Tuesday, March 11, 2014

Cardiac Reserve

Thursday, March 6, 2014    Pomalyst Study Cycle 78:

My Doctor L and the crew of three CNP's were all unavailable for this visit to Mayo, so I saw Dr MG instead. In terms of the Mayo Clinic hierarchy, that's an upgrade. We had met before, but he had not seen me as a patient. We quickly agreed that the myeloms was still stable, and he in fact commented that the Pomalyst trial has been a home run for me. Indeed! Six years now, and still counting - I am so fortunate. IgG was up just slightly, but Lambda light chains are down a little, and maybe both changes are within measurement error anyway. No change. I am starting Cycle 79, continuing to hope and pray.

We discussed last month's influenza A and accompanying pneumonia at some length. He gave me a rather thorough chest exam, listening carefully to breath and heart sounds, and pronounced the breathing clear and the heartbeats strong and steady.

Three different doctors have treated or examined me now regarding that pneumonia, and all three have volunteered, without my asking, that my fitness may have played a role in my recovery. Today Dr. MG used the term "cardiopulmonary reserve," (I think that was the term), and remarked that a person without that reserve might might have recovered more slowly, if at all.

Of course there is no proof that fitness played a part, only opinions. Nevertheless I'm a true believer, and I think that my immune system may be stronger because of that fitness. To achieve that, we:
  • Eat the best food that we can find;
  • Get plenty of vigorous exercise;
  • Get enough sleep, and;
  • Do our best to manage our stress.
So far I have not found anyone in the know who disputes the potential benefits of that lifestyle.

Most-Recent Test Results:

Test    Dec 12    Jan 09    Feb 06    Mar 06     Remarks
M-spike g/dL 1.1 1.0 0.9 1.1 \ Tumor marker
IgG mg/dL 1150 1280 1260 1300 / Tumor marker
Lambda mg/dL 2.69 3.64 2.70 3.51 L free light chains
Kappa mg/dL 1.32 1.52 1.03 1.29 K free light chains
Ratio 0.26-1.65 0.49 0.42 0.28 0.37 Kappa / Lambda
Calcium mg/dL 10.0 9.7 9.5 9.3 OK
Creatinine mg/dL 1.2 1.3 1.3 1.0 Kidney, OK
HGB g/dL 15.8 14.9 15.3 14.8 Hemoglobin, fine
RBC M/uL 4.54 4.33 4.41 4.17 Red cells, OK
WBC K/uL 3.7 5.1 4.3 4.4 White cells, OK
ANC K/uL 1.4 1.7 3.1 1.9 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.  Mostly Amazon now.

Monday, February 17, 2014

Good News from the Doctor

No pneumonia breath sounds, normal CBC, normal energy level.  Although Doctor S showed me what he thought was still a slight shadow of the pneumonia remaining on the x-ray, the radiologist’s report says "resolution of pneumonia on prior x-ray, with lungs now clear."  Hoo ha!  Anyway, two doctors now have told me that the x-ray results always trail the actual resolution of the pneumonia, so even if Dr. S is right and a little bit shows, the actual pneumonia is probably gone.

Dr S gave me the go-ahead to do whatever I want to do, including a marathon in two weeks, guided only by my sense of fatigue.  I will still take it easy and will get as much sleep as I can from now until then, just to be sure.  Maybe I’ll walk most of the marathon, who knows.  They do allow up to eight hours!

Monday, February 10, 2014

Home Again

The hospital let me go yesterday afternoon.  I slept well at home last night, and I feel much better.   The fever is gone, and I have an appetite, but the cough remains, with the stuffy nose, and loss of energy.  I'm still on an oral antibiotic, the same type that seemed to be working so well against the pneumonia in the hospital, and will see my regular doctor in a week.  Path to full recovery.

I still don't know why the hospital staff was gowning up every time they came in the room the first day.  I forgot to ask the doctor.  They stopped the gowns after a day, though, and on the last day most of them weren't even wearing masks.

Saturday, February 8, 2014

Oops - Intensive Care


Saturday, February 8, 2014,    Breaking News

My sweeties and I ran a lovely marathon in New Orleans last Sunday. On Monday we flew home, and by Tuesday morning I felt a scratchy throat. That came on fast, knocked me flat (weak, fever, aches, severe cough, nausea), and by Thursday it was diagnosed at Mayo as Influenza Type A. Yes, I did get the flu shot, last November. By Friday morning I was having trouble breathing and my local doc found pneumonia. He checked me into the ICU in Lakeview Hospital in Stillwater, MN.

The hospital staff treat me with respect, lots of smiles, but they put on gowns, masks, and gloves before they come into the room, and they throw those into a trash bin as they exit. Apparently they think I'm quite toxic, and I'm in a form of partial isolation. They haven't banned visitors, but you should probably stay away. My sweeties have been here, but they were asked to gown up too.

They are treating me with oxygen, oral azithromycin, IV ceftriaxone, decent food, breathing exercises, a nebulizer, and rest. I feel much better today than yesterday, with improvements in heart rate, respiration rate, blood oxygen, temperature, and every other measure. I'm still sick, but I might get home tomorrow (Sunday) to finish recovering there. Doc will tell me, and I will follow his advice - he's a good one. By the way, I have been able to continue the Pomalyst myeloma treatment throughout this ordeal.


Pomalyst Study Cycle 77

Actually I haven't posted a blog on the study since September, so this is five cycles. The myeloma has remained stable throughout, and the drug continues to work just fine, almost six years now.  On Thursday M-spike was down to 0.9 g/dL, with IgG at 1260 mg/dL.

The CBC that was done Wednesday, one day after the flu started, showed that neutrophils had doubled, and Dr L commented Thursday morning that it's a sign that my body is still able to respond that well to a threat.

More on the ICU saga soon.

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.

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.

Magnesium:

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.

Nutrition:

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:
Exercise:

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.

Sleep:

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.

Stress:
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.

Heart:

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.