Welcome, everybody, to the Facebook Live. My name is Beth Faiman and I'm just gonna be waiting for people to join. Thank you so much for coming today. I'd love to see you pop up in the chat and I'd love to see where everybody's coming from. Welcome, welcome, welcome, everybody as you coming in. Thank you. I'm watching myself from my phone, so I can see if I'm talking to myself or other people. And unfortunately I see other people. Hi, Yeard. Thanks, Beth, hi. So, I am not alone. This is great news. I am my own IT person tonight, so if things go wrong, it's my fault and I hope that does not happen. I'm really looking forward to a great discussion with all of you and I'm just gonna go ahead and give us about another minute or so for those to join. Everybody's popping in. Hi, Angela. Jasmine, this is great. Maybe type in the comments where you're coming from. I see some from Florida, great. I'm in Cleveland, Ohio and it felt like Florida today. It was 70 and sunny. Oh, I see Robin is coming from CT, Connecticut. That's great. Wow, there's so many great people. Kathy is coming in from. Yeah, North Carolina. New Zealand. I love New Zealand. I was there visiting my friends in Australia, Melbourne and Sydney. I was there about four years ago, so I'd love to come back and I'd love to meet you if I'm in there that. Oh, Canton, New York, South Jersey. We really have a great, great distribution of people here. Oh good. Wow, Texas. And we have a hi from somebody that, is it Kurt and Susie. Ooh, Stephanie Smith from Toronto, Canada. Most of you who know me, my husband's from Winnipeg, Manitoba in Canada and I kind of feel like I'm a honorary Canadian. Canada's just a couple hours straight drive up north about three hours, and so I love to go to Canada. My son just took up ice hockey as well, and so he considers himself a Canadian hockey player. So, fun stuff. I think we're about two minutes in. We have Denise from Chicago, my friend Steve. Hi, Steve. Also from Florida. He knows and I know who he is, and so he doesn't have to put his location. All right.

All right, well, okay, my name is Beth Faiman. I wanna thank you all for joining in today. Gosh, this is great to see all of you from all over. I think I was instructed to give maybe one more minute for everybody to get set up in here and I'll do my opening remarks and we'll get into some question and answers. Fortunately, many of you had sent in some questions ahead of time, but what I'd like to do is try to get to maybe one or two of the prior questions and then I will get to the ones in the chat. These half hours I was just saying go so quickly and I really enjoy being able to do them and answer as many questions as I can, so I'll try to be brief and to the point. And remember, you can always go to myeloma.org. Has lots and lots of resources for you, so that you can be able to research on your own. We also have the cancer answer line, so anything that I don't answer for you today, you can also go to the cancer answer line as well. Okay, I think we're good. Oh by the way, Steve is a goalie. That's great to hear. Wonder how your knees are these days.

Okay, so hi, everyone, I'm Beth Faiman, and I'm thrilled to welcome you to this special Facebook Live event as part of the Myeloma Action month. Myeloma Action Month is a global social awareness campaign that takes place every March to raise awareness for multiple myeloma. Every march we urge you to champion Myeloma Action month to make impact on those living with myeloma. Throughout March we're shedding light on multiple myeloma and empowering patients and care partners with valuable information. Whether you're a patient or a care partner or simply curious about multiple myeloma, this question and answer session is for you. Drop your questions in the chat and I'll do my best to address them during our live discussion. And if you're looking for more ways to get involved during Myeloma Action Month, please be sure to visit, www.myelomaactionmonth.org. And don't forget that there is going to be a broadcast with Dr. Saad Usmani for Memorial Sloan Kettering and of course Dr. Joe and everybody knows Dr. Joe as well.

So, let's get started. Okay, let's see who's in. Let's see if there's any questions in there yet. I'm gonna get started on one of my questions that Linda sent in already. Linda says, my husband has multiple myeloma, he has little appetite but he is forcing himself to eat, plus he has high calorie boost daily. Do you have any recommendations for anything that might stimulate his appetite. Dronabinol was prescribed and did not help him. Are there any CBD oils or other things that might help? Linda, I'm so sorry to hear about your husband and his struggles with eating. There are so many things to consider. Number one, what's the type of treatment that he's taking? Is there an opportunity to discuss this side effect with the main treating team? And sometimes we have palliative or other specialists that might be managing this loss of appetite, but the treating oncologist doesn't understand the gravity of the situation. I think it's important to not overly stress out about food. Food should be good and I think sometimes the care partners and patients have different perceptions about the food. So, I look at things like their weight. Are they keeping their weight? Maybe they're not eating as much, they're taking their shakes, but their weight's about stable. I look at the treatment regimen. Is there myeloma in a point of remission where they can take breaks? For example, there's a medication called talquetamab, which is a newer bispecific antibody. It has a special target called GPRC5D. And we recently learned at our ASH Meeting in 2023 December that if patients had a really good response to that talquetamab bispecific, then you can go to less often, and so the taste is better and the appetite can get better for some people. Another medication called selinexor, which is a pill. And the selinexor is very effective at controlling myeloma for many patients in combination with other drugs. Sometimes by holding or reducing the dose of selinexor that can help the appetite. So again, I'm not sure, and I don't wanna take too much time left on this question, but I'm not sure about what medication he's taking to treat his myeloma. I would like to investigate other causes, get a nutritional consult and also enact the help of gastroenterologists and definitely talk with your treating oncology team about that side effect. Take advantage of small meals, take advantage of when you actually crave food and try to avoid the foods you love, so that when you do feel like eating more in the future then hopefully you'll be able to do that. So, thank you so much for asking. I'm gonna go back to some of the questions.

Okay, so my wife is 45 years old with no symptoms except for hypothyroid and taking hormone therapy. While comparing her medical records for the last 10 years, they've discovered that the total proteins were always on the high side and didn't cross too high. Is this something to be worried about? Now without getting into too much detail, 'cause we don't wanna do too many details, we wanna speak in general about health. Whenever anybody has elevated total proteins, one of the most effective tests we can do is something called a serum protein electrophoresis or SPEP. That's a test that a primary care provider or a GP, depending on where you live globally, can order in many areas. It looks at the protein. So now sometimes you can have elevated total protein, but there's a lot of different immune conditions that can cause it. So it doesn't necessarily mean it's multiple myeloma. So, if she hasn't been diagnosed with multiple myeloma yet, we can see if there's somebody in her community or in her area that can check this SEP test. And it looks at all the proteins down a gel field for this spike that you can see for myeloma. So again, I would get more information from the GP and look at other things. We have this thing called CRAB criteria. It looks for hypercalcemia, renal or kidney problems, anemia and bone damage. So putting the pieces of the puzzle together with all the lab tests that look at organ function, blood counts that look at your hemoglobin, hematocrit and other blood cell indices as well as that protein test will tell you if there's something to be concerned about. So I think you need a little bit more information before you start worrying. It's easy to worry about a condition until you're diagnosed, but definitely get more information in the appropriate blood tests. And you can always go to myeloma.org. There's an understanding blood test and outlines the common test that we do for myeloma if you're in an area that might not actually have a lot of availability for blood testing.

Okay, so going back down in the chat. My question is always the same. Wondering if you reach MRT negativity after induction, what is the benefit of doing stem cell transplant? Well, I'll tell you, if you ask 10 myeloma specialists, Terry, you're going to get a hundred different answers quite frankly. So, MRD is a diagnostic technique. It stands for minimal residual disease. That is using a test called Next Generation Sequencing or NGS that looks for one in a million plasma cells in the bone marrow. Most of you who know me know I've been managing myeloma for almost third, well, I don't want to age myself too much. I started taking care of patients in 1994 with multiple myeloma and more actively more recently in '95, '96. And at any rate, MRD is a technique where we can very specifically see one in a million plasma cells in the bone marrow under this next generation. So, it's kind of like looking from outer space. We can look at cytogenetics in the bone marrow. So, it gives us a good blueprint. But when you do next generation sequencing, it's literally looking like in the back of the eyeballs. That's how close you can look at these things. So anyhow, if you have very little plasma cells in your bone marrow, the idea is that it will translate to an improved progression-free survival, longer remission period. But the jury is still out in my opinion. I don't use MRD testing to decide whether or not to give people treatment A, B, or C. But if you're losing MRD, I might deepen the treatment. So I wouldn't take away treatment, but I would add on treatment if you're not deep enough. Again, the problem is that I've been in the myeloma space in the 1990s and 2000s. We never achieved MRD. It was like that black swan initiative that Dr. Durie talks about. You never thought there was a black swan until you saw one. Just like we never thought there's a possibility for a cure until we found some potential cure. So I know I keep talking, but I'm very passionate about this MRD. It's a great test, but it's a nice to know, not need to know. I look at the individual pictures.

So, why would you or would you not wanna transplant? Talk about the risks, benefits, and alternatives to your providers. I absolutely have many patients that do not go for upfront transplant. And I don't think that's an unpopular opinion with all the new drugs. So if you are MRD negative or if you had a wonderful response and you say it's not right for me right now, then that's okay. We keep giving you reduced doses of what achieved that remission status. Keep monitoring your treatment remission status and keep a close eye on you. So I don't know if I answered your question, but if you ask, like I said, 10 different myeloma doctors, you'll get a hundred opinions. People say absolutely, still do a transplant if you're MRD negative. And I kinda, I don't think you need to. I think it's a decision, a personal decision you should make with your treating team.

So, okay, what levels of paraproteins and lambda and kappa will you know if you're in the early stage or late stages? There's a lot of confusion with crab and such. So kappa and lambda tests are different parameters. So when you look at the how we diagnose myeloma, it starts with the immunoglobulin. So in our bone marrow, our plasma cells make all the healthy immune cells or many mature part of the immune cell makes intact immunoglobulins that are Y-shaped antibodies. And that the role of the immunoglobulins are to make proteins to protect you from getting sick. They make mostly these heavy chains, IgG, IgA and IgM and then there's this light chain component that's kappa, lambda. Now some people will just have the kappa and lambda fly off that lights chain structure. So, you might not have an M spike or an intact IgG cap or IgA lambda. So for some people that light chain is how we measure their disease. And before 2004, before we had a test called a light chain assay, that those patients were called non-secretory patients. They didn't secrete the protein. We couldn't measure their disease. Since 2004 we've been able to understand that the kappa and the lambda light chains are a marker of remission status. So, the International Myeloma Working Group does have response criteria. So when we start treatment in somebody with a light chain type, let's say your lambda light chain is 2,000 when we start treating your myeloma and we still wanna see that go close to normal or in the normal range if possible. And then we watch that lambda at the very low level and make sure it doesn't go up by 0.5%, 0.25%. There's different parameters. That would be a sign of relapse. So again, what type of protein do you have, how high was it, where was it located? And then watching that on a regular basis. Now each provider has different ways of monitoring myeloma. In general for the first year I do a monitoring about every month, sometimes more often, but usually every month is all that's recommended by the guidelines. And then once you've achieved this nice remission, we could maybe go to every two months or every three months if you have a sustained nice remission. So again, the myeloma.org website has a nice understanding labs module. So maybe that would help make it more sense for how to look at the labs, okay?

So Kathy says, I have been on Darzalex since January, 2019. How long will it keep on working? Yay, Kathy. I am so happy to hear that you've been on Darzalex for so long. Darzalex is a medication called an anti-CD38 monoclonal antibody. When it was approved in 2015 for patients that had had four or more prior lines of therapy, we gave it in the IV and it took all day to give. Now most people can get a shot in the belly over three to five minutes. Of course it takes longer to mix the medication than it does to give the medication, but we can give it on a weekly. Weekly for eight weekly then every other week and then monthly. Recent studies published at American Society of Hematology meeting in the last year, including 2023, show that newly diagnosed and relapsed patients with myeloma can have nice long durable remissions. What's nice about Darzalex is it has very few side effects. We worry about infections such as pneumonias, low immune counts, so watch out for pneumonia and respiratory infections on Darzalex. And then we also wanna watch for shingles. so you should be on acyclovir. In terms of how long it'll work for you, for some people with quote, unquote, good normal genetics of type of myeloma, normal FISH, not high risk. You can stay in remission for months to years just on Daratumumab or Darzalex maintenance, especially if it's given in combination. We have studies for smoldering myeloma with that drug. We have studies for patients that have been on remission after stem cell transplant and I've had people that have been on that medication since 2017 as well. So, the fact that you've been on it very long is a very good prognostic marker. But continue have your blood counts monitored, continue to live well so you can stay healthy for your next treatment. Try to be as active as you can, not necessarily running a marathon, but just being as active as you can. Keep the blood flowing, make your appointments. And sometimes if you take planned trips we can stretch out that Darzalex treatment as well. But hopefully you'll be one of our, what we call exceptional responders that will continue going on and on for many, many years. So I know I didn't give you a number because I don't know you, but in general, since you've done well for a long time, you can continue to do well if you stay on course. Okay, let's see.

Laura said if tandem stem cell transplant do not achieve a remission, at what point would CAR T be an option? M spike is 0.21 year post-transplant currently taking Pomalyst one cycle. Asking for my husband. Again, not getting into too many details. When we make these recommendations and answer these questions, we don't know the background cytogenetics of the tumor. But there are, as Dr. and I don't mean about him because he is not here, but Dr. Durie always would say there's three types of patients. Patients that would go into a complete remission. Patients that would go into not quite a zero, but go into back this MGEs stage where there's just this low-level monoclonal gammopathy, and then patients that might not respond well at all. And that's kind of how I view myeloma, is that everybody's different. So we take into account the genetics of the tumor, those FISH tests. So, you have high risk characteristics. Was this LDH level high diagnosis? Were you really sick at diagnosis? Any kidney failure at diagnosis? We also take into account the patient's age and fitness and other comorbid conditions when we kind of guesstimate how things will will be looking. Now when you had two transplants and the M spike is 0.21 year post-transplant, if if you're on a maintenance Pomalyst, then sometimes just staying on that Pomalyst over time can deepen your response. We've seen this other drugs like Revlimid and some of the drugs like daratumumab that just staying on treatment longer can eventually deepen that response. So I would stay the course for right now and get regular lab monitoring. Again, the International Myeloma Working Group recommendations are if the M protein jumps by 25% and then 25% more and then goes above a level of 0.5. So for example your 0.2 right now, as long as that number stays below 0.7, we don't have to do anything as they'll do imaging rate routinely, et cetera. But I would say if it, I hate for my slang, but I say if it ain't broke, don't try to fix it. I'm from Ohio. And I think that's the case with myeloma. Sometimes these days I think we do too much, you know, finagling of the treatments. If you're feeling okay and you're active enough, you had two transplants, you're on a nice maintenance and things are quiet, just go with the monitoring. To answer your question about when can you access the CAR T or bispecifics. CAR T cell therapy is approved for four prior lines of therapy or more, unless you find a well-designed clinical trial that will provide earlier access from one to three prior lines of therapy. So, if you go to... You can also, the clinicaltrials.gov is the website that I send people to to find out about clinical trials in their area. Again, there is the myeloma answer line that will be put in the chat somewhere and that will also help provide you the cancer. I keep saying cancer. The myeloma helpline will be able to, it's 452-cure will be able to answer your questions perhaps about accessing your area. So good luck and I would be happy with that 0.2 M spike. Sometimes it never goes away, but that doesn't mean you're not in a really nice remission. So, stay positive.

So my dad was diagnosed with monoclonal gammopathy in 1984. He's now 83 and was just told us he has myeloma, his PET scan's clear but he's not at an age to get bone marrow transplant. He starts treatment next month. He'll be on three medications and desperate for hope. His blood in mice and shows that he has anemia. I need to know I'm helpful. So what I advise is I said, try to see if dad will allow you to be a part of these visits. So I had a patient in my office the other day and her family lives in two different cities across the country and she's in my area. And I said, how about we FaceTime them in? You're here for the office appointment, I'm gonna share with you important information. Why don't we FaceTime 'em? And just on these smartphones you can pull in the different family members. And connecting with that care team will provide you important information. The three drugs are probably daratumumab, lenalidomide, and dexamethasone. And these are drugs that were found to be effective in people that could not undergo stem cell transplant. Which is fine because it's a big deal and we don't necessarily need to do stem cell transplants in 2024 for everybody as we talked before when I was answering Terry's question. But the DRD regimen from this MAIA study showed that people can go into nice deep remissions with this shot in the belly, pills you take at home and some low doses of steroids that you can eventually get rid of. It sounds scary but it's really kind of considered immunotherapy these days. So, it's not the traditional chemotherapy. I have had patients on the DRD study and many of them have been in their 80s and some of 'em in their 90s. And these medications are generally very well tolerated. We have to find the right dose or the right medication for the right patient. So the center that you mentioned that your dad is at is amazing and talk with the care team, get dad's permission to be part of the visits if that's something you're interested in. But I know there is a lot of hope. Especially because he's had MGEs since 1984, that's amazing. That tells us that he's got probably, quote, unquote, good type of a myeloma and should do well even though he's already exceeded a normal lifespan for a man his age. We still hope that he can get some nice long, good quality and quantity of life with this three-drug regimen. And don't go to Dr. Google, try to access the healthcare team. I know so many great people at Moffitt, I'm sure they're very happy to help you.

Going on to Nancy. Nancy says, I'm getting ready to have a stem cell transplant and have some questions. If they harvest my own cells, aren't they also harvesting the myeloma cells too and injecting them into me? That's a great question and I get that quite often. When you think about how cells develop. In the bone marrow, you have these stem cells. When they grow up, they can be anything that they want. The stem cells decide to become either what we call myeloid cells on one side of the tree is how I picture it like a tree. And that's where you can get people with certain types of leukemia and blood cell disorders or on the other side of the tree are your lymphoid cell line. As you escape the bone marrow into the bloodstream, you get your mature B cells, your mature T cells. And the most mature B cells are the plasma cells. The plasma cells as I mentioned, their job in life is to make proteins called immunoglobulins that protect you from getting sick. So when you're harvesting the stem cells way up here in the bone marrow, you're not going to be getting the myeloma cells collected through there. The apheresis machine will take off just those stem cells will float to the top of that apheresis machine. And that's what's put into a little baggy and frozen with preservatives, so we can give them back to you. Now many studies from the 1980s on have said, well, maybe myeloma cell has been expressed on the stem cell clone. And so that might be it. But numerous studies have shown the effectiveness of stem cell transplant in deepening remissions in myeloma. And then it's, you go on to a maintenance phase afterwards. So there's different studies that we can offer you and depending on where you're located geographically to test different ways of doing maintenance in myeloma with newer drugs that are now available. But the standard of care is a pill called lenalidomide, which is offered to most people also called revlimid. And so that will deepen any remission and continue to keep things as quiet as possible. So number one, we don't think that your myeloma will be harvested with your stem cells, it's just your stem cells. And then number two, there's more of an immunologic effect that occurs with that stem cell transplant. And the studies have shown that transplant's a good thing for many different people. And oh my gosh, is it really 7:27? Oh my gosh, these just fly by. I gotta go look at my question and answer and stop talking so much. I could do this for hours. Thank you for bearing with me.

What can happen if you're on zometa and your calcium levels go up to 12? So zometa or zoledronic acid is a medication that's intended to strengthen your bones. It takes calcium from your bloodstream The important part of the zometa The important part of the Zometa is that we used to give it monthly forever and then we found out that some patients had problems with their teeth. It didn't need to be given forever. It can be harmful for the kidneys in high doses for long periods of time. If you wanna learn more about bone health and myeloma, Dr. Jens Hillengass from Roswell Park and I did a program in November of 2022 on living well with myeloma. So I would suggest to go watch that if you wanna learn more about it. In the interest of time because it's almost 7:30. But if your calcium levels go high, we like to say, why is it high? Is it high because of the myeloma's acting up? Is it high because you have a secondary parathyroid problem? So getting appropriate blood tests, making sure you're not dehydrated and making sure that the myeloma's in remission, 'cause sometimes there needs to be a change in the myeloma regimen to effectively control it. So just like anything like high blood pressure, diabetes, your body gets used to the medications that you're being given. Sometimes you need to change things up with a different class of immune therapy or different class of drugs to get you back into a good remission where you can hopefully stay for a long, long time.

And I think I have time for maybe one more question. Okay, so let's see. What's one can I do quickly? I mean everything looks so wonderful here And thank you, Robin, for putting things in the chat. Robin Tuohy, everybody. Yay, Robin. Thank you for being there as a support system. So okay, we'll do one more. Wanda says about to start second line treatment Dara, Revlimid, dex, how effective is that drug if you're a high risk gain of 1q only remain in remission for 13 months after induction and chose not to have a stem cell transplant although eligible. Wanda, even though you have high risk with a gain of 1q, we know that there are medications out there that can help. The daratumumab anti-CD38 is a very effective regimen to control myeloma. There's other anti-CD38, there's a medication called Cetuximab as well. There have been some studies that show that that anti-CD38 can help control patients maybe a little bit better with the gain of 1q. But I think in general the Dara, Rev, dex is a really effective regimen. We talked about that with the gentleman, the older gentleman that had MGEs since 1980s is now gonna be offered that. It's generally well tolerated. And I think just if you have one high risk clone, sometimes your body doesn't behave high risk. It's taking the medication, monitoring the disease. And it's okay if you didn't opt in for a stem cell transplant because sometimes you can change your mind or get in a good clinical trial with a bispecific antibody or CAR T-cell therapy. So many people are concerned about being in a clinical trial, but I think clinical trials are a great way to get access to newer medications. You can get financial help with reimbursement for driving expenses, sometimes overnight hotel expenses. You get your own study nurse, you get advanced practitioners like me, doctors, a whole team of people that are oftentimes willing to help you as well.

So gosh, I'm over the time. This is so much fun. Thank you for listening to me. I think I have to close out now or I'm gonna be getting into trouble from the, they're gonna take over my internet. So I wanted to say thank you now for our sponsors and I close out the window that had my sponsors, oh my gosh. All these wonderful people that helped support us for this event. You, thank you so much for joining in to this event. I hope you learn something to help, hopefully you learn something that will help you in your practice or with your friends or family. I'm just scrolling down to say thank you to our people that help support this. Where's our people that help support this? I am the worst IT person in my life, hold on. Jason sent this to me. Jason, I'm so sorry. I actually was doing pretty well and then now I screwed it up. Oh, pardon me for my French. Okay, here we go.

Myeloma Action Month sponsors. I wanna thank you and take a final moment to say Myeloma Action Month sponsors. 2seventy bio, Amgen, Binding Site. Bristol Myers Squibb, GSK, Karyopharm Therapeutics, Pfizer, Regeneron, and Sanofi. We couldn't do it without you and the generous sponsors. Please join into Dr. Saad Usmani and Dr. Joe Mikhael. I'm not picking one or the other. I love 'em both. I think they're both very knowledgeable and they're going to be doing the next Myeloma Action Month Facebook Live. If you have any questions until there's a cure, there's the IMF. Go to, myeloma.org and look at all the resources they have there for you. And thank you so much and have a wonderful day. Evening, bye.