Today is Day 2 of Bike the Coast - an epic 600 mile ride from San Francisco to San Diego by myeloma patient Richard Hite and his team. Please support Richard's Ride!
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Avid cyclist Richard Hite wouldn't think about renting a bike and riding it 600 miles. If a bike isn't fitted properly, you can burn out early or even cause damage to your back or neck. Getting a bike fitted takes expertise and cyclists take great care transporting their bikes when they travel so that they stay in proper condition, personalized for the rider.
Getting your treatment "fitted" to you as a myeloma patient is equally important. You do this by getting specific genetic tests run before you get treated and again at relapse so you know what type of myeloma you are dealing with. If you begin treatment before these tests are run, you will not have any disease to test.
The most common test is called the FISH test. This is a panel that checks for common gene deletions (when you are missing one or both chromosomes), gene additions (when you have one or more copies of chromosomes) or translocations (when chromosomes break apart and swap places). About 30% of myeloma patients will have one or more of these genetic features.
Other genetics test are called Gene Expression Profiling (GEP) and Next Generation Sequencing (NGS). These are tests that are usually available only if you see a myeloma specialist. The Skyline DX test is a Gene Expression Profiling test that can tell you if you have high risk myeloma or not.
Myeloma researchers are learning more about how to treat patients individually, based on their genetics. For example, if you have a high risk feature, you may start with a four-drug combination and early stem cell transplant. You may also have longer maintenance therapy based on your genetics and how you responded to your first line of therapy. If you have no genetic features present, your doctor may suggest a different approach.
At relapse, you will want to have the genetics tests run again, because myeloma can change and acquire new mutations after therapy. Because the average myeloma patient is diagnosed with 5 different "types" or "clones" of myeloma, this is critical information you need to get your treatment properly "fitted" to you.
Special thanks to our Bike the Coast sponsors:
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.