Thursday, July 24, 2014

Runner's World Cover Contest

I have entered a contest by Runner's World Magazine to determine who will be on their December cover. I hope you will click here http://covercontest.runnersworld.com/entry/655/ and vote for me. You can vote every day, and that would be marvelous. The contest goes until mid-August.

You can help even more by spreading the word on your own facebook or twitter page - let's make it viral! Be sure to include the magic hashtag #RWCoverContest.

Thanks!

Don W

Monday, July 14, 2014

We Miss Caroline Shallman

After a courageous three year battle with ovarian cancer, our sweet daughter-in-law Caroline died Saturday evening, July 12, 2014.  Here is a link to her husband David's heartfelt goodbye message on caringBridge:  http://goo.gl/SsKFF4

Information about the memorial service is listed here: http://goo.gl/Khg6bo

Here is her obituary in the Minneapolis paper: http://goo.gl/OAPuDo

Monday, June 9, 2014

Medical Innovation Ecosystem

Some alarmists complain that the cost of new, innovative cancer treatments will soon bankrupt the health care system, arguing that we must find a way to limit patients' access to them. When we point out that the new treatments represent only 0.5% (one half of one percent) of health care costs, those people claim that it doesn't matter, because the expense of new treatments is increasing at an increasing rate, and we must do something.

Horsefeathers, I say. The sky is not falling. Instead, the system is working just as it should, exactly as designed. A company innovates, inventing a new treatment and, after years of trials and against tall odds, finally makes a good, healthy profit on a treatment that saves and extends lives. This provides the financial and technological footing upon which that company can further innovate, advancing medical understanding to create an even better treatment, or a new treatment for another disease. The medical innovation ecosystem also includes governments, academia, research hospitals, and more, but the pharmaceutical companies always do the heavy lifting. That's the system we have, and it's working. Let's not mess with it.

Deep in discussion at ASCO
Costs of new treatments may indeed rise, but those new treatments will increasingly keep us out of hospitals and clinics, reducing those costs. Further, we will lead healthier, more productive lives, earning and spending, thereby contributing to the economy. Even more, as innovation extends our lives and improves its quality, we and our loved ones will enjoy more birthdays together, more weddings, graduations, anniversaries, more celebrations of all kinds, and lots more just plain good days. My life is worth it, not only to me but to those who love me. So is yours.

Oh but, the complainers say, there are unethical companies that are not playing fair, reaping excessive profits, or pushing expensive treatments which are no better than those they purport to replace. They imply that all of the pharmaceutical companies behave like that, but of course that is false. Indeed, some companies even promise that all patients who need their treatments will get access to them regardless of insurance status. If there are unscrupulous companies, let us find ways to "encourage" those companies to join with the ethical ones (as a lawyer I have ideas), rather than penalizing all of us patients. We have done nothing wrong and we simply want and deserve the best treatments available.

The patients' mantra is My Life Is Worth It. I wrote about this a few days ago here. We believe, above all, that we patients need a seat at the table wherever alarmists are trying to convince policymakers that the cost of cancer treatments must be reined in at the expense of patients. Here is the petition and here is where you can sign it. If you haven't, please do. Thanks!

Comments please.

Monday, June 2, 2014

My Life is Worth It

My wife, my daughter, and I were exhibitors at the annual meeting of the American Society of Clinical Oncology (ASCO) last weekend. At the invitation of ASCO, insurance companies and doctors were trying to invent a framework for limiting patients' access to the newest and most expensive cancer treatments, thereby providing those treatments only for those patients whose lives are judged worthy of them.

In the booth, I'm on the left
Unfortunately, we patients have been left out of that discussion altogether, so we were in a booth, making the point that patients should most definitely have a voice in any such discussions, and also pointing out serious errors in the "facts" put forward by the insurance companies and others. For example, people favoring mandatory limitations allege that the cost of new, innovative treatments will soon bankrupt the health care system, while the truth is that the modern cancer treatments represent only one half of one percent (0.5%) of today's healthcare costs.

At our booth we encouraged interested doctors and others to sign our petition, explaining that we want and deserve a seat at the table, to keep the facts straight and to tell our stories about the real value of our lives. Nearly everyone who heard our story signed the petition.
  • Here is a copy: Petition
  • If you would like to sign that petition, please follow this link: MyLifeIsWorthIt.org.
  • For more information about this issue please visit: ValueOfInnovation.org.
  • For more information about patient-centered health care, please visit the Center for Medicine in the Public Interest: CMPI.org
Thursday, May 29, 2014    Pomalyst Study Cycle 81

Pomalyst is one of the new, innovative, and targeted treatments. As part of the study I receive it free, so I don't know what it costs, but I suppose that, like most new therapies, the insurance companies would prefer not to pay for it when they can avoid it. Therefore, my interest in this issue is more than academic - I would like to be sure that I will continue to receive Pomalyst for as long as it does me any good, whether or not the study continues. In the eleven years since diagnosis two grandchildren have been born, and because of Pomalyst the older of those knows me, grandpa, which is a precious gift to both of us. Also in those eleven years I have led an active, vital life, running 82 marathons with my sweet wife and daughter, 55 of those while taking Pomalyst, the little daily miracle pill that continues to save my life.

IgG was essentially unchanged today, 1320 mg/dL, compared with 1340 last month. M-spike was up from 1.0 to 1.1 g/dL, but I think it should have been 1.1 last month anyway. Light chains behaved themselves, too, so the bottom line once again: My myeloma is still stable going into the seventh year. Yay!

We discussed three issues with Dr. YLH:
  • Heart rate: Last month my heart rate measured 38 in the electrocardiogram and again in the doctor's office. This is about five beats slower than usual, so we decided that I would keep a log for a month. I bought a $20 pulse oximeter, which measures pulse rate as well as blood oxygen. It showed resting (easy chair) pulse rates ranging from 35 to 47, with no discernible pattern in the variation. So, for now, the answer is "it varies," and we won't worry about it.
  • Thyroid: Last month TSH was 7.7 mIU/L, and this month 6.6, both slightly above the reference range. I have been taking a supplement which has seemed to help bring my thyroid into the correct range, but now it seemed to be failing. After discussion Dr YLH ordered several additional thyroid function tests on blood already drawn, and those came up normal, so I guess we won't worry about it unless I experience actual symptoms of hypothyroid.
  • I asked about the new Hevylite blood tests, capable of measuring the various components of the immunoglobulins in the blood with more accuracy than the currently available tests. It sounded to me like the new tests are not yet in widespread use at Mayo Clinic. In any case, I believe that the existing tests provide enough information to track my type of myeloma.
Most-Recent Test Results:

Test    Mar 06    Apr 03    May 01    May 29     Remarks
M-spike g/dL 1.1 1.1 1.0 1.1 \ Tumor marker
IgG mg/dL 1300 1270 1340 1320 / Tumor marker
Lambda mg/dL 3.51 3.26 3.38 2.59 L free light chains
Kappa mg/dL 1.29 1.37 1.39 1.25 K free light chains
Ratio 0.26-1.65 0.37 0.42 0.41 0.48 Kappa / Lambda
Calcium mg/dL 9.3 9.7 9.9 10.1 OK
Creatinine mg/dL 1.0 1.2 1.1 1.2 Kidney, OK
HGB g/dL 14.8 15.2 14.8 16.0 Hemoglobin, fine
RBC M/uL 4.33 4.41 4.17 4.52 Red cells, OK
WBC K/uL 4.4 4.3 3.8 5.2 White cells, OK
ANC K/uL 1.9 1.9 1.9 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.

Monday, May 12, 2014

Pomalyst Study Cycle 80

Thursday, May 1, 2014,    Pomalyst Study Cycle 80:

IgG was higher today than it has been for years, though only slightly. Last month IgG was 1270 mg/dL, now 1340 this month. However, M-Spike was 1.1 g/dL last month, down to 1.0 this month. 1.0 is right in the middle of the range of M-Spike for the last several years. So what are we to believe? Both of those changes are probably within the accuracy limits of the test anyway, so let's call it a draw; my myeloma is still stable. For whatever it's worth, the Lambda and Kappa light chains didn't change too much either

I'm happy for another month, Pomalyst is still doing its job, 2 mg every night as a single agent.  Six years and two months on that study, I love that little pill.

A month ago (end of cycle 79) we did a DEXA test, to assess bone density in the spine and hip. Bottom line: I have some osteopenia, though not osteoporosis. However, the actual bone density has not changed significantly (within the measurement error of the machine) since 2010. That's good. I do take Vitamins D3 and K2 every day, and according to some studies that may help. If you do this, though, please be aware that Vitamin K (full-spectrum, not K2) can affect clotting factors, which in turn could cause DVT's, heart attacks, and strokes. I use only K2, and I have also had clotting factors checked.

This month Dr. YLH and I discussed two other issues:
  • The backache that appeared during the Nashville Marathon. Dr YLH ordered an x-ray, which disclosed no myeloma lesions. All bones OK. Therefore, the problem must be muscular, and I can fix that, though maybe not in time for the next marathon.  UPDATE May 12: No problem in that next marathon, Fargo, on May 10.
  • A heart rate (pulse rate) of 38 on the electrocardiogram and again in the office while taking blood pressure. My HR is usually in the low 40's, typically 43, normal for me as a runner, so this is not a big departure. However it does seem to be a change, if only slight, so Dr YLH asked me to keep track of my HR for a month and I'm doing that.
Most-Recent Test Results:

Test    Feb 06    Mar 06    Apr 03    May 01     Remarks
M-spike g/dL 0.9 1.1 1.1 1.0 \ Tumor marker
IgG mg/dL 1260 1300 1270 1340 / Tumor marker
Lambda mg/dL 2.70 3.51 3.26 3.38 L free light chains
Kappa mg/dL 1.03 1.29 1.37 1.39 K free light chains
Ratio 0.26-1.65 0.28 0.37 0.42 0.41 Kappa / Lambda
Calcium mg/dL 9.5 9.3 9.7 9.9 OK
Creatinine mg/dL 1.3 1.0 1.2 1.1 Kidney, OK
HGB g/dL 15.3 14.8 15.2 14.8 Hemoglobin, fine
RBC M/uL 4.54 4.33 4.41 4.17 Red cells, low
WBC K/uL 4.3 4.4 4.3 3.8 White cells, OK
ANC K/uL 3.1 1.9 1.9 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.

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.