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from Patient Power on Vimeo. BY JENNY AHLSTROM Four years ago, I attended a patient seminar after I finished treatment. I asked over 150 friends in attendance to raise their hand if they knew their multiple myeloma genetics. Less than 10% of them did. I was pretty new to myeloma, but I was shocked. I had just had a genetic test done (called MyPRS) and learned that I had a very rare high-risk feature, while my other results looked quite good. My doctor said that we were fighting the enemy and should know as much about it as possible in order to develop the best game plan to fight it. I believed him then and still think it's a great strategy. Multiple myeloma is a very complex disease. According to Dr. Brian Van Ness, myeloma expert from the University of Minnesota, most patients have on average 5 different types of multiple myeloma at diagnosis. This means that all of the myeloma cells are not the same genetically. Some have aggressive features (like deletion 17) and others have unaggressive features (like 11;14). Knowing what you have matters! Sometimes, myeloma treatment may knock down one type but not quite get all of another, which is why relapse is common for most myeloma patients. And sometimes there are specific therapies that are better for specific genetic features, like bortezomib, which has been shown to be especially good for patients with del17. I've had myeloma friends take a head-in-the-sand approach and say they'll let the doctor worry about that. What their avoidance strategy tells me is that they believe that they have little control over their own outcomes. Not true! You can help craft your own care strategy, but you have to educate yourself to ask your doctor at least semi-intelligent questions. You will undoubtedly learn more over time. Can knowing your genetic features change your treatment plan? A few years ago, the answer may have been "no." But today, times are a-changing. Personalized care for your specific type of myeloma is the future of myeloma care. When the average myeloma patient is diagnosed, almost all will receive what is known as the FISH (fluorescence in situ hybridization) test which can give some genetic results, but as Dr. Rafael Fonseca and Dr. Frits vanRhee explain, the FISH test only gives results if you run the right probes. In other words, you get what you test for. When I was diagnosed, I had a FISH test done, but it didn't pick up my high-risk feature. I'm not sure if the probe to test for this particular feature wasn't run at the time, or if the test simply didn't pick it up. In any event, the FISH was still an important test to get, but didn't tell me everything I needed to know. One very helpful tool available today is the MyPRS test by Signal Genetics, originally developed by the University of Arkansas for Medical Sciences (UAMS) and based on over 30 years of management for over 10,000 patients. According to Signal Genetics, the 70-gene prognostic signature has been applied to over 4,700 patients in studies performed in 4 countries and described in 17 peer-reviewed publications. It is important to get this test when you have active disease or smoldering myeloma, because if you are in a remission status, the test can't pick up the genetic features when the myeloma cells are gone. The MyPRS® test gives you three points of key information: 1. Prognostic Risk Score: This analyzes 70 key gene signatures from the whole genome expression profile and gives you a risk score. If the results are close to a particular classification, you are given a "borderline" result. The score has a number, a classification of low or high risk and a prognosis (good or poor). Here's what it looks like on the report: The prognosis relates to overall survival. If you are considered high-risk, the probability of overall survival at 5 years is 38% whereas low-risk survival has a probability of overall survival at 5 years is 83%. Knowing your results will make you more aware and active in your own care. 2. Molecular Subtype Results Next, the 700-gene set from the patient's whole-genome profile is divided into seven subtypes.
This part of the test looks at 816 genes to predict specific abnormalities for myeloma patients. These are matched up agains the standard cytogenetic techniques (like the FISH) to essentially detect the same thing. The results are 89% sensitive. These tell you which translocations or gene deletions exist (like 14;20, 11;14, 4:14, 14;16, del 17, amp 1q or others) Originally from the UK but now at UAMS, Dr. Gareth Morgan, MD, PhD believes it to be a very valuable test and uses the information that the test provides to alter treatment approaches. Dr. Morgan notes:
We did significant work comparing the GEP70 to i-FISH, the interface FISH which people out there use as a standard and there is no doubt that the GEP70 was more accurate, shall we say, at identifying patients with high-risk behavior. It doesn’t identify all of the high-risk behavior, but if you are GEP70 positive, your clinical outcome is going to be aggressive and you are sure that people are going to relapse early and if you know that data, you alter your clinical approach to treatment – that is very, very clear and that is becoming more obvious. So it is good. It doesn’t identify all high-risk patients and in low risk there are some people with high-risk behavior, but if you test positive for high-risk, then it is sure that the disease will behave badly and need their treatment altered.
This test is Medicare approved. You are unique and knowing more about your disease will help you become an engaged partner in your care. If your doctor hasn't mentioned this test, ask him or her about it. It is your life, and your myeloma, and you need all the ammunition you can for your very best outcomes.
You can register to join the Myeloma Crowd MCRI 12-Day Challenge to receive daily emails about each challenge. We'll keep you up-to-date on the daily challenge, track your social media shares and tell you who won the prize of the day. Our goal is to have thousands of people taking action - patients, caregivers, siblings, grandkids, long-lost friends and anyone who knows and loves a myeloma patient! Register Thanks to our 12-Day Challenge sponsors, Takeda Oncology and Signal Genetics.
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 HealthTree Foundation (formerly Myeloma Crowd).