Gary Petersen On Why People Beat Average Myeloma Life Expectancy Prognosis
Gary Petersen is the editor of Myelomasurvival.com and myeloma survivor. He is a constant source of inspiration and provides his valuable inputs on myeloma through his website. Here is one of his blogs on why most myeloma patients outlive the average life expectancy prognosis.
The new SEER data for multiple myeloma has been published by the National Cancer Institute, and the average life expectancy remains at 4 years for the second year in a row. However, some people beat the odds and live 10 to 20 years or more. When I was first diagnosed, the data for a person with dialysis-dependent kidney failure was just 3 months, and the overall average was 3 years. Now I am a 6 year survivor, so I have beaten the average life expectancy prognosis at the time, and this was with what was called a negative prognostic indicator (kidney failure). So I believe you can break a patient’s ability to beat the odds into two parts. Part one is disease dependent, or what was the hand that you were dealt. Part two is related to the level of care that is available to you.
Part 1 – Disease Dependent
Some people are just plain lucky and are given a form of myeloma that is not that aggressive. In other words they have myeloma, but it happens to be smoldering myeloma. This form of the disease can be present in the patient but not show any outward symptoms. It can remain in this mode for 5, 10, or even 20 years.
The age of the patient is very important, in that you are 2 times more likely to survive if you were diagnosed at 49 years of age or less. The average age of the typical myeloma patient is 70. You can read more on this subject at the link: http://www.myelomasurvival.com/3/post/2012/10/multiple-myeloma-the-younger-you-are-the-better-the-prognosis-a-much-improved-life-expectancy-and-survival-rate.html
Some people may have an active disease but do not have any of the negative prognostic indicators. These include, but are not limited to, deletion of chromosome 17p and translocation of 4;14 or 14;16 or 14;20. Your myeloma specialist will run the FISH test or other genetic tests to determine if you have any of these negative prognostic indicators. If you are considered high risk, the life expectancy is just half of the current average, or just 2 years.
The sensitivity of the disease to treatment is also important. My myeloma seemed to be very sensitive to Thalamid and Dexamethasone and put me into remission very quickly. Some people might have the same experience with Revlimid, Velcade, or Dex, or any combination of these drugs. If the disease comes back, as it often does, the re-application of the same regiment may continue to work for years. I know one patient who has taken Thalomid for years as his only treatment and remains in remission. This is working well for him.
And of course if the average is 4 years, half of the people will invariably beat the average.
I am sure there are other disease factors, however, what I want to discuss now is the part of disease control that you may or may not have more control over.
Part 2 – Quality of Care
There are some elements that you may or may not have much control over, the first of which is the availability of insurance. If you do not have insurance or have no access to care, the average life expectancy is less than one year. However, the Affordable Care Act may provide an option for the 15% who are not insured, and Medicare, Medicaid, and drug company assistance programs are also available. In addition, there are other programs we have discussed on the web site www.myelomasurvival.com that can be of assistance. Unfortunately without care, like people who need dialysis (which is always covered by Medicare), you will have below average life expectancy.
Not all oncologists, or hematologists are the same, and the data shows that some provide an average life expectancy of 10 years or more, while the average remains stagnant at 4 years. And obviously, if your myeloma specialist has an average patient life expectancy of 10 years, their patients will beat the average by more than twice the average. This is what I did when I chose to get my SCT(stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy. At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications. And I have found from my work on this site that centers like Mayo, Dr. Hari(Medical College of Wisconsin), UAMS, or Dr. Berenson’s (IMBCR) have very different approaches to treatment, but because they are expert in what they do they have similar results. A specialist for brain surgery is who you would chose over any other surgeon if you had a brain tumor, why would you not do the same for myeloma?
Myeloma specialists have access to drugs that other oncologists do not. Because they are the thought leaders, they are involved in clinical trials, and can obtain some drugs through other programs that lesser known oncologists do not have access to. Worse yet, oncologists who are not myeloma specialists may not even know that some of these drugs even exist. For example, some of the well connected specialists have access to unapproved drugs like Carfilzomib, or Pomalidomide through special programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options, and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like VRD for first line therapy which provides a response in 100 percent of patients. When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. Sometimes it is who you know!
I also think the quality of care that you receive can also be affected by the knowledge of the patient, and this can be obtained by doing your research on finding the best approaches to care by looking at the work of the best myeloma specialists on-line, and by going to great sites as listed in the Resource Section of www.myelomasurvival.com. In addition, joining a support group of the International Myeloma Foundation or the LLS (Leukemia, Lymphoma, and Myeloma Society) will provide more great information to improve your life expectancy. I have found that the average life expectancy of most of these support groups far out-performs the average. Knowledge is power!
There are 80,000 multiple myeloma patients, and if we can move the average from 4 years to 10 years life expectancy with the myeloma specialists, we could save 80,000 times 6, or 480,000 years of LIFE. You all can help by getting this message out to the myeloma patient community though Facebook and Twitter. Everyone knows someone who has myeloma or may have a friend or family member that can be helped by this information. With your help we can “SAVE LIFE”!