When I ask the question it is more of a shout to the world -- because I feel that many people die sooner than they need to, and I just hate the thought of it! I am just beside myself in understanding why there is such a difference between what is and what could be. That is the reason I started this blog in the first place. The what could be is that many centers have patients who live for an average of 10 years or more, and the average life expectancy for all multiple myeloma patients is just 4 years based on the most recent National Cancer Institute survival data. So why the big gap between the two?
Some of it is understandable, because I have seen patients who have been given just decadron as their only care when I know this is just such a substandard treatment. Then there is the patient who choses to only do holistic treatment. Or the patient who choses no treatment, because his faith will heal him. I, however, also have faith, but that faith is that my doctors will be guided by the hand of God. This was their choice, and I can understand it, but I certainly do not agree with the choices, and unfortunately the outcomes were inevitable. And one reader commented that it is caused by the lack of health insurance, and I agree that this has a an impact. However, only 16.3% of the US population does not have health insurance and the differences 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 submit to you 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 weigh at all in his longevity? Pretty dare good move Mike! Or Barb Hammack another 20-plus year survivor from the myeloma listserve(a patient to patient forum) who's doctor happens to have gone 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, you got me? I can only speculate.
Part of it may just 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 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 the following link to this page: http://myelomasurvival.com/3/post/2012/03/why-do-people-die-from-multiple-myeloma.html to all of your Facebook friends and Twitter followers, just to let them know that it is Multiple Myeloma Awareness Month and that a second opinion with a myeloma specialist could just "SAVE A LIFE". I will almost guarantee that one of the people you send this to will know a Myeloma patient who could benefit from this information. Because I have found that "Knowledge is power" and "Ignorance can kill!"
God bless all who have to be on this journey/ firstname.lastname@example.org