(Guest Lecture): June 2022 - Tracking Your Myeloma Labs in HealthTree Cure Hub

So what are we talking about today? We're gonna be talking about tracking your myeloma labs with Health Tree Cure Hub. At the Health Tree Foundation, we're making it our mission not to wait for a cure. Health Tree Cure Hub is one of the ways that we are making that mission a reality. Today, we're going to learn about how you can become a more informed patient in your care by tracking all of your myeloma labs in one place. And our team's also going to help you understand a little bit about those labs. Here to speak to you about this topic is Patty Patricia Flores. She's an international medical graduate who joined Health Tree in 2020 as a part of the patient experience team. She helps patients understand and track their lab and genetic test results, as well as relevant information from their health history. She loves ballet, traveling, and reading a good science fiction book as often as possible. Andrea Robles is also here. She's an international medical graduate and part of Health Tree's patient navigator staff. She helps complete medical history and patients' important information to help them track their myeloma. She's a wife and mom of three who loves to read and watch movies. And last but not least, we have Anna. She's an engineer and psychotherapist who has experience in both fields and loves them equally. She leads the patient experience team at Health Tree and she's passionate about talking to patients and empowering them. Whenever she's not working, you'll find her exploring the world, eating different kinds of food, hiking or skiing, and she's a new mom to baby Julia, so we're excited for her. With that being said, I'm gonna stop screen sharing and then we'll turn the time over to my team to get started. Hello, everyone. We're super excited to be with you today. This is one of my favorite parts of the yelp, just being with you, sharing what we have so you can take advantage of it. So as Audrey mentioned today, we're gonna explain what your myeloma labs mean and how you can track them on Health Tree and how we can help you accomplish that. So just as a reminder, we're gonna do all the process of logging in to your account or creating a new account if you don't have one. So the first step is to go to healthtree.org and to click on multiple myeloma. Right now we're also supporting AML, which is exciting. And then once you're in multiple myeloma, please click on Cure Hub and then on Cure Hub Sign In. Even if you don't have an account, click there. And once you're in Cure Hub, you'll be able to access your account with your email and password. Or if you don't have an account, just scroll down and you'll find this button that says Create Account and you'll be able to create one. You'll be all set and ready to start tracking your myeloma labs and taking advantage of everything we have. Just as a reminder, what's Health Tree Cure Hub? So Health Tree Cure Hub is a flip platform made by patients for patients. It's a single place to track your myeloma. So sometimes we have all of our medical information in different portals and this way you can have it all in one and you don't get confused and you can see all the myeloma history in one place. And then on Cure Hub, you can find personalized treatment options, clinical trials, find your myeloma tweens, a list of myeloma specialists in your area, forums where you can discuss myeloma topics with other patients, side effects solutions where you can share the solutions that you've tried for your different side effects and also see what other patients have shared. So Audrey is gonna share with you all the recordings that we have sharing all these different features of Health Tree Cure Hub. So you can also take a look at them and take advantage of all the features that we have. Okay, so I'm gonna go ahead and ask Pati to explain what your myeloma labs are. Thank you, Ana. So as Ana already explained, we have multiple features in Health Tree Cure Hub. Today we are going to focus only on the myeloma labs section. So once you go into Health Tree Cure Hub, this is the screen you will see once you go into the labs section. On the top of the screen, you will see your treatments once you have added them. And if you haven't, we can help you do that. We will explain that later. But this is a graphic of how you will be able to compare your treatments with how your labs are responding with each treatment. So this is a great tool for you to be able to see whether you are responding to treatment, whether there is a relapse, you can be able to compare how the trends of your labs are going depending on the treatments that you have. So this is an example of a patient. This is not real. But in this case, we can see that this patient started treatment in around 2009. And we can see the myeloma markers. They were really high in the beginning, right? And as the treatment starts going, we can see that the patient actually responded to treatment, right? Because all the myeloma markers started going down. So this is an example of a way that you can use this tool that we have for you to be able to see whether you're responding to treatment, whether there needs to be any changes, maybe a dosage in the treatment that your physician has set. So it's a very visual way for you to understand your labs without having to know all the lab values numerically. So this is a great tool. And we also have, when you scroll down, we also have the table. So this is where you will be able to edit, add, or delete. If you think some of them are wrong, you will be able to add the numerical values. And of course, if you want to check them as well, or you prefer the format of a table, we also have that. Okay. And before we see how to add your labs in Health Tree Care Hub, it's important to understand what they mean, right? So today we will also talk about that. We have this test. Your physician, you already know that they can take multiple types of samples. And from this sample that they take, they will be able to take the test results from these samples. We can have blood, urine, or bone marrow biopsy, which is very important, as you know, in myeloma. And it's important also to remember why it's important to monitor your labs. And this is a tool that can help you prevent and organ damage and significant disease. When you are tracking your labs, you can see the trends, how they are going, if they are going up, if they are going down, if they are controlled. And by taking this proactive action with your labs, with your health, you'll be able to notice if there are changes that need to be made and prevent this extensive disease. And before we go on and talk about the labs, here's just a reminder that multiple myeloma is a type of cancer of plasma cells. This is important because when there is an excessive production of plasma cells, there will be an excessive production of proteins or other components that are proper of the plasma cells. And these proteins will help us identify whether there is an uncontrolled amount of plasma cells, whether the disease is increasing, whether it is progressing, or if it's controlled. On the next slide, we can see an example of an immunoglobulin, and it is important because these immunoglobulins are produced by the cells that we just talked about. So if we have an increased number of plasma cells, we will also have an increased number of these proteins, which are called immunoglobulins, and it's an indirect way of measuring myeloma. So not all the time, as you know, your physician will take a bone marrow sample and see the plasma cells that are at that moment, because it's not very useful to do it every single time. That is why we have indirect ways of looking at them. And this is an example of them. In the middle section, we can see a green-white part. It looks like a white, it's green. And that is the heavy chain. So that heavy chain is what gives us some of the labs that your physician needs to look at, right? So they are IgG, IgA, IgM, and there can also be D and E, but they are not as common. And the blue chains that are adjacent to that green-white figure, those are the light chains, and they can be kappa or lambda. These are very important because these two chains that we have represented in this picture, they will give you what's your myeloma subtype, right? So you can be IgG lambda, IgG kappa, just to say a few examples. And then here we can see the myeloma labs. When you go to your labs, you will see that in Health Tree, we have divided them with the myeloma markers. And after this, Andrea will talk about the other type of labs. But here we can see the myeloma markers. We call them that because they are directly related to myeloma, right? So these are the ones that tell us how many plasma cells we have. So it's like an indirect way of knowing how is the myeloma progressing, okay? We can see that we have the M protein, that it can be both blood and urine. We have the kappa and the lambda light chains that we already talked about. We also have the ratio, which is just, it's like the relationship taken into account how many kappa light chains you have and how many lambda. And in a normal scenario, in a healthy person, this balance would be, well, the ratio would be balanced, but as the kappa count increases or the lambda count, this relationship is abnormal. So we also have to look at that. Then we have the bone marrow plasma cells, which is what we are going to talk about in the next slide. Okay, so one of the most important lab values that we need to look at is the M spike. In myeloma, one of the antibodies that we talked about, it grows out of control. It's not all the immunoglobulins, depending on your subtype. It's the type of chain or the immunoglobulin that's going higher uncontrollably. This gives us the M spike, which is one of the labs that your physician or that you need to track. This is because this immunoglobulin, it crowds out the other antibodies. Some patients ask, like, if I have a lot of immunoglobulins and they are part of the immune system, shouldn't it be good? You know, like, I should be able to fight infections, right? But this is not the case, because these immunoglobulins that are being overproduced, they are not normal. They don't work properly. And since they are abundantly, they would use also the ability of the other immunoglobulins to work as they should. So just remember that this excess of protein is called the monoclonal protein, and it has a lot of other names, such as M spike, M protein, and we will see other types of names that you can find in your lab values. Then we have, well, this M spike, you can have it in your blood or in the urine. Not every patient will have it in the urine, so it depends on whether your myeloma is affecting your kidneys or not, but usually your doctor will take both the blood sample, the urine sample, and they will try to find whether there is an M spike. So it means that they will try to find if there is this excess of protein in your blood or in your urine. Here we have some of the other names. It's chiroprotein, M protein, M spike, and if you're looking for them in your labs, you will find them under the name serum or urine protein electrophoresis. You will want to look there to find your M spike or in the immunofixation as well. And just as a reminder, for the M spike, just for the M spike, the normal result is always zero. So there's not a range in which you should have an M spike. It should be zero, otherwise it means that there is something going on with myeloma. Then we have the free light chains, which we already talked about. The free light chains are the blue sections that I already mentioned. They are kappa and lambda, and you should know what's your subtype. You should know whether you need to be tracking the kappa or the lambda. And you will know this because it's the one that is increased the most, right? Or you can also ask your physician or we can help you figure that out if you need assistance. And that is how you will know what is your myeloma subtype. And here's just a side note, which is very important because I already mentioned that the M spike is very important and that we need to track that value, right? We need to see if it's controlled, if it's going up, if it's going down. But there are some patients, about 25% of myeloma patients, they will never show an M spike. They only show light chains. So for this specific type of patients, if you are a patient that's only kappa light chain subtype or lambda, you need to be focusing on the light chains because M spike will not be an option for you to track labs. So for this patients, it's specifically more important to look at the light chain values. And with the free light chains in the blood, we can help detect an early relapse. This is because sometimes the M spike, it might seem like it's controlled or like it's normal, or as I mentioned, in the case of patients that are free light chain only subtype, they won't notice an M spike, but we can see if the light chains are slowly creeping up, we can see there's something going on and maybe we need to check whether your physician will do a dose adjustment or change the treatment. Of course, the overall picture needs to be taken into account, but it's one of the clues to know that your myeloma needs some work because it's progressing. We already talked about the light chain ratio. I just added what's the normal ratio, right? So it would be an abnormal if it's above eight or less than 0.1. And this is very important for every patient, but it's more important in patients who have kidney problems when they were diagnosed with myeloma and during the course of the disease, because they usually have higher levels of light chains at baseline, and that makes the ratio be very abnormal. So for this patients, it's very important to also focus on how the ratio is going, and also of course, take into account all of the labs that we're talking about today, but for patients with kidney problems, it's very important to focus on the ratio as well. And the immunoglobulins, well, we already talked about the three light chains, which is the blue section, and the heavy chain, which is the section in the middle. It's what gives you the other part of the subtype, okay? So IgG, IgA, IgM, D and E. And I just added the normal ranges. In this case, you need to be familiar with the ranges because you need to know what is high, right? For each of the immunoglobulins, for you to know whether that specific value needs attention or if it's within the normal range, right? For the M-spec, for example, is easy because we know that it's zero, but for immunoglobulin, it's important to know, just have an idea of the range of your subtype of immunoglobulin, and if not, it's just useful to check the overall trend. Are they going up or are they going down? And of course, really important, we have the plasma cell percentage. This is taken with a bone marrow biopsy. So of course, you know, for the diagnosis, but also for monitoring or restaging, it's very important to have a bone marrow biopsy and check what's the plasma cell percentage in that sample of bone marrow biopsy. And this is very important for us to be able to know whether a patient is M-GOST, smoldering or multiple myeloma, right? So we know that less than 10% of these plasma cells, that's M-GOST, from 10 to 60%, it would be a smoldering myeloma. And both of these, it's important to know, you can have a plasma cell percentage, but if there is already presence of end organ damage, and this means that your myeloma is already affecting your bones, your kidney, your hemoglobin, or you're having already symptoms, it means that it's already active multiple myeloma. So this plasma cell percentage is also just a clue and a piece of the puzzle, but it's important to take into account the whole picture. And we also have the genetic tests, and your doctor uses this bone marrow sample to send it for genetic testing. We also have the option, as you can see here, of adding your myeloma genetics. And if you've seen a result of a genetic test, you'll see that it's very difficult to interpret. So also if you're having issues with understanding your genetic test, the results, or what they mean, we can help you understand that as well. Today we will focus mostly on the lab section, but I just wanted you to know that this bone marrow sample is what they send to see whether there are any chromosomal abnormalities, and that we can also help you understand that if you have any questions. And in this example, you can see, once you add them into Health Trigger Hub, you can also click to see what they mean. So once you know what are your specific chromosomal abnormalities, you can see the definition, what it means clinically, okay? And this is a separate section that we have in Health Trigger Hub. We don't have these high-risk values in the lab section because we only need these values at the moment of diagnosis. These values are the beta-to-microglobulin, the albumin, the LDH, and also the genetic test. This is important because these values at the moment of diagnosis of acute multiple myeloma, they'll give us what's called the RISS stage. The RISS stage is a tool for physicians to understand whether a patient is standard risk or high risk at the moment of diagnosis. These two is useful for prognosis, but it is important to remember and take into account that there are multiple other factors that influence the course of the disease, such as other diseases that the patient has, responses to lines of treatment, the overall fitness status of the patient. So this is a tool to help the physician see the overall picture and, yes, have an idea of the prognosis, but it's not set in stone. So once you figure out your stage, and if you have any questions, you can reach out to us and also talk to your physician about it if you have any concerns. Now we will see how you can find out your stage of diagnosis if you don't already have it or you don't know it. We have this tool for you. This is the dashboard that we have. We will click on diagnosis, as you can see on the screen. Then this is an example of how it would look like. We will click on add new. Here we will find this tool, okay? You won't need to add a new diagnosis, but here you can find this calculator. You click on find my stage here, the blue section that we see right now, and it will open up this calculator. Of course, you will need to know these values, but it's important to remember that it's the values at diagnosis. If you enter other values, they will not be accurate. So for the purpose of this example, I will fill out the calculator of the, yeah, we can see I entered beta-2 microglobulin less than 3.5, bilmin less than 3.5. I added a high risk for the FISH test results and normal LDH. And on the top of the screen, you will see your stage of diagnosis. This is just an example. So if you want to go ahead and do that exercise, you can go to health with your hub and see your RIS-S stage of diagnosis. And also, if you don't know whether your specific test results are high risk or standard risk, we also have this little I button. You can click on that or hover over that blue button, and you will see what are the mutations that are considered high risk. It's deletion 17, translocation 414, and translocation 1416. So if you had one of those at diagnosis, that will be considered high risk. If you don't have those, it would be considered standard risk. Now we'll proceed with Andrea to continue with the last section. Thank you, Patti. Now let's talk about CRAB. This is a very important tool for you because your physician may make decisions regarding your treatment based on whether or not you have symptoms. And this acronym is an easy and practical way to find out. So let's see, the C stands for calcium, and A serum calcium over 11 tells us something's going on. The R stands for renal insufficiency. And as you know, your kidneys are in charge of cleaning waste out of your blood. So an impairment on doing it translates into a low creatinine clearance called EGFR, or a high serum creatinine over two milligrams. Next, the A stands for anemia. And the anemia is diagnosed based on your amoglobin value. And A value less than 10 grams tells us something's wrong too. And last, the B stands for bone lesions. You can either have pain in your bones or lytic lesions. These lesions can be seen on CT scans, PET scans, skeletal surveys made by radiographies. And they can be located in your skull, in your leg bones, or in your chest bones. And moving on to the next slide, here you can see how can you track your graph and your cure-up profile. And it's a very dynamic and graphic way. Notice that when you leave the cursor, the cursor has specific time, it shows you the exact value of your blood test in color blue. And next, we are going to talk about the complete blood count. This is essential because myeloma being a proliferative disorder can produce, as Patty told us, too many and too big myeloma cells or plasma cells. So these cells can crowd out your bone marrow and they leave no space for other cells to grow. So this can lead to several deficiencies in your blood, such as anemia, as we talked before, as low hemoglobin, and then low platelets that are the cells that help your blood clot, can lead to thrombocytopenia, and this can make you bleed easily. And last, the low white blood cells can lead to infections. The white blood cells are called leukocytes, and there are two important ones in your body, the neutrophils and the lymphocytes. Also, you can see in this slide the normal ranges, so you can take them into account when you're checking your labs. And the last exam we're going to talk about is the comprehensive metabolic panel. This is also essential for you because these chemistry panels are on regularly after your treatment to check that your body's normal functions, to check that your body's not functioning normally. And the first value, but it told us before, is the albumin that is a protein in your body, and it's the most abundant one. This is very important for you because it's part of the IRS's staging at the moment of diagnosis. Then the high calcium coming from the bone destruction can result in constipation, loss of appetite, weakness, drowsiness, and confusion. And as we saw in the previous slide, we have two ways to measure your normal kidney function, and these are the serum ketamine and the EGFR, also shown the normal ranges in this slide. Thank you, Andrea, Patti. Well, now you guys know what your labs mean, and because we don't want you just to go there and see, like, what does all these different numbers mean, right? So now that you know what they mean, I'm gonna show you how to add them on CureHub so you can have everything there. So the first thing you have to do is log into your account, as I already explained, and click on Labs, your tracker myeloma, click on Labs. There are different ways how you can add your labs on CureHub, so you can either add them manually. This is a good exercise sometimes. If you're a new patient trying to go to your labs and your exams and looking at them and adding them, it's a good exercise because you notice the numbers, you see the graph, how it changes. So this is more, I would say, like an educational thing to do. But we can also help you. So if you have your PDFs on your computer, or if you have your labs in a paper, you can take a picture and then you can upload them here. So just click on Upload Your Medical Records, and we will get those, and we'll be really happy to add them for you. And you'll get an email once everything has been added. This is a non-automatized process. We get the file and we add them, our experts in labs add them. And once that's done, you'll get an email from us. Once you get that email, you can schedule a call with us if you have questions. If you still don't know what those numbers mean, you're confused, we're all about that. We're all about explaining what your myeloma is, okay? We do not give medical advice, but we want you to go to your doctor empowered to know what you have, what you want, and your questions, your important questions. We don't want you to go to your myeloma specialist with what does this mean? No, more important questions like, what's my next treatment plan and why? So we can help you with all that before. So we can prepare you for that consult. And then there's another cool way to upload your labs, which is automatic. We love that one. It's using Apple Health and Health Tree Connect. So basically, Apple, if you have an iPhone, Apple, you can connect it to your patient portal, and then Apple gets your labs values. And then we have an app of Health Tree, and then Health Tree gets the labs from Apple Health. And then you'll get them in your chart. So that's really cool. You make the connection every time you want your labs, your new labs to get in. If you click here, you'll get all the instructions of how to do it. But don't worry, if you get stuck, we can help you. We're always, always here to help. So you can call us, and we'll be really happy to help you with that process. So that's another cool one. Audrey will be sharing in the follow-up email a list of Apple Health facilities, because Apple Health doesn't support all the facilities in the US, just some of them, and then some Canadian ones, and some other international ones. So you can look at them and see if your facility is supported by Apple Health. And then you can also give consent for Health Tree to enter your labs. So for the consent, if you have any questions as of what you're consenting to, once you click in there, you'll see this button here. And then you can click there and everything will be explained. But still, if you have questions, you can call us and we'll be really happy to explain this section. So once you are good, you can click on Add New Medical Record Connection and we'll connect your labs. So the first thing that you have to do is look for your facility. We can do US facilities and international ones. So if we have some international patients on this webinar, we'll be really happy to do that as well. Sometimes it gets harder. So if you can get them yourself and upload them, that works as well, but we can try to do it for you, for sure. So you click, sorry, you enter your facility, and then you either choose electronic health records and paper records or one or the other. So what does this mean? Electronic record is your patient portal. So like MyChart, My Health Plus, all those portals that your facility has and where they upload your results and all your medical records. So that's your electronic health record. Sometimes that's the best way if you're looking for us to work faster and if you want us to update your information real, like whenever you want. So if you have a consultation with your specialist or you're getting a second opinion, which we really encourage, just not visiting one specialist, but at least two, then you can always call us and say, hey, can you update my information? So we'll go and that's a really fast way to do it. So we can even have it the same day or one, just give us one day and you can have it ready for your doctor. So we really recommend a way it's easier for us, but if you don't have it or that's not your preference, that's okay. You can also do paper records. So what does that mean? Also paper records works more for international patients because sometimes they don't have patient portals. So you can do that as well. Paper records, you basically sign the consent and we send the consent to your facility and then they fax your health records to us and we add all the information. We don't only add your lab values, we add your genetic tests, your treatments, your diagnosis, and everything that we find in your current health. Sometimes if you have like some kidney issues there or anything that we see, we add it to your care hub profile so you can get the best out of our features. So having a validated profile added by us will really bring you the best results. And yeah, so we'll do that. And you can, once your profile has been validated and updated, we will let you know, as I mentioned before, and you can schedule a call with us so we can explain what it means, everything. So it's really cool. So basically it's gonna ask you to, sorry, to add your first name, middle name, last name, maiden name, your street address. That's because the consent asks us to complete that information. So you'll have to add that. You're gonna have to add your signature using your finger or your mouse. So your mouse pad or your mouse and your computer. And then you have to submit the signature and you will be all set for the paper records. And then if you chose to share your patient profile with us as well, you'll enter your username, your password, and the website. So where do you go to see your records? So my chart, Mayo Clinic, whatever, okay? So you click on Save and Continue and you're all set. We'll get that and we'll send you an email as soon as your information is ready. We're working for a lot of patients right now. So if you need us to be fast because you're gonna go to your myeloma specialist, just call us and we'll be really happy to make that faster for you, okay? And then just as a summary, it's really important to know what type of myeloma you have. Keep your labs up to date so you can know how it's behaving. Monitor your labs, especially if myeloma markers, and keep learning. We have multiple resources at Health Tree University that you can go. So we are all about empowering the patient and we love that. And if you need assistance, you can contact our team at support at healthtree.org. Don't worry, Audrey's gonna share that with you as well. And that's our phone number, 800-709-1113. And if you're an international patient and you can't call us for some reason, we can call you. So you can just email us. Or if you go to healthtree.org at your bottom right, you'll find a chat icon. So you can click on that one and just ask us to call you and we'll be really happy to do that. And I think that's it. Awesome, thank you so much. You can tell I have an excellent team who works really hard to make sure that the patient comes first and the caregiver. And we really look forward to having your questions now so that we can answer them and help ease your burden a little bit. So there's a couple of questions already here that we can start off with, guys. The first one is from Linda. She's asking if we could talk a little bit more about risk. She is smoldering myeloma with no treatment. I'm not really sure where to look within our website or CUREhub. I have a couple of thoughts, but let's turn it over to you guys first. I can answer. So for patients with smoldering myeloma, it's different rather than with active multiple myeloma. With active multiple myeloma, they use the RIS-S state system. So if you transition to being active multiple myeloma, your physician will need to look into these high risk values and see the stage. But for assessing risk at smoldering myeloma, there are different tools. We do have some articles that I can send you, but basically the one that most physicians use is the 20 to 20 rule from Mayo Clinic in which it takes into account the N-spike, the free light chain, and the plasma cells. So if the plasma cells, they are more than 20%. If the light chains, they are more than 20 grams per liter. And if the N-spike is higher than two, so that is why it's 20 to 20. If they are higher than this, it would be considered higher risk as opposed to having those lower than those numbers. But this is just one of the tools that they use to assess the risk of progressing from smoldering to multiple myeloma. And it's only one of the tools because we also have genetics. We have some genetic abnormalities that would be considered high risk. So if a patient has some mutations as opposed to no mutations at all while having smoldering myeloma, it would make them higher risk for progressing. But I really want to transmit you that it's really not set in stone. We have had patients that they were high risk and it took a long time for them to transition to multiple myeloma and the other way around as well. They were standard risk and for some multiple factors, they progressed very quickly or they didn't respond to treatment. And it really is important to see the whole picture for each of the patients to be able to talk about with. And it's also important to mention that if you look for like probability of how many years will it take for me to progress, it's still just probability. And it's been taken with multiple studies seeing how patients progressed, but it does not mean that it will happen to you. So I don't know if that answers the question. I'm muted. That's great, Patty, thank you. I wanted to add to that. If you're not being seen by a myeloma specialist and that is somebody who doesn't really focus on other blood cancers, but mostly myeloma and other plasma cell dyscrasias, then I would highly suggest finding one in your area. We can include a myeloma specialist directory in our follow-up email. Even with smoldering myeloma, it's so pertinent that you have somebody that understands the ins and outs of smoldering myeloma, active myeloma treating you. And if you haven't already talked to your treating physician, whether they're a specialist or not, about your level of risk, even as a smoldering myeloma patient, I would do so because it's so important for you to know. And while it might be a little bit, it might be a lot of information for you to take in, it's still very vital that you understand and are taking part in your care, if that's something that you're interested in. So that's a great question. Thank you so much, Linda. Bill has another question. I have all my lab results in an Excel spreadsheet. Can I upload the information from the spreadsheet and not have to reenter? Anna, what do you have to say about that? Hi, Bill. So yes, you can. Right now we do not support the spreadsheets on the website just because we're all about accuracy. So we do kind of like PDFs downloaded from your facility or pictures that you take from your medical records. We can add them for you for sure. You'll have to send us an email. Just know that the preferred way is your medical records because we want it to be accurate. So when, for example, when you're looking for your myeloma tween, we want you to find the right one. And we don't like to have wrong numbers there or have you be confused by your numbers if they're not correct. So for sure we can help you out that, but if you have a PDF of your medical records or a picture or you can sign the consent, that's a preferred way. So we know that that information it's accurate. But yes, you can email it to us at support at healthtree.org. And then I'll have someone from our team contact you so they can follow up with you. Okay. And then Tina wants to know if the lab values will be updated automatically every time you have blood work done. So not now, we're working on a feature that we'll be doing that soon. That's super exciting. But for now we don't have that automatic. You'll have to contact us. So if you have new labs that you would like to see on your health tree, you can just send us an email real fast and talk to us in the chat and we'll be really happy to add those for you, especially if you have any concerns, we'll be really happy to do that for you, Tina. I'll have someone from the team reach out to you as well. Okay. Great. Another question from Thomas is, I already have my provider entered into the Connect Health Records section. What else do I need to do for Health Tree to enter my labs directly from the MyChart web portal? Okay. So that's all. If you don't have them already, I'll take a look at it and then someone will contact you as well. I remember you. So let's see. I'll take care of that. Cool. We'll make a note of that. And please let us know if you see something that's not how it should be or you have questions. I mean, this team's amazing. They have an excellent turnaround time to answer your questions. They go out of their way to make sure that you're satisfied with your experience and that you're happy to answer your questions. Satisfied with your experience with Health Tree Care Hub. So please make sure to reach out to us. Okay. Steve is wondering, he doesn't have a computer. He's wondering, can he do this all from his phone? Yes. It's harder, but yes, you can do it. If you are a US patient, what I will recommend is, well, for any patient, internationalists, we can do it as well. It's signed a consent that will be faster. So you can go to the website, go directly to the consent and ask us, just give consent and we'll take care of everything else. Once it's ready, again, we'll send an email and you'll see everything there and we can explain. So yes, you can definitely do that. We'll be contacting you as well because I would like to help you personally. Okay, Judith? Awesome. Okay. Patient is saying they were diagnosed in 2016. So what is the benefit of Health Tree? And how far back would they have to go if they wanted to enter in their information? I think this is an excellent question. And if you wouldn't mind me just sharing a little bit of the benefits that I see and then give it over to the team. One of the benefits that you can get from participating in Health Tree is that you can get a lot of information from the patient. So if you're a US patient, you can get a lot of information from the patient and then you can get a lot of information from the patient. So I'm going to share a few tips that you can get from participating in Health Tree Cure Hub that we did not talk about today. Actually, there's several, but one of them is the opportunity to participate in myeloma research. Obviously, your data when used in this way will be anonymized. You will never be traced back to your data, will never sell your data. It's not like that. And therefore make conclusions about myeloma questions that they have that further myeloma research. And then with those conclusions, they can partner with myeloma specialists to get answers to questions that myeloma specialists have. And it's really an excellent way to speed up research and get us closer to a cure. In the beginning, I said, the Health Tree Foundation doesn't want to wait for a cure to myeloma. And that's why Health Tree Cure Hub really helps us is when you enter your data and then we take it anonymously and use it to find out or to deduct things that can further myeloma research. That's an excellent reason why you should, how you could benefit, how you could help others through participating in Health Tree Cure Hub. Your benefits include finding a myeloma twin who's like you, personalized treatment options recommended by specialists, personalized clinical trials that you might qualify for, side effect solutions. So if you're struggling with the side effect, being able to find solutions, community forums where you can communicate with others who might be going through the same thing as you. I mean, there's just so many benefits. We've tried to make it beneficial to you as well as have that potential for research. So any other thoughts, you guys? I'm obviously very passionate about the benefits of Health Tree Cure Hub, but any other thoughts? Well, yes. And then, well, two things. One, we can add them for you if that's what you like. And then the other thing is you don't have to add every one of them, just like the important ones. So what would that be? Before starting one treatment and then during treatment, a couple of them, and then after treatment. So you can see the chart of how it's going up and down. And then if you would like also like to get in touch with your tweens, they'll be able at some point to see your labs as well. So that will be really interesting, not your personal information, just to clarify the Tween Machine, we don't share personal information. You're an anonymous patient. And then if you want to chat with your tween and connect with them, you can share that with them. So yes, I would say just the important ones, make sure that you add one set of labs, a year at least, and then before treatment, during treatment, after treatment, that would be the most important. And also, even if you have everything in my chart, Health Tree has the important ones. So sometimes your MyChart will have all these kind of different lab values and on Health Tree, we have important ones. And then we have, it's kind of like really clear, you have your diagnosis, you have the outcomes. So it's really easy for physicians to understand. We're developing a telemedicine portal, and physicians have already tried it and they love it because they can look at your Health Tree profile and it's really clear for them, your MyLoma history. MyLoma story is there at a glance. So that's why I would only add kind of like the important ones. And then as Audrey said, you can take advantage of all their features and help with MyLoma research. Awesome. Hopefully that helped answer some of your questions. Another question here that we'll turn over to Patty. What does it mean if IgA, excuse me, and IgM are below normal range, but IgG is in the normal range? Does transfusions, IVIG transfusions help these? So also Patty, if you can explain the IVIG transfusions for those that aren't familiar with those. Okay. So first, this is very common in patients with multiple MyLoma. Since they have an immunoglobulin that's going higher than the rest of them, it means that it leaves no more space or the plasma cells are tired of producing this immunoglobulin. So the others, the ones that should be balanced with all of the other immunoglobulins, they are rather low. So even when the immunoglobulin is, it goes back to normal, the others could remain low. And yes, IVIG infusions help. What this is, is they have immunoglobulins infused by an IV line to the patient. You would have to check with your physician, of course, but this is considered like a supportive treatment for patients. What the IVIG infusion does, it helps boosts, it helps boost the immune system. So these immunoglobulin levels that were low, so when they are low, it means that the body is going to have difficulty fighting infections. So that is why we should be worried about. These IVIG infusions, they help boost those immunoglobulin level, they go back to normal, and it's just considered a supportive treatment for patients with myeloma. Also, MD Anderson, they had a recent study in which they saw that these IVIG infusions, it helped like the immune system go back to normal, but they also saw that it slowed the progression of myeloma. This is just one study, so it's not like a general rule of thumb, but it's also interesting to know and to take that into consideration. Yeah, awesome, thank you, Patti. So I just learned about this, which is funny, right? Being in, I've been two years now in the myeloma field, but I just learned that immunoglobulin is the same thing as an antibody, like I didn't know that. So for those of you who might not know in the audience, immunoglobulin is synonymous with antibody, which obviously can help fight infection. And I just wrote an, well, it wasn't an excellent article because I wrote it, it was just a good event called infection prevention that talks a little bit more about the IVIG transfusions, about different antibodies in the body. So if you wanna, I'll include that in the follow-up email, but it's also on our website in the infection. Well, actually, I think it's gonna be published today. So keep your eye out for it, it's the infection prevention. Dawn is wondering if you are smaller in high risk, do you still get matched to a myeloma twin through our myeloma twin feature that we have on Health Tree Care Hub? Yes, so you'll still get matched, and then we will match with your diagnosis. And there are a lot of things that you can choose to use for the twin machine or not, like age range, for how many years they've been diagnosed, so if it's been 10 years that they've been smoldering, for example, or if you want to find a female or male twin, so there are a lot of things. And of course, diagnosis is included. Again, if you have questions of how to use a twin machine, I'll still ask my team to reach out to you and just make sure that you were able to use it. If you have questions, we can help you, but yes. Awesome. Another question, this kind of is different than what we're talking about, but a great question that lots of myeloma patients and caregivers share. How are monoclonal antibodies different than the every-shelled shots that are given for pre-COVID protection? This is an interesting question because I hadn't thought about it, but monoclonal protein or monoclonal antibody, it sounds the same like the M-spike that we see in multiple myeloma. So I can see what that is confusing, but the monoclonal protein in myeloma or the M-spike, that is just an abnormal protein or antibody that it's being overproduced. It's not a normal protein. It's related to an excessive amount of plasma cells and it just doesn't work properly. It's a sign that we have an excessive amount of unhealthy cells and it prevents other proteins or immunoglobulins to work properly. Whereas a monoclonal antibody as a treatment, we have many types of monoclonal antibody therapies, so treatments. These monoclonal antibodies, they are made on a lab. They are not naturally in the body. They are made so that they can help attack, they help boost the immune system and it's a common therapy. In this case, you asked for COVID protection and yeah, the EV-shells, those shots they have, MBAs, so monoclonal antibodies, but there are many other types of monoclonal antibodies and a lot of them, they are actually, we have monoclonal antibodies that help for the treatment of multiple myeloma. So monoclonal antibodies, when you see that as a treatment, it's just an antibody that was made in a lab to help your immune system fight one disease. So they don't actively fight the disease, but they help your body attack the disease. That's just the general concept and that's how it works for those shots, the COVID protection. Yeah, and to add to that, it's interesting as well because some patients see increase of M-spike after receiving these EV-shelled or other monoclonal antibody shots and that's not to scare you that your myeloma is all of a sudden increasing, but rather because of that relationship between monoclonal antibodies, that's why you see the slight increase in M-spike after those kind of, in your labs, after those kind of immunoglobulin things. Okay, I think a couple of questions went away, but I wanted to make sure that we got them. So one of the questions was, if you don't have an M-spike and are all legal, secretory or non-secretory high risk, what labs are most important to watch to see if there's a relapse? The reason that I wanted to bring this up is because we have a non-secretory or secretory, however you wanna say it, depends on West and East Coast, but we have a chapter specifically for those who are non-secretory. This includes oligo-secretory, this includes light-chain myeloma, non-secretory, non-secretory myeloma. So if you find yourself falling into one of these categories, which basically means there's no M-spike to track, well, depending, I just listed a lot of different ones, but non-secretory, non-secretory means that there's no M-spike to track, oligo-secretory means there's little to no M-spike to track. So that's why they asked the question, which is a great one. Another, some ways that they, some labs that are tracked the most, there's lots of PET scans, the bone marrow biopsy is what is most commonly used in order to keep track of what's going on with your myeloma. We're going to have an event in June, which I'm really excited about. Dr. James Berenson is coming to speak about tracking non-secretory myeloma through serum BCMA. So that's a blood test instead of doing a bone marrow biopsy, which would be very uncomfortable to do that so often in order to track your myeloma. We're gonna be talking about the possibility of doing just a simple blood draw and then looking at serum BCMA in order to track your myeloma. So just wanted you to know that it's a great question. There's lots of information out there. Steve's wondering one more time, where does he go to start the process with a consent? Sure. Okay, so it all depends if you've already completed some parts of your profile or not. So I'm gonna show you both. If you just created your account and you haven't completed your profile or your diagnosis, that's totally fine. So you'll see this screen and you just have to scroll down and look for connect health records and click on start. You'll see this video of Jenny explaining. I would recommend you to see it. It's really nice. And then kind of like the explanation here you can click here on add new medical record connection. And again, if you have more questions, you can click on what am I consenting to? So you have all the answers. So that's one way. And then the other one is if you've already completed your profile, you'll see these screens instead of the other ones. So you have left nav bar here. So again, you scroll down and you click on medical records. You'll get the same screen. So it's just scroll down again. This is how it will look once you add one and click on add new medical record connection. So that'll be the way to do it. But again, I'll make sure that my team contacts you so they can help you with that process. Awesome. And I'm sorry, we had a Tina with a question. So I will just ask you if you can contact us please because we don't have your first name, last name or email. So you can contact us so we can help you have your labs updated. Yeah, yeah. And that was Tina, right? So Tina, if you could email support at healthtree.org your questions so that we're able to contact you. Awesome. Okay, thank you each of you for your participation today. Super excited to have my team here and that was a great discussion. So thank you for participating in that way. And thank you to our audience as well for your excellent questions and for helping this be a really productive session. Now you can join us in August as we discuss the My ALMA Coach Program and how you can find personalized support one-to-one through the Coach Program. That's gonna be on the 10th at 1 p.m. Eastern. You may be interested in other My ALMA community events that we have coming up. Wednesday, June 8th is at 7 p.m. Eastern. Is there a STEM? Oh, that's today. I don't know what universe I'm living in that we're not in June, but apparently we're in June already. STEM cell transplant chapter, the role of allogenic transplants in my ALMA with Dr. Farrell. So you hear about autologous stem cell transplants quite often in my ALMA. Does allogeneic transplants have a role in my ALMA? And if so, what is that role? We're gonna talk about that tonight. And then the ninth at 6.30 p.m. Eastern is our Northeast My ALMA crowd community chapter. We're gonna be talking about the PROMIS and P-CRUD studies with Dana Farber's staff. This is a great way for you and your family to get involved in my ALMA research in a really basic level. The PROMIS study is for those who have precursor conditions as well as, or your family who, if you, excuse me. The PROMIS study is for your family. If you are a My ALMA patient, the P-CRUD is for those with precursor conditions. The 14th at 1.00 p.m. is our newly diagnosed chapter. We're gonna be talking a little bit more about risk status in multiple my ALMA, understanding FISH and understanding chromosomes. I'd like to sign up for any of those events and even more events I have not mentioned today is found at the bottom of the slide and will be included in our follow-up email. As always, I'd like to thank our sponsors without whom this is not possible, Bristol Myron Squibb, GSK, Genentech, Janssen Oncology and Abbe. And again, a big thank you to each of you for helping us build this community. We appreciate you and hope that you have a great rest of your day. Thank you all.