BETA What are some tips on how to best navigate your care and bridge gaps?

What are some tips on how to best navigate your myeloma care? So again, one thing that we've noticed that especially the people of ethnicity is sometimes they don't want to engage their families, that they want to keep having cancer a secret, that they want to really bring in, you know, they are matriarchs of their family and they don't want to have their family worry about because they're in charge. Bring in your family, bring in your family. So when we see patients, I make sure that we that we ask, you know, bring a family member with you, have another person available to have another set of ears to say when we talk about all these very complex things in myeloma that you have someone that's taking notes for you that can repeat it. Ask your doctor to write down things, ask your doctor to record conversations because myeloma care these days is again, a lot of terms, a lot of complexity to it and it's very difficult to engage all that at once. And so just be absent, you know, bring, ask questions, but write down your questions ahead of time. And I would say also that, you know, don't be hard on yourself. I never, what I tell my patients is that by in three months, you'll know everything that I know about myeloma. The trick is that you won't know it the first day. You won't know it the second day. You may not know it the first month. Don't expect to learn everything about this disease in one week or in three weeks. If you're still dealing with the diagnosis or still dealing with that, the disease is relapse. Give yourself some grace and take your time and learning about the terminology. I think patients get frustrated where they say they're talking about VGPR, CR and talking about chromosome 1114. It's too much. Yeah. Give yourself some grace. If you take your time and understanding it and then it will come to you. African-American patients especially need to be aware of the fact that they're more likely to develop multiple myeloma, two times more likely to do so than, you know, other populations. But also they may develop the precursor condition at a younger age as well. And so that's really, really important because as I mentioned earlier, the effects of myeloma can be debilitating. And so knowing this, you can advocate for yourself. If you know that multiple myeloma exists more commonly in your population and you go to your doctor and you get your normal routine checkup and there's something that's not the same on the blood work, for example, ask, ask questions, look into things. Now we're in the information age. There's a lot of information out there. There's a lot of patient resources. There's a lot of sites where, you know, that are reputable and you can talk to folks or learn more, watch videos online. So there's a lot of ways to get information regarding multiple myeloma and understanding what it is and how it could be affecting you as a patient. And I think that even more so, you know, just being diligent, not trying to hide from the information, but actually being curious, you know, get your reports back from your doctor, find out what it means. And if there's something that's not fully understood, you know, try to look into it further. I think any patient should try to do that because that way you're understanding what's happening inside your own body and you're understanding better what you can do. You know, you're doing something actionable to improve your own health. It's hard to understand where to start. If you, if this is something that's coming at you sideways, which is what I tend to tell my patients, it's coming at you sideways. So you have to think about absorbing the information in a palatable way. You can't absorb it all at once. Right. So that may mean just maybe making your own notes. Everybody kind of absorbs information in different ways. If you're a reader, read about it. If you are somebody who learns better from videos, maybe, you know, watch a five minute video about it on one of these, you know, sites that would be giving some information so that at least you understand maybe one or two things about it and then give it time. You know, everything's not going to be understood in one day or two days or a week or two weeks. Give it time to absorb the information and understand. And in terms of trusting your provider, I think in general, it's hard to trust your provider if you feel like you're not partnering with that person in your health care journey. And so if you feel as if information is coming at you, but you're not sure if it's because you're being talked at rather than having a conversation, which is a back and forth, then pause. Take a moment of pause and highlight to your provider. You know, your provider may not even know that that's how you feel. So say, you know, can we pause here? I don't quite understand that. Or, you know, just say, I think this is enough information right now. Can you give me resources that I can, you know, kind of review on my own time? And then the other thing is you do need a myeloma specialist. I mean, this is a complicated disease. It is not a disease that is just, you know, one straightforward answer. It's a very complicated disease. It's heterogeneous in terms of how it presents in individuals, you know, how it affects the body and it can recur. And so these are all the mutations that occur in this is different from person to person and the aggressiveness of the disease is different. So all of these things are important areas to look into and to think about as a patient. You aren't going to necessarily find all that information in one get-go. You kind of have to take it step by step. If you're not getting all the information you need from your local provider, think about reaching out or asking your local provider for connecting and collaborating with a myeloma specialist so that you're getting the optimal treatment in your care because it will change over time. Hi, I'm Valerie Traynham, a Black Myeloma Health Community Outreach Manager with the Health Trade Foundation. What are some tips that patients can use to navigate their care and bridge the disparities gap? Patients can take the time to educate themselves about myeloma. I always say Dr. Google is suitable for many things, but there are some... Take time to educate yourself about myeloma. Dr. Google is suitable for many things, but there are more reliable places providing the latest and most up-to-date information on multiple myeloma. Health Tree University is a great place to start. It has all the information you need to be in charge of your care. Get informed and navigate your disease with confidence. Take disease courses from hundreds of experts and empower your patient knowledge. You can binge watch or take it slow. Another thing you can do is don't settle for being dismissed by your care team. You can come to appointments with a list of prepared questions, record your symptoms and concerns before your visit, and be clear and concise when explaining them to your health care team. You can ask for clarification if you don't understand something. Try to use statements that have I to express your feelings or concerns. For example, I feel unheard or I am concerned about this pain that I'm experiencing. You can also have a support person. The second set of ears is helpful and often hear things differently than what you do. Take notes. If you're going to an appointment by yourself, ask the care person if the record... If you could... There, there, there. Yeah. Have a support person. The second set of ears is helpful and often can hear things differently than what you do. Take notes. Ask if the conversation can be recorded. You can also consider a Myeloma coach. If you face a language or cultural barrier, seek... Start back at if. If you face language or cultural barriers, when possible, seek providers that look like you. Keep records. You can utilize CureHub to track your myeloma by adding information from different hospitals and information that only you know. You can find personalized treatment options, clinical trials, find your myeloma twin, and a listing of myeloma specialists as well.