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 has 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 it is a must see event. You can watch a rebroadcast of this program if you CLICK HERE. As a followup to the broadcast Katie Couric conducted an interview with Tom Brokaw and you can see it if you CLICK HERE. Tom indicates he hopes he can do for myeloma and cancer what Katie has accomplished for colon cancer. Tom, we your fellow myeloma patients, hope and pray that you do bring myeloma out of the shadows, and we thank you so very much for becoming a visible and vocal myeloma advocate.
One of the first things I came to understand is that the title "My Lucky Life Interrupted" is such an understatement, and Tom says maybe that was due in part to his Anchor Man mentality. His life was not just interrupted, it was saved. One in 5 patients die in the first 2 months after diagnosis. Two in 10 have what is called high risk myeloma, which has a 2 year life expectancy. First, he had back pain and it was misdiagnosed as either age-related or just arthritis. Based on his pain, he had active myeloma, and even with his resources,and I assume excellent general medical care, he was misdiagnosed. In the headline he said his life was LUCKY, and oh how lucky it was in that Myeloma, if untreated, has a life expectancy of just 7 months. Soon after this misdiagnosis, he was lucky enough to go to the Mayo Clinic for his annual checkup, and a low white blood cell count along with bone pain raised a red flag to people at one of the premier health facilities in the world. A skilled and knowledgeable General Practitioner scheduled additional tests, which resulted in the correct diagnosis of multiple myeloma. What if he had not gone to a Mayo, but a local hospital for his checkup, like most people in this county do? Would they have caught this or just chalked it up to an infection or arthritis?
Some other interesting takeaways that I had were the following:
- 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 what about those 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% copay if they do not have supplemental insurance. Tom's RVd 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 are dismal.
- Tom mentions you need someone to be your advocate, and he chose his daughter, who was a doctor, to learn about the disease, 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 all who help to ease the burden for the patient and caregiver. I truly was 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 you are in remission, your tumor has disappeared and if it remains so for 5 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 rairly 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 in 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 to the patient.
I want to thank Tom for not keeping his illness to himself and his family, but helping to bring it out of the shadows. We need general practitioners to understand the symptoms and order the tests to diagnose this disease and save lives. If it can be found early, the American Cancer Society published data shows you can live three times as long if myeloma is found in stage 1 rather than if it is found later in the disease progression or stage 3.
Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
One of the first things I came to understand is that the title "My Lucky Life Interrupted" is such an understatement, and Tom says maybe that was due in part to his Anchor Man mentality. His life was not just interrupted, it was saved. One in 5 patients die in the first 2 months after diagnosis. Two in 10 have what is called high risk myeloma, which has a 2 year life expectancy. First, he had back pain and it was misdiagnosed as either age-related or just arthritis. Based on his pain, he had active myeloma, and even with his resources,and I assume excellent general medical care, he was misdiagnosed. In the headline he said his life was LUCKY, and oh how lucky it was in that Myeloma, if untreated, has a life expectancy of just 7 months. Soon after this misdiagnosis, he was lucky enough to go to the Mayo Clinic for his annual checkup, and a low white blood cell count along with bone pain raised a red flag to people at one of the premier health facilities in the world. A skilled and knowledgeable General Practitioner scheduled additional tests, which resulted in the correct diagnosis of multiple myeloma. What if he had not gone to a Mayo, but a local hospital for his checkup, like most people in this county do? Would they have caught this or just chalked it up to an infection or arthritis?
Some other interesting takeaways that I had were the following:
- 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 what about those 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% copay if they do not have supplemental insurance. Tom's RVd 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 are dismal.
- Tom mentions you need someone to be your advocate, and he chose his daughter, who was a doctor, to learn about the disease, 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 all who help to ease the burden for the patient and caregiver. I truly was 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 you are in remission, your tumor has disappeared and if it remains so for 5 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 rairly 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 in 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 to the patient.
I want to thank Tom for not keeping his illness to himself and his family, but helping to bring it out of the shadows. We need general practitioners to understand the symptoms and order the tests to diagnose this disease and save lives. If it can be found early, the American Cancer Society published data shows you can live three times as long if myeloma is found in stage 1 rather than if it is found later in the disease progression or stage 3.
Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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