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Spring 2005 Volume 6, Issue 4:
Patient Perspective: Tracking My Numbers
By Dennis McClure
My MGUS was found as a fluke during an annual physical in May, 1993. My total serum protein was slightly above the top of the normal range for that test and soon went back to normal. Otherwise, I still would not know that I have MGUS since I am still
06.09.05
I grew up on a farm near the small town of Eaton, Ohio, which is 25 miles west of Dayton. My parents always assumed I would eventually take over operation of the two family farms, but I had other ideas. I have always had a strong curiosity about how things work and therefore an interest in science in general and chemistry in particular. I earned a scholarship to attend Manchester College in northern Indiana, where I earned a BA in Chemistry and a full National Science Foundation Fellowship to attend graduate school at Indiana University in Bloomington. I was in a PhD program but the late 1960s were a bad time to be looking for a first job. I knew doctoral students a couple of years ahead of me who were not getting job offers, let alone something they wanted to do. For that reason, I stopped with a MS in Chemistry and earned a teaching assistantship to complete an MBA from the Indiana University School of Business. While at Indiana University I met my wonderful wife Margaret. We have now been happily married for 33 years.

In 1971, I went to work for a Johnson & Johnson company that made reagents for hospital testing and human injectable medicines derived from human blood serum. At this company, I had an opportunity to learn all about human antibodies and tests like Serum Protein Electrophoresis, which are now used for monitoring myeloma patients. In 1981, I went to work as Vice-President of Operations at Ricca Chemical Company in Arlington, TX. I was in charge of all of the technical parts of the company including manufacturing, packaging, quality control, quality assurance, research & development, and regulatory affairs.

In 1984, at work I spilled on my toes a chemical solution that contained an organic amine carcinogen that will absorb directly through the skin in its pure liquid form. Organic amines are often carcinogenic since they tend to bind tightly to DNA inside cells. Other acid ingredients in the solution formed chemical burn blisters on my toes requiring medical attention. My doctor documented my exposure to a carcinogen (o-Toluidine) at the time of the accident. While no one can prove one way or another if this event was the “smoking gun” that resulted in my Monoclonal Gammopathy of Undetermined Significance (MGUS), my oncologist says that this length of time is consistent with how high my abnormal monoclonal antibody concentration has risen to. This is an indirect measure of how many genetically abnormal plasma cells (that make abnormal monoclonal antibodies) remain alive in my bone marrow.

My MGUS was found as a fluke during an annual physical in May, 1993. My total serum protein was slightly above the top of the normal range for that test and soon went back to normal. Otherwise, I still would not know that I have MGUS since I am still symptom free. A serum protein electrophoresis test found an abnormal protein band (M-spike) during the test. This led to additional tests, including a bone marrow biopsy that produced the MGUS diagnosis with abnormal IgG Kappa light chain antibodies being produced. The IgG M-spike and quantitative IgG immunoglobulin monitoring test results have slowly but steadily increased: my M-spike was 0.8 g/dL in June, 1993, and has increased to 2.3 g/dL by February, 2005. My normal IgA and IgM antibody concentrations have been slowly depressed to about 18% of where they were in 1993. No bone lesions have been found so far in full skeletal x-ray, MRI, or radioactive bone scans.

I have had very few previous health concerns. I have always had as healthy a diet as anyone else I know and have never smoked. I have always gotten regular exercise and annual physical exams. My father lived to almost 91. My mother is still alive at 93. The only previous cancer in my family was my sister’s cervical cancer, which is cured. Growing up, my family always had a couple of acres of vegetable gardens on the farm so I acquired a joy for growing things. Ever since, I have had my own vegetable garden but I never use any pesticides except for fire ant powder in the lawn areas. We do not use any pesticides in our house.

At the February 2005 IMF Patient & Family Interactive Seminar in Dallas, it was stated that about 1% per year of MGUS patients progress to active myeloma. So, after 12 years, an MGUS patient has about a 12% chance of developing active myeloma. But, in the Spring of 2004, my oncologist said that I had moved into the Smoldering Myeloma stage and he was ready to start my first treatment with thalidomide and dexamethasone. Based on information I had learned, I told my doctor that my test results indicated that I was still in the MGUS category and shouldn’t yet be treated with anything. I wanted a second opinion. My doctor consulted with Dr. Raymond Alexanian (his mentor) at M.D. Anderson Cancer Center in Houston, Texas, and with Dr. Bart Barlogie (a former classmate) at Myeloma Institute for Research and Therapy in Little Rock, Arkansas. They both agreed that I was still at the MGUS stage and I should not yet be treated.

Being informed about my disease has saved me starting treatment that would begin development of treatment resistance prematurely. Sometimes, prior treatments disqualify you from some clinical trials, and even some treatment options. By not starting unnecessary treatment prematurely, I kept all of my future treatment and possible clinical trial options open. I feel very fortunate to be able to monitor my condition, stay up with new developments and treatments, and to have plenty of time in a non-crisis environment to develop an optimum treatment strategy, if and when the time comes to begin treatments. The IMF and the North Texas Myeloma Support Group (NTMSG) have been a big educational help and a new social outlet for me. Both organizations are noted for their strong emphasis on education. I already knew a lot from my own efforts, but there was a lot of extremely valuable information that I learned from other myeloma patients' actual experiences.

Marcia Sawyer, one of the NTMSG leaders, found an American Heart Association website that allows patients to organize their test results for Cholesterol, Blood Pressure, and Glucose. Marcia remembered that I already had my own system for charting my test results and suggested that we try to develop a similar tracking tool for myeloma patients' use. Yelak Biru, NTMSG's technical guru, volunteered to collaborate on this project. We wanted to create a test tracking system that was easy to use by people that are not particularly familiar with using computers, generalized enough to cover nearly all of the laboratory tests with numerical values done for myeloma patients, and to make the important test history trends more easily visible for all potential users. We presented a preliminary tracking tool design to our support group members and asked for feedback during a two-month trial period. We incorporated one suggestion in the final design. The final tracking tool has now been in use by local support group members for several months with no problems being reported.

The NTMSG Testing History Template is designed to help myeloma patients organize and record test results. This tool then creates trend line charts to make the test trends for the myeloma monitoring tests more visible and obvious. Often times, the trends for myeloma monitoring tests and response to treatments are more important than the absolute numerical values of those tests. The charts included in the NTMSG tracking tool make the trends for each significant myeloma monitoring test easy to visualize for patients and caregivers. Because many physicians do not have the luxury to spend extended time with each patient, I have found this tool to be a very efficient way to communicate with my doctor. It refreshes his memory about details of my case, saves him time in going back through my test records, and makes the test trends very easy to follow so that optimum decision-making is more likely to result. My oncologist liked this tool well enough that he plans to customize and use this tool to monitor all of his myeloma patients. I am happy to share the availability of this tracking tool with myeloma patients who are not already “tracking their numbers.”

A Picture is Worth a Thousand Words

To view the NTMSG tracking tool online, please visit http://northtexas.myeloma.org, click on Myeloma Resources, and then on Testing History Template. To utilize this tool, save the template to your computer. (Your data will be stored on your computer so no one else has access to it.) Fill in your laboratory test results on the Test Data Entry worksheet. Other significant details may also be recorded at the bottom of the worksheet. Then the most significant laboratory test data is displayed on four Test History Charts. Charts 1 and 2 display the trends for the tests used in the Durie-Salmon Staging System and the International Prognostic Index. Chart 3 displays some of the Prognostic Indicator Tests. Chart 4 displays Additional Tests For Myeloma Monitoring. Directions For Use describe how to customize these tools to better fit each patient. MT

NOTE: Questions, suggestions, and problems related to this tracking tool should be emailed to Dennis McClure at mmcclure@ix.netcom.com.


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