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.