|In the booth, I'm on the left|
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
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.
|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|
|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|
|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.|