What information should I know about my myeloma?

[Music] what information should I know about my myeloma the easy answer is you should learn as much as you can if you're newly diagnosed there's so much new terminology it could be overwhelming the information will come over time you will learn the terminology over time you'll learn the names of the drugs over time but I'd encourage you to not be shy about asking questions of your doctors your nurse the experienced patients and the Advocate groups to help you learn more about your myeloma at least learn your specific myeloma markers how does a doctor tell whether or not the treatment is working how does a doctor determine what treatment might work best for you because perhaps your you have markers that are considered high-risk mutations or you don't have those mutations learn your myeloma markers and learn the names and dosages of the drugs that you're taking and just to make it more complex unfortunately there are two drug names for every drug you're taking so good luck with that it will come in time don't be overwhelmed and just don't be afraid to ask questions for myeloma patients at some point for most myeloma patients a treatment will stop working and you want to have an idea what's your next treatment what your next lilypad will be going forward and I think that's those are the things that I think are most important in terms of learning about myeloma your markers the drug names the dosages and maybe next treatment it's important that you know your myeloma because your myeloma is not the same as my myeloma or somebody else's myeloma is a very heterogeneous disease we should say cancers it's plural not singular and the way your myeloma presents can be so different than somebody else who might have the very same lab numbers that you have you you need to know what your bone marrow plasma cell percentage is you need to know your s pet you need to know your M spike and really you should know your kidney status such as your crab knee and if all of these numbers some strange or the terms sound funny to you it's important that you learn these terms myeloma is going to be with you the rest of your life and the more you know about it the more you learn the more you're going to be able to make good treatment decisions it's your cancer it's your job to know your enemy there's several tools available that you can use to to track your information but I think the important thing about health free is not only does it allow you to track your information it provides you with recommendations from some of the best myeloma specialists in the world you know what works best for you that happens to be something that has never existed is sorely lacking and is something that that this and the university of myeloma crud University helped to fill so you need to know all your information as best as you can and you need to know what your current plan of treatment is that you don't necessarily have to have myeloma specialist that you go to every month but at least he's working with your local oncologist to provide you with good and excellent care typically the more myeloma you have the more protein you make and it's critical for you to know your protein you need to know your protein it's a big deal in your monitoring these proteins are actually antibody proteins or immunoglobulin proteins they're proteins and these proteins are made out of two components a light chain and if you don't know light chain you're at a major disadvantage you need the no light chain and a heavy chain and your physicians use that as in direct measures of the activity of your disease and they actually use it to determine the depth of your response your benefit now that's an indirect measure the only direct measure is the bone marrow so you can have two choices you can get your protein your heavy chain and your light chain measured every month well you can have a bone marrow every month show of hands because really what we're interested in is how much myeloma is in the bone marrow but we use the protein measurements as surrogates because the working assumption since the weeds make the protein that the protein levels over time are a good reflection of how many weeds there are so if you're killing the weeds the protein should be dropping if the number of weeds are unchanged the protein should be stable and if the disease is progressing and the protein should rise so it's very typical that every month or whatever you're monitoring interval is you're having a measurement of your life change there are two types Kappa and lambda you should know which one you have because that involved light chain is a big deal for your provider in terms of what is the activity of the disease there's also a heavy chain there are two types typically G and a or IgG and IgA that commonly will also be measured and and it doesn't matter which you have you need to know which you've got because it's key to your overall monitoring over time and there's a third measure that and they're all good measures where you have a s pep and what your doctor will say and leave you bewildered we'll talk about your m spike and the M spike is just another way of measuring the protein it's different from the way in which you measure the heavy chain GA or the light chain Kappa lambda but it is a legitimate measure of the activity of the disease it's the markers what we use to determine how you're doing over time and we use it as a response and it's relatively simple because a lot of these things go back to the 60s if the protein went down 25% we say it's a minor response 50% it's a partial response 90% a very good partial response a hundred percent the complete response and then there's some nuances in there about what is a hundred percent mean and ways to actually dive deeper to find out how really deep the response is but you need to know your myeloma protein when I do my second opinions I see a lot of Engineers I don't know what it is about Rochester Minnesota and engineers that they come and they bring me an Excel spreadsheet that shows a graph of their protein and what treatments they've had a long time and I love them because then the next patient brings me 400 pages of useless material that it's very hard for me to sort through but when I see those protein numbers over time and what the treatments were it helps me immensely and believe me if it helps me it's going to end up helping you so there are many different types of myeloma and some of the people watching may say I don't know what type I have or some of you may know I have a GG Kappa which is the most common type or IgA lambda or free Kappa the reason why it's important to know what type is that the ability for us to get the optimal outcome for everyone lies in knowledge and the power that lies within knowledge my loam is unfortunately a disease of numbers and you'll get all these numbers in your reports from your care team and it's hard to interpret them even for people who are very seasoned at this but if you know what type of myeloma you have be at IgG IgA cap or lambda you can use that information to better understand how you're doing in your treatment course are you doing better are you doing worse are my labs coming up are they going down and this helps us work together as a team from the patient side to the caregiver side to provide the optimal therapy tracking your myeloma markers and treatments can be hard to do especially when you have a mountain of paperwork health treat gives you an easy way to track your myeloma genetics the treatments you have received along with the outcomes of each treatment and myeloma labs with graphs of these values for you so you can see how your disease is changing over time and be more educated and empowered when it comes to your care [Music]