Saturday, August 2, 2014

Better Still

Today I felt much more like myself, even went for a stroll and mowed a little bit of the lawn.  Temps are normal and the pulse oximeter regularly shows numbers in the high 90's.

The pneumonia is on the run, and I won't post any more about it here unless there is a dramatic reversal.

Friday, August 1, 2014

Recovering at Home

They let me out of the hospital this noon, and I like being with my loved ones.  I feel a little better than yesterday, but the regimen is about the same at home as it has been in the hospital. Levaquin 750 mg once daily, probiotics to mediate the effect of the Levaquin on the stomach, lots of sleep.

I'm pretty sure that the pneumonia is viral, not bacterial, because it has responded so slowly to three different antibiotics.  Nevertheless I'm taking the Levaquin, despite its risk to the Achilles tendon, in case it really is a virulent bacterium.

Right now my temp is generally around normal, which is a definite improvement, and I have some appetite.  However, blood oxygen isn't much better than it was when I called 911. I have my own pulse oximeter now, which normally would have me at 98 or 99%, but now typically shows low 90's, which means that my lungs are not yet working very well.

Time will tell.  More tomorrow, probably.


Thursday, July 31, 2014

Feeling a Little Better

Still in the hospital.  My temperature seems to have stabilized near normal, I'm coughing a little less, and blood oxygen (without supplemental oxygen) is up in the 94% range.  However, pulse rate and respiration rate are unchanged and much higher than normal, so the jury is still out.

For the medically inclined:  I was started on a Z-Pak (azithromycin) Monday, then in the hospital they added a cephalosporin IV antibiotic Tuesday.  By today (Thursday) we didn't see much progress, so the hospital doctor finally talked me into oral Levaquin, dropping both of the others. That dose was this noon , so it's had only about nine hours to take effect, and obviously I don't know which antibiotic regimen might be working, if indeed anything really is working.

I'm nervous about Levaquin, because it's one of the drugs that can cause the Achilles tendon to rupture.  If that happens my running will be dramatically curtailed (zero).  However I finally agreed to Levaquin because I didn't see progress on the other meds, and I can live without running but I can't run without living.

As always, I'll know more in the morning.  I'm still alive and there is a little more light at the end of the tunnel.


Wednesday, July 30, 2014

Pneumonia Again

July 30, 2014

CRAP! Pneumonia certainly puts a crimp in marathon training. I have a marathon coming up in early september, with a good plan for ramping up carefully to a 20-mile long run three weeks ahead. That's what you do. Setting aside the obvious life-threatening aspect of pneumonia, however, at the very least it puts a big crimp in the training plan.

I've had pneumonia five times in my life now; three times it was viral, once bacterial (last February), and now as-yet undetermined. In February the high-power IV antibiotics took effect within a day, and got me out of the hospital in two days. This time I've been in and out for two days already, and there is little evidence of improvement. I still have a little fever, low pulse oxygen level, a high pulse rate, and a high respiration rate. If it's viral instead of bacterial, prevous experience suggests that the resolution will take weeks instead of days. Grrrr.

Maybe I should just stop whining and be glad I'm still alive. Eventually I will be running again, but that's not the top priority.

I'll know more in the morning. Perhaps the pneumonia will take a sudden turn for the better, or the doctors will try something different.

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.