If you have not seen Tom Brokaw's Dateline NBC special of his multiple myeloma journey, you should. It may have done more to shine a light on a disease that has been invisible to the general population. A study in the UK uncovered only 3% of the public have ever heard of myeloma. Everyone has heard of leukemia and lymphoma, but not multiple myeloma, and myeloma is one of the three most common blood cancers. As a myeloma patient I believe this show is a must-see event.
- Tom mentioned that with his resources, he could travel to the best institutions, pay for whatever services he needed, and be under the care of the most knowledgeable multiple myeloma specialists in the world. In fact he was treated at Mayo, Dana Farber, and Memorial Sloan Kettering Cancer Center-- three of the very best in the world. He then asked about average or poor people who do not have those resources. It was an exceptional question but was left unanswered. Most patients are of Medicare age and they are required to pay a 20 percent copay if they do not have supplemental insurance. Tom's RVd (REVLlMlD-VELCADE-DEXAMETHAS0NE) regimen for a year can cost between $150,000 to $250,000. This is just the cost of the drugs. Medical expenses are the number one reason people file for bankruptcy. Without insurance your chance of surviving a myeloma diagnosis is dismal.
- Tom mentioned that patients need an advocate, and he chose his daughter who is a doctor. An advocate is there to learn about the disease and to navigate the continuum of varied treatment regimens, find the doctor which provides this regimen, and shepherd the patient through the process. In most cases, however, it is the patient or caregiver who becomes the advocate, and a loved one who becomes the caregiver and helps in this process. For many it becomes a family affair-- brothers, sisters, sons, daughters, in-laws, and friends-- who help to ease the burden to the patient and caregiver. I was truly blessed with a small army of helpers.
- Tom used the word remission, however, when it comes to multiple myeloma, remission has a far different meaning. In most solid tumor cancers, if a patient is in remission, your tumor has disappeared and if it remains so for five years, then you are often considered cured. Multiple myeloma, when measured with the best available measurement methods, may not show up in the blood or bone marrow but millions of individual cells may still be present in the blood, bone marrow, or hiding in bone lesions. Myeloma is rarely truly gone, just undetectable with current methods, unlike the solid tumor definition of remission. More often it returns and does so with a vengeance. Most myeloma specialists call this level of undetectable disease CR or complete response. Newer methods of detection are under development, such as MRD (minimal residual disease), which we all hope may one day be myeloma's true measure of remission.
- Tom did a great job outlining some of the hardships of myeloma. The agonizing and debilitating pain of bone damage, the loss of height for collapsed vertebrae, the absence of an adequate immune system during both active disease and treatment, and the need for supportive care (antibiotics, anti fungal, antiviral, platelets, blood transfusions, etc.) to prevent the common cold or flu from being terminal for the patient.
about the author
Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1