Pat’s Place: Tracking Myeloma Numbers
Published: Jan 27, 2011 4:33 pm
Last week I shared a list of questions all multiple myeloma patients should consider.
Let’s cover the first question this week: “How carefully should a patient be tracking and following their numbers?”
There is no right or wrong answer here. What is important is you begin to understand which numbers are important. This varies from patient to patient.
Lab (blood work) reports can be overwhelming! Ask your nurse or doctor to point out the important numbers.
For example, creatinine levels help monitor kidney function. Multiple myeloma patients can be at risk for reduced kidney function or failure due to high calcium levels in the blood and urine—another important number to check.
The complete blood counts (CBC) portion of the report breaks out your white and red blood cell counts, neutrophils, and platelets. These numbers are almost always important, since using thalidomide (Thalomid), Revlimid (lenalidomide), Velcade (bortezomib), or other chemotherapy drugs tends to depress these numbers to sometimes dangerously low levels.
Some patients rely on urine testing to track their myeloma. But a large majority of us use special blood tests to help doctors monitor our progress.
IgG or IgA blood protein numbers can help you and your doctor get a feel for how active your myeloma may be. A small portion of patients are IgD, IgE, or IgM.
But a far more sensitive (and expensive) test can measure your monoclonal (M) protein levels, known as your M-spike. M protein is produced by myeloma cells. The higher the M protein, the more myeloma cells are present somewhere in the body. Sometimes M-spike numbers are accompanied by a written pathologist interpretation describing what he or she saw as they conducted your test.
Only specialty labs are equipped to do this—hence the high cost. Your M-spike numbers may or may not be included on the same pages as your CBCs and regular blood work. I have seen it done both ways.
I have had blood work done—and received printed or email reports—from five different hospitals or cancer centers since I was diagnosed. All used different labs, which means each report also looked different.
But with practice and a general understanding of which numbers are important, you can begin to pick the important numbers out—even if you aren’t familiar with a particular format.
After reading this and speaking with your nurses and doctors, you should have a better idea about which numbers are important for you to track.
But how? I simply keep my results in a folder. I highlight the important numbers and keep the test reports in order.
But I am not too hung up on my numbers. Some patients like to do more. You can record them in a ledger or in a spreadsheet on your computer.
The International Myeloma Foundation also offers a program called Patient Manager that you can use to keep track of upcoming appointments and to chart your test results.
It’s up to you though. Some people track, some don’t. Some people find it helpful, and others even find it fun. Do what works best for you.
Next week I will answer “How much does a patient need to know about various treatment options?”
Before signing off, I wanted to thank everyone who left comments or emailed me following last week’s column. I want everyone to know that, despite some pain in my right hip, I am doing just fine. I will know more about my treatment options soon.
So until next week, feel good and keep smiling! Pat
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- MGUS And Smoldering Multiple Myeloma: Experts Identify Risk Factors For Disease Progression And Establish Monitoring Guidelines – Part 1: MGUS