(Guest Lecture): October 2022 - Managing Side Effects of MGUS/Smoldering Myeloma Patients

Today's topic is managing side effects of MGUS or smoldering myeloma patients. Although most of you are not on therapy, some might be, lots of you are still experiencing side effects like fatigue, bone pain, neuropathy, constipation. In my search for a medical speaker for this topic, and trust me, I tried, I reached out to several different medical professionals asking if they would be willing to speak. All of them came back and said, there's just not enough research in the field to understand. Right now, we know that there is a subset of MGUS patients, or even smoldering myeloma patients, that are experiencing side effects. When it's MGUS, they change it to monoclonal gammopathy of clinical significance, so MGCS. However, they don't really understand a lot about MGCS, which MGUS patients are experiencing these side effects, why, what is this category, what do we know about this category. There's just not enough research. Then when it comes to smoldering myeloma, or even MGUS, when you're experiencing these symptoms, is it because of the disease? Is it because of a different underlying comorbidity that might be existing in your body and just not know about? It gets so complicated that medical professionals like to see precursor myeloma patients on a case-by-case basis to try to figure out if the side effects are coming from the disease itself or some underlying unknown cause. With all of that said, that is why no medical professional was willing to come give a general webinar is because they all said, please make sure anybody who's feeling these side effects gets seen by a myeloma specialist. Even if you have precursor myeloma, go see a myeloma specialist. I said, okay, that's great, but I really want answers for our population because telling you to go see a doctor doesn't solve your side effect. That's why I invited Todd to come and speak to us. Todd worked really hard with his team to create a product called Patient Solutions in which patients, even precursor patients, can find solutions to their side effects. Now, if you are on treatment, you can find solutions to treatment side effects or disease side effects, which is what we're going to be focusing on today. Even if we don't know where your side effects are coming from, hopefully these solutions that have been crowdsourced and voted on will provide solutions to what you are experiencing. So that is what I wanted to talk about to you today. And remember, I'm encouraging you, if you are a precursor myeloma patient experiencing side effects, to please go see your doctor as well. Go see a myeloma specialist to let them know that you are experiencing these things so that they can get to understand the problem and help you solve the problem a little bit better. As I mentioned, Todd Foster's here to talk with us today. He is the head of product at the Health Tree Foundation. He's an IT healthcare executive who specializes in patient experience and clinical process improvements. Todd was the director of patient and provider experience at MD Anderson, which is a prestigious medical center in Texas for over a decade. Prior experience includes leadership of IT development projects at Intermountain Healthcare and United Healthcare. Todd has a passion for using technology that can help patients have a better life and along the way help to further research for a cure. So that is Todd and we're excited to hear from him today. And the time is now yours. All right. Thank you, Audrey and welcome everybody. It's great to be here with you. I'm going to share my screen. So a little bit before we get into side effects and solutions, why did we create this tool? We have our Facebook groups and lots of social media groups and easily a majority of the questions coming in, like 80% or more of the questions coming in or the conversations people were having were about side effects. And in your Facebook feeds, somebody can make a comment, you can comment. And by the next day, there's been so many other comments you can never get back to what you might have found helpful or beneficial and wanted to look at again. It can be very hard to do that in social media. So that was one reason why we created this tool, this patient solutions tool. Another reason Audrey kind of alluded to is when she said you should go to your, my love of specialists if you are having side effects or experiencing side effects. We heard from lots of patients and physicians that they don't really, they're not really set up to understand side effects that well. If you explain that you're having a side effect, generally they will put it in their electronic systems and document it. But again, it's not in a way that their electronic systems aren't set up to help them easily understand side effects and what people are doing for side effects. So generally you can tell your doctor you're having side effects. And in most, in a lot of cases, if it's something that a lot of patients have talked about, the doctors will ask, what are you doing? And just kind of information flows that way through word of mouth, nothing real concrete or beneficial in that sense. So that was our main reason why we decided to create a tool where we can show side effects and patients can tell us what they're doing to try to alleviate those side effects and if they're working or not. So I'm going to run through a quick demo of the patient solutions tool. It's inside of our Health Tree Cure Hub application. And you get to it over here on the left-hand side under patient solutions. And we have a list of, I think last I checked about 112 side effects. There's quite a few of them that we have. And these are side effects that patients have reported to us. And you can go into any side effect that you're experiencing. If you are on a medication, you can click on the filter and select the medication that you might be taking. And you can select multiple medications and it will show you the side effects that patients have reported specifically for those medications. But for today, I'm going to unselect those and we're just going to talk in general about all side effects. So you can see the side, look for the side effect that you're experiencing. If you click on that side effect, it will take you in to where you can see the data behind these side effects that people are experiencing. You can see for aggression and mood changes, there's 14 solutions that patients have provided. They're all listed here. You can see this one is exercise regularly. And 34 patients have reviewed this side effect and said the exercise helped in 97% of the cases. 3% did not notice any change and 0% did not feel any worse from exercise. Lots of different solutions in here that patients are giving. You can sort by most common. So this had the most reviews. You can just get an alphabetical list if you want or the most successful. So which one had the highest success rate for that solution. So let's go, that's a quick overview of the tool. Hopefully that helps you understand a little bit about what it's about and how it works. And Audrey was telling me that some of the main side effects that you all are experiencing is neuropathy, fatigue and constipation. And ironically, those are the most popular side effects even with a myeloma diagnosis. So I'm gonna scroll down here. Let's start with neuropathy down to the ends. Neuropathy, numbness, pain or tingling in arms or legs. So if we click on that, like I said, this was a popular one. So we have 76 solutions that patients have provided for neuropathy. That's a lot to go through. So again, you can use this sorting here if you wanna kind of sort through. Similar to fatigue or no, that was the mood that I went into your mood changes, but exercise to help maintain good blood flow to the hands and feet. That's the most reviewed solution, 106 patients. And again, 85% of them said it was successful. 15% did not notice a difference. You can also sort here the list down. So are there some over-the-counter medications that might help? There's one that a patient has entered and three patients have said they've tried it. Arnica gel, I'm not really sure what that is, but it had some success with about a third of the patients. So one out of these three, two out of the three did not notice any effect at all. We can go into other remedies. So compression socks, TENS unit or other nerve stimulators, cold laser therapy, pillow top bath mat, lots of different types of solutions here that patients are reporting on. Oh, sorry, let me zoom my screen back in or out. And again, you can see all the data behind what patients are experiencing. So compression socks, about half the patients said it helped. And then a fourth said there was no change and a fourth said they were feeling worse. You can go into beverages and foods, apple cider vinegar. Doesn't look like it's very successful. Didn't make it worse, but didn't help improve it. Self-management, drinking plenty of water, exercise, the type of shoes you wear, lots of different things in here. Are there supplements? So there are supplements that people are trying. Looks like the results are not incredibly positive. It seems that they're helping some patients, but probably majority are not noticing any effects due to the supplements. And it looks like there's quite a few there and they're all fairly consistent. The majority are saying it did not help with their side effect that they were feeling. Tonic water looks to be like the closest one that had a better success rate than no help at all. So I don't know, let's see. There is a question. So is this webinar going to be about the Health Tree platform? It is about... Paul, I'll answer that. Okay. So as we advertised on the website, and as I explained in the very beginning, medical professionals are not willing to speak to this subject and I wasn't comfortable just letting there not be a webinar trying to help you solve your solutions. So we're not trying to promote Health Tree and say Health Tree is the best. We're trying to actually provide solutions for people that are experiencing side effects. And these are real patient proven solutions or solutions that you can see aren't effective and therefore you don't have to waste your time and money. So just to be clear, it was advertised that it was going to be this on the website. And I'm confident that this can benefit patients to the best of our ability. Unfortunately, there's not medical professionals that are willing to speak to this subject. So you can keep going, Todd, but I just wanted to put that in. Thanks. No, I appreciate that. Yeah, that was a great answer. And hopefully that changes over time. Hopefully the medical professionals kind of get a better feel for some of this and we'll begin to feel more comfortable talking about it. I completely agree. I hope in a year or so there's just better understanding about monoclonal gammopathy of clinical significance, about why smoldering patients are experiencing side effects. But unfortunately we're just not that far in the research. So thanks. Right, yeah. And for this group, where I mean, some of you, like Audrey said, may be in treatment. I'm assuming most of you are not in treatment. But if you are experiencing side effects, again, it's hard to determine where the side effects are coming from. It's the cause of the side effect. But the solutions that people are using, what I'm showing you is what we call crowdsourced solutions and they are helping some people. And that's what we're trying to present to you is what people are trying and showing you the numbers, basically, letting you see the data behind what people are trying. How many tried it? Did it work? Did it not work? Did it make things worse? Like for Gabapentin, you can see on neuropathy for 6% of the 101 patients who reviewed this, they felt like it actually didn't improve or help but it made their situation even worse. So this is the type of data we're trying to get into your hands because it isn't available anywhere else. Again, like I said at the beginning, 80% of our comments in our Facebook groups were about side effects. And there's nothing substantial there. It's hard to keep a tally in Facebook of, oh, 25 patients said this worked. Or it's just impossible to try to keep track of that. So we tried to create a tool where you could. And I don't know what's easiest for you all if you have specific questions or wanna talk about specific solutions for neuropathy, we can. I did wanna go into fatigue and constipation a little bit and show you some of those. So let's find the fatigue one. There it is. Fatigue, we have 29 solutions that patients have provided feedback on. Obviously, if you're tired, take a nap, the common sense, right? Apparently, some of them are still tired after their nap. And I think I feel that way most days myself. So don't know, you can see if that's helpful or not. Exercise can help. 92% found that exercise helped. Again, sometimes with myeloma, and you need to be careful on the exercises that you do so that you don't injure yourself. Maintaining a regular sleep schedule. I think this one's interesting. It's be flexible about what you want to accomplish in a day. That can definitely tire you when you feel like you wanted to accomplish these eight things, but you've only done four of them. That mental fatigue plays a part in that as well. And that has a high percentage of success from 65 of the patients that try to focus on what you want to accomplish. Taking medications at bedtime. An interesting one, some patients with myeloma that have the myeloma diagnosis, about a third of them have found that that is helpful to take medications at bedtime instead of in the morning or afternoon. Staying hydrated, eating plenty of fruits and vegetables. Be trying to be as healthy as possible. About half found an improvement doing that. Adjust your expectations. That goes along with the be flexible on what you want to accomplish each day. So adjust your expectations. It's okay to ask for help if you need help. You don't have to feel like you have to do everything. Again, as a fairly high success rate. Enjoying activities that you enjoy is another one with a high success rate. Taking several short walks a day. Some of these seem very simple. Not revolutionary or groundbreaking solutions, but they may not be things that we think about every day. We just think how tired we feel. So maybe pick a couple of these. It's hard to focus on 29 different things at the same time, but look through these and see ones that look like they have a good success rate and ones that you feel like you could accomplish and focus on a couple of those to see if that helps or if it benefits you with how you're feeling with your energy levels. And maybe after focusing on a couple over time, you can start adding a few more to that. And hopefully that's something that will help you. Paul, there was a question if you don't mind me interrupting. So Lisa was saying, don't most oncologists and M.M. specialists tell you to get off all supplements when you begin treatment? And if so, these won't be allowed. And I think she brings up a great point. There are certainly some supplements that myeloma specialists say don't use because it could interfere with your treatment. There are other myeloma specialists that have different opinions. This is where it gets really complicated. It depends on who you are, how far along your disease is, what treatments are you on, what is your doctor's personal opinion. But we do have a disclaimer all throughout the website that does say, please talk to your physician, before starting anything new or stopping anything that you're already doing, because significant changes like that should be discussed with your treating team. So just wanted to jump in and answer that. Keep your guys' questions coming as Todd continues to present. Yeah, absolutely. Yeah, one of the common things a lot of people do is reduce their medication, reduce the dose. Some do it temporarily. I was talking with actually someone today that was on Revlimed, a high dose, and had no complications. And the doctor lowered the dose, and she got a rash all over her body with a lower dose. So then she stopped it for a period of time at her doctor's advice. And then when her doctor said, let's try it, started again, she started up again. And for whatever reason, she did not have that type of reaction. So again, don't reduce your medication or your dose without talking with your doctor. But a lot of times that's a common thing they will do. And they'll keep an eye on everything to make sure you're not having any negative results from that reduction in medication or dose. But something about that helps a lot of people, maybe their body adjusts somehow. When you start taking it again, it's able to handle it and handle some of the side effects, experience from the medications. Sorry to interrupt. No problem. Someone's saying that when they select diarrhea, they get an error message. Do you mind trying that really quickly? Yeah, I saw that. It should, where it doesn't, I know there are solutions in there. There are 28 solutions for diarrhea. Maybe I can talk with that person offline. I'll have them, yeah, I'll have them contact you. Okay, because yeah, it should be working. I can't remember what it, they said there was an error 500. I can't remember exactly what that error means, but we can look into that. But no, it should load for you. There should be solutions there. We've got 28 solutions for diarrhea that people have given us. Obviously, a Monium AD is a common one. And most people are finding success with that. Probiotics are somewhat helpful. Prevalite, that's a prescription that looks like it's been fairly helpful for a lot of people, 89%. The brat diet, rice, eating rice. A lot of these are prescriptions, different types of prescriptions to help with diarrhea. And I like to, sorry for him. I like to do the notes, you know, because on that, if you wanna scroll up, sorry, the notes you're able to provide even more insight. For example, it says for the Prevalite, it says don't get the light version. It has sugar alcohol that can make the diarrhea worse. I mean, this is why we do, this is why we've created this tool. This person has been through this. They are willing to share their experience with others so that you don't have to go through the same thing. So that's something that I like about this tool. Yeah, thanks Audrey. Yeah, if we get specific information, we don't always have specific, but if we do, we always put it in the notes. And yeah, I'm not sure those of you, if you're familiar with sugar alcohol, it does not affect your blood sugar. So a lot of diabetics will, it'll be in a lot of sugar-free type of foods. But if you get very much sugar alcohol in foods that you eat, it does cause diarrhea. So that, yeah, great thing to point out Audrey, thanks. A lot of, like I was saying, most of the, a lot of these things are different types of prescriptions. Obviously fiber, fruits and vegetables. You could argue that that would make it worse. Apparently 90% of the patients are saying fruits and vegetables. So we'll just 10 that tried that said that it helped with the diarrhea. So that, yeah, so that's the area, that's what we have for diarrhea. I can keep going over some of these, or I don't know if people want to talk about some things they've tried. Do you wanna go over constipation and then we could open it up for more? Oh, I'm sorry, that's right. That was another one. I mixed up the diarrhea and constipation. Let's go there. Okay, so we have 45 types of solution for constipation. Miralax or coffee. Surprisingly, I didn't know this until recently, but coffee can help with constipation. And there are people that drink coffee solely for that benefit. I did not realize that. Prunes you hear about all the time, but that's one of the most popular for this. It had about a 75% success rate in helping with that. Over the counter meds, exercise, some more over the counter meds there that can help with that. Fruits, green vegetables, cooked oatmeal. That one, there's 17 patients, but about 60% said it seemed to help. Again, some supplements. Magnesium can definitely help with constipation. It also can be somewhat of a muscle relaxer. So some people take it to help them sleep at nights. And I've heard from a lot of people that, if they take too much, they definitely are not constipated anymore. Yeah, always get your doctor's approval as it says in those notes. For a correct dose. Yeah, you definitely need to know the dose on some of these things. So yeah, talk to your doctor. But again, that's at a high success rate. For the patients that have tried that, these two are types of fiber, drinking lots of water, applesauce, Activa yogurt, probiotics, cyanote, butternut squash. It's getting time for dinner and that sounds really good. So one of the attendees asked a question if they misunderstood this presentation is there's a lot of discussion about treatment. You're correct that MGUS and most moldering patients except high risk are not on treatment. We're trying to go over side effects that I've seen quite frequently in our Facebook group and our other discussions with precursor patients. Lots of them have discussed neuropathy, fatigue, constipation, even diarrhea and are unsure whether or not these are related to their precursor disease. So that's why we're going over it. And I know some people did have questions about like supplements and if they interfere with treatment. These are good things I think to keep in mind even if you aren't on treatment currently and might have treatment in the future. And some of you may be on treatment. So that's why treatment is brought up a little bit in this discussion, but we are trying to show you and focus on side effects that are happening to people who are not currently on treatment but still experiencing these things and are a bit puzzled about why. And unfortunately we can't answer the why but we can try to help you find some solutions to those side effects. And then Tammy back to the Prevalite that we were talking about. She's thinking that the Prevalite is actually the light and Questran is the one that doesn't include the sugar alcohol. So make sure to have those kinds of conversations with your doctors too. And unfortunately they might not know. So crowdsourcing is a good idea as well. What was your experience on this? Things like that. And then also checking with Dr. Amiralax. I mean, definitely I will say again, there's disclaimers on the website. We definitely want you to be aware that we're not promoting any of these things. We're not saying do these and your side effects, your solutions to your side effects are gonna be perfect. We're more saying these are options that have been used. You can look at their efficacy and then have a conversation with your doctor about whether or not this would be right for you. So just wanted to make that clear as well. Somebody's asking if needed to start treatment, is Revlimid the standard treatment to begin with? That's an excellent question. What I can tell you is that if you are diagnosed with active multiple myeloma, the standard of care is usually something like Revlimid, Velcade, dexamethasone or Kyprolis, Velcade, dexamethasone or Cybor-D, which is a different combination. We have had discussions with high risks smoldering multiple myeloma. We've had some experts come and speak about what clinical trials there are for high risks smoldering myeloma or even what treatments are available for high risk. So I will include those recordings in our follow-up emails so that if you're interested in watching any of those, you can tune into those and hear what they have to say regarding treatment. Because it's a good question and it's something that's on the mind, I think of all precursor patients. What will happen if that day comes for me that I progress to active myeloma? So good question. Yeah, great question. And I think I would add to that, again, this is getting more into the treatment side of things, but the most important thing you can do is have a myeloma specialist. And when that time comes, you should be going to a specialist just for various reasons, depending on the type of myeloma, you have different drugs work differently. And so you need to know that and myeloma specialist should know that. And you can take, sometimes some drugs can make it so you're ineligible for other drugs later on, all that kind of information, a myeloma specialist would know. So make sure you have a myeloma specialist handy when the time comes. And thank you, Tammy, for the, I think it was questering. We'll check into that and add that to the side effect when we talked about the blood sugar and make that more obvious of which one is the better one to take that doesn't have the sugar alcohol in it. Yeah, and I'll just say really fast, sorry that we're bouncing off each other here, but when I did ask medical professionals, several doctors and a nurse to come speak on this subject and they all said no, they all did say if precursor patients are experiencing side effects and aren't sure what is the cause of those side effects, they should be seen by a specialist. So even if you don't feel that you're ready for treatment, you're not high risk smoldering, you're MGUS, but you're experiencing things like neuropathy, excessive fatigue, diarrhea, constipation, and you don't know where it's coming from, I think that is key, like a warning sign, a red flag of not trying to scare you, but be seen by a myeloma specialist so that they can be monitoring you regularly and help you in figuring out where these are coming from. So I think that's a good point, Todd, and I think even now people should be looking for a myeloma specialist just to have in their corner as a precursor patient, even if they aren't on treatment yet. And do you wanna address Ida's question or do you want me to? Yeah, I can and then you can add anything else. It's a great question. Ida's wondering how can we be sure our oncologist is a myeloma specialist? One easy way could be visiting the Health Tree website. We have a myeloma specialist directory. You can see if your oncologist is on there. Another easy way is by simply asking them, do you see over 100 patients per year? If you're in a rural area, it's gonna be more around 50 myeloma patients per year, specifically multiple myelomas. So asking your oncologist, how many multiple myeloma patients do you see a year? You'll want that number to be at least in the 50 to 100 range to know that they're specialists. And then do you participate in myeloma research? So are you in clinical trials? Are you studying myeloma? Are you on the research side of myeloma? Because those two things together, seeing at least 50 to 100 and then also having them participate in myeloma research, qualifies them as a myeloma specialist. That's not to say you can't see your oncologist anymore. Your oncologist and the myeloma specialist should work together to give you the best care. But myeloma is constantly changing. And what we know about MGUS and smoldering myeloma is constantly changing, which is wonderful, that research is being done in these fields. But it's impossible, impossible for an oncologist who's seen a variety of blood cancer patients to stay on top of everything that's going on in the myeloma world. So that's why we strongly recommend that you find a myeloma specialist to add to your care team to work with your oncologist if your oncologist is not a myeloma specialist. And also myeloma specialists usually work out of a comprehensive care clinic or a research facility or a larger hospital. Hopefully that answers the question. I don't know if you wanna add anything, Todd. No, you covered it pretty good. If they only treat myeloma, that's a really good indicator that they're a specialist. Not always though the case, you do wanna make sure that they research. Just a personal story, about a month ago, my cousin was diagnosed with multiple myeloma and they felt they had a specialist because they only treated myeloma patients, but they were in such a large hospital that they have doctors that just treated each disease individually. So their doctor only treated myeloma, but their doctor did not do research. And research is where they keep up on all the latest changes and where they know everything about myeloma, the latest and greatest. So the research component is important. Someone is asking, they're a smoldering patient currently on treatment of Revlimed and DEX, and they have fatigue, diarrhea and neuropathy. It can be 12 shots help with fatigue. So I've gone to our patient solutions and went into the fatigue section and we do have vitamin B12, which is what they asked for. This is supplements, not necessarily an injection. I would assume it would be similar, but about two thirds of the patients reported success that their fatigue was lessened by vitamin B12. A third said they didn't notice a difference, but no one reported feeling worse. So that is good. So there is an actual live example of where you could use this tool to give yourself some clues on what might work if you're trying to combat a side effect. If anybody else has questions like that, we can do real world data right now and show you what crowdsourced solutions there are that you could present to your doctor as a possible solution for your side effect. I did wanna add, so we work with myeloma, we work with some other blood cancers. We work with some leukemia, forms of leukemia, and we have side effects solution tools for leukemia site. And so we were looking in to see, are the solutions different per disease? Does it make a difference? What disease? Does B12 work for myeloma and leukemia patients or lung cancer patients or any other type of patient? And from what the data we have so far is yes. So if a solution works for myeloma patient, it's gonna work for leukemia patient as well, or it has the potential to work for leukemia patient. So I wanted to point that out just because many of you do not have full blown myeloma diagnosis yet, but maybe experiencing side effects. Just because it's not myeloma doesn't mean these solutions can't be beneficial or help you. Again, they're crowdsourced by patients and why not take advantage of what other patients have tried to see what can get you the best help as quickly as possible? Yes. Otis is wondering, do MGUS or early stage smoldering myeloma patients have the same side effects that those who are taking medications experience? Great question. I share that question. I would say from the real world data that we've gathered, let me be clear, not all MGUS and smoldering myeloma patients experience side effects. And I would say the majority of them do not experience side effects and are surprised when they are diagnosed with MGUS or low risk, intermediate risk smoldering myeloma. However, for those that are experiencing in the personal observations that I have seen, multiple myeloma is diagnosed with CRAB. So C is calcium, which is like bone involvement. R is renal involvement. A is anemia and B is bone involvement. I keep saying involvement, but that's just the easiest way to describe it right now. And often those involvements result in side effects in anemia, fatigue, lesions, bone pain, neuropathy. Neuropathy can be caused by medications. So that's where it gets difficult to say, oh yes, neuropathy is caused by the myeloma itself or by the treatments. I mean, even now our myeloma specialists grapple with that, where does it come from exactly? So to give you a very vague answer, yes and no. But there are definite similarities and it's just trying to figure out through research what side effects truly come from the disease and which ones come from treatment. But there are definitely side effects that come from disease and those presented in the MGUS and smoldering populations tend to be similar of those that are full-blown myeloma. But it's difficult to say that it's because of the MGUS or smoldering diagnosis. That's where doctors get frustrated and want to see patients on a case-by-case basis to make sure they're not missing any other underlying comorbidities or issues or other immune diseases that might be happening in your body that's separate from the MGUS and smoldering myeloma. So hopefully that answers your question. And I see here that someone said, please list links to help tree programs specifically for smoldering. I'm gonna be doing that right now. I'll be posting our Facebook group, this community group and a couple other things. Do you wanna answer Janie's question, Todd? Yeah, so Janie said, have you heard high-risk smoldering patients with pain reporting on using medical marijuana? So we have a couple areas of pain. I went into joint pain. So we do have CBD with TCH in form of lotion, oil, edibles, vape or pain stick. So the medical marijuana comes in lots of forms and I'm not an expert at it, but you need to educate yourself because there's lots of different levels of potency, I guess you'd call it when it comes to that. And sometimes a vape will work where an edible won't or an edible works where an oil doesn't. It's a hard one. You kind of have to experiment a little bit, but it does look like 63% that have tried some form of medical marijuana for pain, joint pain specifically have reported success with that. I'm not sure what- I'll say most myeloma specialists and even a CBD specialist that came to speak to us last year highly recommend not smoking it. Creams and lotions are usually the best and then you can talk to your treating physicians about the edibles, but smoking increases the risk for infection so much that as patients who are immunocompromised already, you don't want to be smoking that. Do you know if that's the same with vaping or is that different, do you know? No, I don't. I think the issue was with inhaling it, so I would assume so, but I'm not 100% sure. I will include the link to the recording of the expert that came to talk to us about that though. Okay. So we have a couple of different categories of pain. We've kind of broken it out. I was in joint pain. This is body aches, pain, just general body aches. Again, the medical marijuana, only two people have reviewed it in this section. It worked for one, it did not work for the other. So it does sound like, again, it just depends on the person. Scroll back down to pain. Let's see. Back, jaw, neck, ribs, body aches, through urination. So we have a couple of different areas of pain. It depends what type of pain you're experiencing. This one is back, jaw, necks, or ribs. 15 patients, a few more have reported on that one. About half and half again, similar to the last other one I was in. So 50% do notice it helps and 50% notice it doesn't, or just don't notice a difference at all. So I don't know, hopefully that helps. Definitely talk to your doctor about that as well. I think most of them, at least those that I've talked to consider it an option for pain. I don't think it's taboo as much as it used to be, but it is more of a medical treatment option for pain. And again, in many cases it can have less side effects than some of the other pain meds that they might give you. So lots of people wanting links to the Facebook. I'm doing that right now. Has anyone taken balance of nature with any success? Is that, I assume that's a vitamin supplement of some sort? So that's a good question. We probably should add a search functionality within our side effects tool, our patient solution tool, where you could search balance of nature and it bring that side effect right up to you. Because right now you'd have to go into what is the side effect you're experiencing and then click into that to see if anybody has reported on balance of nature. So yeah, I'll make a note of that, that we need to add a search functionality for you to help the searching easier than going through all the individual different types of side effects looking for that. There's someone that's asking, should I go to a foot doctor for neuropathy? I'm on a cane. This is a great question. I think it really depends on the severity of your neuropathy and also there's, I would first go to your general practitioner or family doctor and ask what they recommend, who they would recommend you to. Often your family doctor, your general practitioner can refer you to more than one person. So maybe even an acupuncturist, maybe a foot doctor, but I would start there and then see where they branch out and suggest different areas of who you could see. I did provide the Facebook group in the chat or in an answer to one of the questions. However, I will also put that in the chat as I know that people see it in different ways. So hopefully those resources can help you. I included the Facebook group. I also included this chapter, which you're already a part of, but you can share with other people. The Myeloma Coach Program, we have coaches that have MGUS, we have coaches that have smoldering myeloma and it's a way to emotionally connect with somebody one-on-one. And then Health Tree University, you can get free online education about precursor myeloma. And then the question about, Lewis had a question, said some CBD is derived from hemp. I read that hemp is good for cell regrowth, which is not good for cancer patients because it may regrow cancer cells. I believe in the recording that I put as an answer to another question, which we will include all of these resources in the follow-up email. But here's the CBD and medical marijuana recording. She goes into, she talks about hemp in depth and about the relationship that it has for people that have cancer in case you are interested in learning about that. I put that in the chat so people can see. Yeah, I'm glad that people are interested in this, in connecting with our Facebook group and that is an active Facebook group. People share a lot of things and it's exciting to grow our community in that way. Todd, did you have anything before we start answering more questions? Well, I was just reading one that said has smoldering myeloma, taking Revlimedadex and gaining weight, would weight loss drugs interfere with my treatment? So the weight gain is most likely from the dex. If you're ever able to stop taking dex, that should improve. But as far as taking weight loss drugs, I don't know which ones you're referring to, but you need to talk to your doctor about that. I don't think Audrey and I know how that drug could interfere with treatment or cause other things or what weight loss drug you're referring to. Yeah, I would strongly recommend daily movement, doesn't have to be hardcore exercise, daily movement and then improving your diet and then talking to your doctor about a dose reduction before I would start a new drug that could possibly interfere. So definitely talk to your treating physician, but I would definitely go the route of diet, fitness and because it probably is steroid related, a possible dose reduction. And then if none of those work, then talking to your doctor about a weight loss drug, because those are just so risky anyway, even when you're not on treatment, that I would definitely try something first before going to that. I don't know personally, but I just have seen my sister-in-law go through it, watching the weight gain due to steroids. It's awful and it's so frustrating and I'm so sorry. And I wish I had a better immediate solution for you. Tammy said she spoke to a doctor today about weight loss medicine and they just don't recommend it. It's just too risky. And it just makes me worried. And at the same time, I know how difficult it can be emotionally to watch that. So maybe talk to your doctor about a dose reduction and then improving diet and moving and being patient. And I know that's a horrible answer and I'm sorry for saying it. Another question was, what makes you high risk smoldering versus just smoldering? And that was also, I will look up that video because we've had a session specifically about that. And I don't wanna give you the wrong answers when it comes to that. So basically it has to do with how close you are to active myeloma and what your genetic makeup of the disease actually is. So it gets a little complicated and medical professionals like myeloma specialists can explain it far better than I do. So I will pull that up for you. Do you wanna read what Meg said there? Todd? Yeah, so Meg said she's interested in hearing what options are being presented to high risk smoldering patients on treatments. Meg is taking Revlimed only she's on cycle 18 of treatment, but her dosage may have to be reduced from 25 milligrams to 10 milligrams due to neutropenia. The plan was supposed to be 24 cycles. Her oncologist doesn't offer any guidance regarding her current situation. So you're on treatment and you're asking what other options are available because of the side effects you're experiencing on the treatment you're on is the way I read that. And your current oncologist, I don't know if your current oncologist is a specialist or not or a general oncologist, but they're not offering any guidance. I don't know what do you have to say to that? Yeah, I think this is a really good, Meg, I think you might be part of the Facebook group already, but I think this would be a good question for the Facebook group. It's really frustrating. I would get a second opinion. Yeah, that's what I was gonna say. I would get a second opinion from a Myeloma specialist and then I would ask in a group setting where you're able to get like written feedback from people like Facebook, that's what I would, I'd ask this question, but then I would definitely get a second opinion because yeah, this is stressful. And I think we've talked before actually, so feel free to reach out to me after this webinar as well because it is frustrating. Yeah, I think an important thing, just where she says her current oncologist is not offering any advice or opinions. I hope that we're past the day and age where we just believe everything our doctor says and do exactly what they tell us to do and never question it. We have a right to question and if they're not giving us the answers we need, then we should find somebody that gives us the answers that we're looking for. So that was my initial thought too, was I would get a second opinion. If you're currently seeing a general oncologist and have a difficult time traveling maybe to a specialist, many of them will do a virtual visit for a second opinion. So you don't have to travel and they know it's a second opinion and they'll set up a virtual visit for you to discuss those kinds of questions. And so I don't know, sounds like Audrey knows you and knows a little bit more about your situation, but that's what I would do. Yeah, I think she is connected with specialists so she'll be talking to him, so that's great. Okay, good. And I'm glad we can help, I'm glad we can share different resources like the Facebook group that can get people connected with each other. It's really exciting. Thank you all for your input. We have an attendee that says, I want to mention how critical it is with these precarious conditions that we try and control stress as that impacts the immune system. Easier said than done, but this person has had seven years of great stability. Suddenly appear to be progressing to high risk smoldering and believe intense stress over the course of a few months could be a factor. Honestly, yes, I mean, we do want you to control your stress. I have a hard time saying that it's the stress that caused the progression because we just don't know. Could be genetics, environmental factors, timing, the way your body works. But for various reasons, I completely agree with monitoring and managing stress. And it's so much easier said than done. I definitely know that I should be managing my stress a lot better and we do know that stress negatively affects all systems of the body, like the physical stress literally affects our body. So I wouldn't say that it's impossible what you're presenting. I just want to be wary that we can't provide a direct correlation between the two, which I don't think you're doing, but I agree we should definitely try to find, no, no, no, we should make time to have self-care moments where we're intentionally avoiding or descaling stress. I completely agree with that. And make time, I wanted to emphasize, because nobody has time. So we have to make time to do those kinds of things. Wonderful, well, this has been an excellent discussion. Todd and I were kind of like, well, we'll see if they're interested and participate. And you guys just brought an amazing discussion to the table. So thank you for your participation, your insights, your resources, your help. And thank you for being here. We truly appreciate it. Todd, do you have anything you want to say before we finish up today? No, just other than thank you, I love getting to talk with people and meeting you all, even though we're not really meeting, but it's been great and I appreciate it. Yeah, thank you all for being here and for your kind words. We just truly, truly appreciate you. I'll be finishing with a couple of outro announcements and then we can finish for today. So we will not meet again. I know it sounds crazy, but this chapter meets every other month. And in December, we don't host any events because nobody tends to come. And we also want to give you a break and me a break. So we will be joining in January, start off the year in January. We'll be talking about how to read MGUS and myeloma labs, what to know and when to be concerned. Like the doctors are always telling us, watch and wait, watch and wait. Well, what should we be watching and what are we waiting for? So that's what we're going to be discussing. And as a reminder, when you leave the session today, I'm going to turn on my light. As you leave the session today, we'd appreciate you taking two to three minutes to fill out that brief survey about your experience. We appreciate any and all feedback. You might be interested in other community events we have coming up tomorrow at 1 p.m. Mountain as our Mountain West myeloma chapter. And that's with Dr. Elmandib Godara at Huntsman. The 20th at 1 p.m. Eastern is our non-secretory chapter. For those that aren't familiar, non-secretory is when you actually have myeloma, but it's not presenting as a monoclonal protein on your labs. And we're going to be hearing from myeloma expert, Dr. Ola Landgren, as he talks about his immunopet clinical trial. Now that might be interesting, not necessarily open to, but interesting, that the trial may not be open to, the session's open to, I'm just smoldering patients, because it's literally a PET scan that detects myeloma. So that's what's going on in the clinical trial. And it would be interesting as a precursor patient to see if it will ever be approved for precursor patients there. And it's one of the questions that I have for Dr. Landgren. And somebody's asking when the meeting is in January. Unfortunately, I don't know yet. It's a great question, but I promise to email each of you when the meeting is scheduled so that you can register for it. It's just hard with so much time between now and then to plan it, but I love your question, I love your proactiveness, and I will make sure to email each of you to make sure that you know to register for the event in January when I have that. And then the 20th, that same day at 7.30 PM Central is our soporte para pacientes. So if you or your loved ones speak Spanish and are wondering about some of the resources that we have there, we have a Spanish speaking chapter, and we're gonna be talking about nutrition. The link to sign up for any of those events and even more events I haven't mentioned is found at the bottom of the slide. A big thank you again to our sponsors, Krista Meyers Squibb, GSK, Genentech, Avvin, Amgen, and a big thank you to each of you for helping us grow this MGUS and smoldering Ayllama chapter and community. I really truly appreciate you and hope that you have a great rest of your night. Thank you everyone, bye bye.