How familiar are myeloma patients with the tests that determine risk and potential good or bad myeloma outcomes? Risk factors for multiple myeloma outcomes include a patient's myeloma genetics and their imaging results (MRIs, PET-CTs, etc). But not all myeloma patients are aware that these essential test results are informative about how their disease will behave.
Michael Thompson, MD, PhD of the Aurora Cancer Care surveyed 558 myeloma patients from May 10, 2019, to January 9, 2020 using HealthTree Cure Hub for Multiple Myeloma, a patient data portal that helps accelerate myeloma research. De-identified responses were aggregated and reviewed.
Patients were asked:
Patients who received more than one imaging or genetic test were able to indicate by selecting more than one option, this total response is indicated in the tables.
|Test||At Dx, n = 1314 (%)||Since Dx, n = 1089 (%)|
|Bone density scan||95 (7.2%)||121 (11.1%)|
|Bone scan (nuclear med)||122 (9.3%)||77 (7.1%)|
|PET/MRI||52 (4%)||46 (4.2%)|
|PET or PET/CT||253 (19.25%)||272 (25%)|
|Spinal MRI||144 (11%)||126 (11.6%)|
|Whole Body Low Dose - CT||36 (32.7%)||27 (2.5%)|
|Whole body-MRI||144 (11%)||108 (9.9%)|
|X-ray skeletal survey||468 (35.6%)||312 (28.7%)|
X-rays were the most common form of imaging at 35.6%, however x-rays are typically not terribly useful in multiple myeloma, as there needs to be significant bone damage before the lesions can be detected using this type of imaging. A more reliable method for detection are the PET or PET-CT scans (19.25%) or whole body MRIs (11%), which according to this survey were used less frequently.
These results indicate that patients may need to ask their doctors about adequate imaging tools to properly diagnose myeloma and to watch for indications of relapse.
|Test||At Dx, n = 609 (%)||Since Dx, n = 529 (%)|
|Cytogenetics||162 (26.6%)||105 (19.9%)|
|FISH||295 (48.4%)||177 (33.5%)|
|GEP||20 (3.3%)||13 (2.5%)|
|NGS panel||8 (1.3%)||13 (2.5%)|
|None of the above||52 (8.5%)||135 (25.5%)|
|I don’t know||72 (11.8%)||86 (16.3%)|
The FISH test is the most common test run to determine the genetics of multiple myeloma with almost 50% of patients having received this test. Ideally this should be 100% of patients having received this test.
As a patient, you MUST know what type of myeloma you have because it can help chart the course of your myeloma care. For example, if you have high risk features you will want to talk with your doctor about treating your myeloma more aggressively and staying on treatment for longer periods of time to prevent the myeloma from growing out of control. As another example, if you have standard risk genetic features, you can also talk with your doctor about effective treatment approaches and perhaps time-bound maintenance therapy instead of maintenance therapy until progression.
Getting a genetic test should be performed at diagnosis prior to treatment and performed again at each relapse. If you try to test following therapy, there may be nothing there to test. These study results showed that few patients had received the Gene Expression Profile (GEP) test (which was developed at the University of Arkansas) or the more sensitive Next Generation Sequencing (NGS) test which is primarily used in clinical trials and can also identify what is called "point mutations" such as KRAS or NRAS.
The low 25.5% rate of patients receiving the FISH testing following diagnosis indicates that patients are not aware that the genetics of their disease can change over time. FISH testing on an ongoing basis is essential and is an easy test to order during a bone marrow biopsy.
In summary, Dr. Thompson's research shows that patients need more education about genetic testing. The survey also shows that barriers such as inadquate imaging ordering or lack of insurance payments for regular MRIs or PET-CT scans may be preventing myeloma patients from receiving adequate testing to both diagnose myeloma properly or identify early relapse.
Ask your doctor about both the imaging tests you need and the genetic tests you need as you obtain your regular care.
You can participate in surveys that contribute to myeloma research through HealthTree Cure Hub for Multiple Myeloma.
about the author
Felipe is an International Medical Graduate who is part of the HealthTree Patient Experience team. In his free time, he loves playing soccer, watching Netflix series and exercising.