BETA - What is a myeloma specialist, why do I need one, and how do I find one?

[Music] what is a myeloma specialist so myeloma specialist is a hematologist oncologist who primarily sees myeloma patients in the clinic let's say at least a hundred or more per year additionally he or she presumably attends myeloma conferences and they well be involved in myeloma research studies a multiple myeloma specialist is someone who treats myeloma exclusively so this is someone who's treating probably hundreds of patients and who's been treating it for quite some time why is it important to see a myeloma specialist it's important for patients to get a second opinion from these myeloma specialists treatment options vary so that specialist becomes part of your medical team and is able to work with your local oncologists so you have go to a local doctor he sends you a local oncologist local oncologist sees maybe one maybe two myeloma patients in a year's time and as a result he really doesn't have the expertise you know for example if you go to a place like MD Anderson Dana Farber you know Levine Cancer Institute or UAMS what you're gonna find is they have thousands of patients that they're dealing with and anything that can go wrong they've seen and they've been able to resolve those issues so there are performance which I found based on some of the information that I've learned is that in the first two years about twenty five percent of patients don't survive but if you go to one of these larger institutions that's down to five or ten percent or twice as good or four times as good a survival rate in early diagnosed patients it's important to use in myeloma specialist the University of North Carolina did a study that showed that if you see a myeloma specialist in the first year of your treatment you will actually live 39 percent longer the Mayo Clinic also did a study they bro the facilities in two quartiles of how many patients they treated and they found that you could double the survival if you went to an academic center that treated more myeloma patients so it's really really critical that you have a myeloma specialist on your team they are typically also doing academic research they're attending meetings like the American Society of Hematology which is the Asch meeting the big hematology meeting one of the myeloma specialists dr. olla langran said in myeloma you used to be able to go do updates every two years or something at important meetings he said that's no longer the case and he said even six-month increments are not enough so they're going to ask oh they're going to ash they're going to European meetings there there are probably over ten meetings that could be attended for myeloma for the experts to go to on an annual basis to keep up with the disease and they do that and they are treating their patients too so they're seeing this nice balance of what's actually happening in the clinic and what's happening in academic research and they're putting that together for their patients it's very common for myeloma patient to go to an academic center especially when they're making a decision and get the testing the deeper dive testing especially on genetics or some of those types of reports that need to be run so that patients have all the information that they need to help you make treatment decisions I think every patient should have a myeloma specialist to interpret the data and to carry out the monitoring and to order the tests I think it's important that that's done by a myeloma specialist who can give the optimum advice I don't think all patients should be with a myeloma specialist all of the time but you need a myeloma specialist on your team how do I find a myeloma specialist there are a number of ways to find specialist myeloma crowd has a wonderful listing of specialists by geography the International myeloma Foundation MMRF LLS you can call any one of those and they can provide you with myeloma specialists in your area patient advocates like myself can certainly let you know of myeloma specialists that are available the good news today I'm like when I was diagnosed 24 years ago is that there seems to be myeloma specialists available in any large city and I think it's really important for patients to take advantage of that so as to be able to make that myeloma specialist part of their treatment in health tree we also have a directory of myeloma specialists so you can see where they are and who's at which facility by region when you enter your zip code and health tree it'll show you the closest myeloma academic center near you so you can see which doctors you're near you but sometimes you might have relatives that live across the country or live in the next state that you could go to and you could find a specialist that's close to you and then you can go home and you can get your care locally at home as well so that's a nice balance that a lot of patients yes was diagnosed with myeloma in 2016 and I started reading a lot about it and studying and trying to learn as much as I could and one of the things that I learned right away he was recommendation was finding myeloma specialist and it would just seem to be the common theme that I ran across you know all the time was you got to get a specialist to get you the specialist well and searching for a specialist or the nearest one I think was Houston and there's the you know geographical challenge and travel challenge and all that I was at even remission at the time I've gone through the stem cell transplant was on the maintenance therapy and all that I knew that the bench that I needed to you know really look at finding a specialist because this disease doesn't go away it was earlier this year I learned that the myeloma crowd bounce heard and developed the health treatment website where myeloma patients can go in there and you know go into the website and put in their information which is what I did and the same message came up in that registering in that website was you know you'll do better if you have a specialist and oh by the way here are some choices and one of those choices was here in Austin dr. Matsui had recently relocated there to Austin and it was just like you know spot-on it was timing the man was here in Austin and I didn't have to go through the challenges of you know travel and I knew that and I'm just so thankful that that it worked out that way and since you know discovered documents and you know connected and they've had a few appointments where they just couldn't have worked out any better so it's a great thing to find out myeloma specialists go to the get myeloma help tile in health tree and click find myeloma expert here you'll see a full directory of all the myeloma specialists in the United States by region and facility with information about how long they've treated in myeloma and how many patients they see per year [Music]