so I left Mayo for home assuming that the cancer markers, with an up-and-down history, were going up again. After the 90-minute drive home, though, I checked into Mayo Clinic on line and M-spike had a value of 1.0 g/dL (1000 mg/dL), unchanged from the previous cycle. How could that be?

IgG is the sum of the "bad" IgG, the useless monoclonal proteins produced by the myeloma cells and measured by the M-spike, and the "good" IgG, which is an essential part of the immune system. Assuming that error in the the tests themselves could not be large enough to produce this discrepancy between IgG and M-spike, one explanation is that the "good" IgG is up this time, possibly because of a recent sinus infection. I'll go with that for today, and we'll see what happens next month.
All organic

Light Chains:

In recent months both the Lambda and the Kappa light chains have been creeping upward. Last month both were above their reference ranges, for the first time ever. Today, though, both are down a little, each almost exactly at the top of its reference range. I guess I like that better. The Kappa/Lambda ratio is smack in the middle of its reference range, which is a good thing. Whatever - I don't know what to think about the creeping light chains.


Mayo performed an ECG on me this time, as they do every third month, and as always the doctor who reported on the ECG complained about the low heart rate of 44 beats per minute, but nothing else: "Marked sinus bradycardia, otherwise normal ECG." The heart, to quote a Timex advertisement, just "takes a lickin' and keeps on tickin'." I wonder how high it goes these days when I run. I should see if my 11-year-old heart-rate monitor still works after being shelved for years.

Most-Recent Test Results:

Test    Apr 04    May 02    May 30    Jun 27     Remarks
M-spike g/dL 1.1 1.1 1.0 1.0 \ Tumor marker
IgG mg/dL 1230 1060 1070 1300 / Tumor marker
Lambda mg/dL 3.30 2.89 3.72 2.61 L free light chains
Kappa mg/dL 1.80 1.94 2.00 1.95 K free light chains
Ratio 0.26-1.65 0.56 0.67 0.54 0.75 Kappa / Lambda
Calcium mg/dL 10.0 9.4 9.3 9.5 OK
Creatinine mg/dL 1.5 1.2 1.3 1.2 Kidney, OK
HGB g/dL 15.5 14.9 14.8 15.1 Hemoglobin, OK
RBC M/uL 4.53 4.40 4.33 4.38 Red cells, lowish
WBC K/uL 5.2 4.5 4.8 5.1 White cells, OK
ANC K/uL 2.2 1.5 2.7 2.4 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.

Tuesday, June 25, 2013

Very Bad Luck

Saturn Ion.  Their other
car looks just the same.
Our son and his sweet wife are enduring more than their share of tribulations lately, starting with her diagnosis of advanced ovarian cancer, then a house burglary on Easter Sunday, then the death of his grandfather (my Dad), and finally, on the very day of Dad's funeral, a lightning fire resulting in the total loss of their brand-new home.
Living Room

The local NBC station here, KARE 11, ran this story the day of the fire.

Friends asked if they could help, so the beleaguered couple established a 'Fire Recovery Fund'. Please feel free to pass it on if you know of someone else who might be interested in the story.

Sunday, June 16, 2013

New Era

My dad died a few days ago, a wonderful gentleman, age 100, as sharp as anyone, still with more friends than most of us could ever hope to have. He was very handy and quite smart, and all his life he helped anyone who asked, with no expectation of a return.  He had ten visitors on the very day that he died.

He was also my best fan, apart from my sweeties, always asking for the itinerary of our next marathon trip, wanting to know the results, and appreciating the occasional news story about his marathoner with myeloma. His loss leaves an emptiness for many people and for me especially. I love you Dad, go with God.

Pomalyst Study Cycle 68

Thursday, May 30, 2013

M-Spike and IgG:

IgG was 1070 mg/dL, essentially identical to last month's measurement of 1060. M-spike was 1.0 g/dL, down from 1.1 last month and as low as it has been since February. That's good news - the myeloma appears stable.

Light Chains:

Maybe, though, something else is happening. I have IgG Lambda myeloma, meaning that the naughty cancer cells produce some extra Lambda light chains. The Pomalyst has kept those within the reference range most of the time, but they have been creeping up slowly over the last eight months or so, now higher than they have been since the Pomalyst treatment started in 2008. Furthermore, the Kappa light chains have also been creeping up, topping their reference range this month for the first time ever. The ratio is still normal, but both Lambda and Kappa are above their reference ranges and I don't know what that means.

Last month I asked Dr L about this, and she suggested that it may be due to kidney backup in older men with benign prostatic hyperplasia (BPH), which is a problem that I do have. Light chains in the blood are cleared by the kidneys. This theory does not explain why the chains are increasing, however, because my BPH has not changed perceptibly over the eight months and other kidney function indicators, such as creatinine clearance, have not changed either.

This month Dr YLH suggested that the increased chains might not be junk from the cancerous cells, but might be real chains, an important part of the immune system, responding to my infection - I have a cold. I like that theory, which implies that the chains will be back down next month when the cold is gone, but it doesn't explain why the levels of both chains have been rising over eight months.

Just today, at a seminar hosted by the International Myeloma Foundation, I spoke with another very knowledgable myeloma specialist who assured me that he had seen this before in people who were taking IMiD's for long periods, and that was not predictive of anything. Just a slightly-interesting artifact - I could ignore it.

I'm a worry-wart though, somewhat suspicious of such an easy answer, and I don't know what to think. This month's blood draw was just four days after a marathon, but next month's will be five days after a marathon, so if the light chains are affected by running I won't know for two months. Meantime I'll try to take the doctors' advice and forget about it.

On the other hand, if you have an idea, I'm all eyes.

High Blood Pressure:

Last month my blood pressure at Mayo was 155 over something, I can't remember the lower number. Dr L suggested that I get a monitor and keep track of it. After a little research I ordered an Omicron BP 652 "Automatic Wrist Blood Pressure Monitor." After keeping track off an on for most of May, these are the results for 57 readings at varying times of the day:

  Average systolic 132
  Average diastolic 72
  Maximum systolic 158
  Maximum diastolic 80

Average heart rate was 45, which is normal for me. I suppose that the BP readings are on the edge of high, or more, and maybe I should talk to my primary physician to discuss them.

Most-Recent Test Results:

Test    Mar 07    Apr 04    May 02    May 30     Remarks
M-spike g/dL 1.1 1.1 1.1 1.0 \ Tumor marker
IgG mg/dL 1290 1230 1060 1070 / Tumor marker
Lambda mg/dL 2.84 3.30 2.89 3.72 L free light chains
Kappa mg/dL 1.46 1.80 1.94 2.00 K free light chains
Ratio 0.26-1.65 0.51 0.56 0.67 0.54 Kappa / Lambda
Calcium mg/dL 9.4 10.0 9.4 9.3 OK
Creatinine mg/dL 1.2 1.5 1.2 1.3 Kidney, OK
HGB g/dL 14.4 15.5 14.9 14.8 Hemoglobin, OK
RBC M/uL 4.26 4.53 4.40 4.33 Red cells, low
WBC K/uL 4.7 5.2 4.5 4.8 White cells, OK
ANC K/uL 2.50 2.20 1.50 2.70 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.

Friday, May 3, 2013

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.

Thursday, March 7, 2013

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.

Friday, February 8, 2013

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

Thursday, February 7, 2013

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.

Saturday, January 12, 2013

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:

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.