BY GARY PETERSEN I first wrote on this subject in 2012, and I thought it time for an update. I still feel that many myeloma patients die sooner than they need to, and still do not understand why there is such a difference between what is and what could be. The what could be is that many centers have patients who live for an average of 10 years or more, and yet the average life expectancy of multiple myeloma patients overall is just 4 years based on the most recent National Cancer Institute survival data. So why the big gap between the two? Some of the reasons are as follows: 1) The miserable lack of awareness of Multiple Myeloma, the symptoms, and the complexity contribute to delayed and incorrect diagnoses. The NHS or National Heath Service in the United Kingdom has some of the best historic data that exists for Multiple Myeloma. Their research found that only 3% of the general population had ever heard of Multiple Myeloma. If you talk to most myeloma patients they will tell you the first time they heard of it was at diagnosis. Everyone has heard of leukemia and lymphoma, which are also blood cancers, but Multiple Myeloma? Rarely if ever. This lack of awareness translates into what I call the Multiple Myeloma Catch 22 (A can't win situation). In 25% of myeloma cases, the time from first symptoms to diagnosis takes over 306 days to diagnose. The average life expectancy for myeloma patients if not treated is 279 days. Because of this lack of awareness by the general public and general practitioners, this group of 25 percent of patients with a delayed diagnosis are late-in-the-game for best survival opportunities. If you find yourself in this group of patients, do not delay, and get to a skilled multiple myeloma professional immediately. You have no time to leave your care in the hands of a local oncologist. You need expert care immediately. Awareness is so important, we now have a number of initiatives in place to try to get awareness up from the miserable 3% of the population to 90% or more. This is a huge mountain to climb, but we have Mambo For Myeloma and Songs For Life awareness programs started by myeloma patient advocates. Please participate in these programs so that we might raise awareness, save life, and raise funds for a cure. 2) Quality of care is of utmost importance, including supportive care Instances of poor survival can easily be a result of treatment choices. I have seen patients who have been given Decadron as their only care, even though this is substandard treatment. I've also seen patients who choose holistic treatment or no treatment at all, believing that faith will heal them. Of course I understand these personal choices, but I certainly do not agree with these choices because I've studied survival data, and unfortunately the outcomes are usually inevitable. One reader commented that poor survival is caused by the lack of health insurance, and I agree that this has an impact. However, many myeloma patients have access to Medicare, and only 16.3% of the US population does not have health insurance. The differences in the death rate are not 15 or 20%, but 200 to 1000%. So these cases I believe are not the norm, and account for only a small amount of the difference. I can only therefore suppose that this difference must be in the quality of care. There are a number of people who somehow seem to beat the odds. Mike Katz, from the IMF (International Myeloma Foundation) is a 20-plus year survivor. Does the fact that he is aware of all the latest and greatest myeloma discoveries contribute to his longevity? Kudos to Mike for being part of the solution! Or Barb Hammack (who is no longer with us) but survived for 20-plus years and was an active member of a myeloma patient-to-patient forum. Her doctor went to school with Dr. Berenson, and Dr. Berenson (a myeloma specialist from LA) has some of the best survival statistics in the world. Are you starting to get the connection? The point here is that there is a big difference between the skills of a myeloma specialist, and that of your local oncologist. Andrew Shorr of Patient Power had an interview with a Dr. Bensinger (a multiple myeloma specialist) and asked the question about whether patients should seek a second opinion. His reply:
"I do think it's very important that patients with newly diagnosed myeloma consider a second opinion. And the reason is that this is not that common a disease. Despite the increased awareness of the disease in the community and among physicians, this is still a relatively rare disease. There's only about 17,000 new cases in the US. It's only one percent of all cancers and only ten percent of all blood cancers. And so it's a relatively uncommon disease, and I think there's so much new information out there that even practicing oncologists can't always keep up with the new information. In addition, they should be made aware or least the patient should be made aware of possible trials that are available to them. That's how we've made all the progress in the treatment of this disease, is through clinical trials."
So if this belief exists in the Multiple Myeloma specialist community, then why is there still such a disparity in outcomes? Sorry folks, I can only speculate. Much of this difference must be because of the leading edge knowledge of the myeloma specialists at these exceptional facilitates, and their focus on supportive care. They have a great offense(specialists) and defense(supportive care). Part of it may be that the disease is just so rare that the dissemination of this information would never reach the light of day if not for organizations like the IMF(International Myeloma Foundation). How many people know that March is Multiple Myeloma awareness month? The IMF has been at the forefront of this education process, but unfortunately the National Cancer Institute life expectancy numbers continue to lag those at the best institutions. So if this life saving information is not reaching the myeloma patient community, how can we improve the awareness? In this day of the internet, Facebook and Twitter, I therefore recommend that each of you send this post to your Facebook friends and Twitter followers, just to let them know about Multiple Myeloma and ask them to participate in the Myeloma Awareness Programs (Mambo for Myeloma and Songs For Life). I will almost guarantee that one of the people you send this to will know someone with a myeloma patient in their circle of contacts who could benefit from this information. Because I have found that "Knowledge is power" and "Ignorance can kill!"
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