- Hi everybody, my name is Beth Faiman. I'm coming to you from Houston, Texas with my friends.
- Tiffany Richards. I'm a nurse practitioner.
- And Donna Catamero, also a nurse practitioner from New York City.
- Thank you so much for joining us. So you're joining us today because it is Blood Cancer Awareness Month. This is a live question and answer with Beth, Donna, and Tiffany. And so we are members of the Nurse Leadership Board for the International Myeloma Foundation. So we wanna first, before we get started, thank you to all of our sponsors for BCAM. We'd like to remind you that September is Blood Cancer Awareness Month, and do you know what multiple myeloma is, and for Blood Cancer Awareness Month in 2024, the International Myeloma Foundation's goal is to put the spotlight on multiple myeloma, the second most common blood cancer in the world. And Blood Cancer Awareness Month is a global social awareness campaign that takes place every September to raise awareness on all blood cancers. Every September, we urge you to help raise awareness of myeloma by sharing posts from the International Myeloma Foundation's social media channels, or by sharing what you know about myeloma with the hashtag #kNOwMyeloma. I have it typed in the chat here. We cannot do this without each and every one of you. So please spread the word and share the hashtag #kNOwMyeloma. So today, again, as I mentioned before, with members of the International Myeloma Foundation's Nurse Leadership Board, we'll be answering questions for you. We have 30 minutes, and oh my gosh, I've done a couple of these, and they go by so fast. And so I'm just gonna get started by, oh, let's see here. Let's see here. I'm looking for my streaming. Where are my chat? Oh, hello. There's the people. I was telling Tiffany and Donna that sometimes you feel like you're in a silo, that nobody's there with you. And thank you Stephanie for putting in the hashtag #kNOwMyeloma and Jason did that too, and oh my gosh, this is great. So I just wanted to share with you before we get started why we're here. So in 2005, 2006-ish, the International Myeloma Foundation had this great idea. Diane Moran actually who's a good friend of ours and she's our fearless leader, she thought that nurses were critical to the care of myeloma patients. We had drugs like Velcade coming out and thalidomide and all these side effects. And she observed as well as the IMF that nurses were really critical into managing those side effects. So I joined in that year, Tiffany came the next year, and Donna came shortly thereafter. And since then, we've been passionate about spreading the word in multiple myeloma. So as we are going, well right now we're here for our annual meeting and then we're going to Rio to the International Myeloma Symposium. We'll be educating nurses from Rio and we'll be partnering with Rio. We even have headsets so we can speak to them in their native language. So again, bridging gaps and disparities. And then we'll have a nursing symposium as well. So thank you for coming. We have watching from Toledo, hi Daphne. I know you. In Ontario, and we have Grace shares with us that she's been on immunotherapy. Donna, why don't you start us off by sharing with what you think is important about immunotherapy for patients to know? Because you are at Mount Sinai and you've done immunotherapy trials for years. And what are like two important things you wanna share?
- So two important things I want, especially with the novel immunotherapy. So your bispecifics, which are the new kids on the block, especially those bispecifics at target BCMA, infection, infection, infection. So making sure you're up to date on your vaccinations and really infection prevention. So really discussing that what that looks like for you as an individual with your healthcare team. But I can't stress enough that it's September, flu shots are available, everyone should be getting vaccinated with their flu and their updated Covid boosters because we're seeing a lot of patients. now get the flu and Covid, actually more patients were hospitalized with Covid last year than with flu. So I think that's really the take home with these patients are doing very, very well on these bispecifics. Outcomes we haven't seen before with a single agent drug. So patients are doing well. So if this is the right therapy for you, talk with your team, but then keep in mind infection prevention, especially this time of year.
- Yeah, and we have some really exciting data that are coming out of the International Myeloma Society meeting next week, which we can't talk about yet because the meeting didn't happen. But between that and ASH, we're just so proud to be working for institutions that have these drugs and hopefully get the drugs to people that need them. There was an interesting question that came in the chat, Tiffany, what are some of the symptoms of MGUS? Maybe tell us very briefly, monoclonal gammopathy of unknown significance. It may or may not have symptoms So what do you need to know about that?
- So oftentimes with MGUS, it's picked up on an incidental finding. You go on for routine blood work and they see an elevated total protein. That's generally how it's found. Occasionally MGUS can cause some neuropathy, but by and large, patients with MGUS don't have any symptoms, and that's why we can watch them. And a lot of times they go years and they may never develop myeloma, which that's the one benefit of having a benign precursor disease.
- We're learning from the iStopMM myeloma study that was from Iceland, stops, treats, or prevents multiple myeloma. We're learning so much from that study that was part of the Black Swan Initiative by the International Myeloma Foundation, and data keep coming out from that study over and over again. And we're learning about the lab values. Many of you on this call might have had free light chains assessed. And when they determined the ranges for the free light chains, it was based on old tests. And now we learn that people with kidney disease might have different normal levels. So I think those are so important points for patients to know when you're interpreting lab values, what does that mean? So for MGUS, we might see patients for MGUS as a consult and say, "Gosh, what does this mean?" And so we take into account their age, their kidney function, and really just watch them. We also know there's this monoclonal gammopathy of clinical significance. So maybe it's affecting the nerves or amyloidosis. Now this is a myeloma talk, but maybe one of you want to say a word or two about amyloidosis in multiple myeloma because that does affect each other.
- Yeah, and the treatments are very similar for amyloid and for myeloma, it's still the proteins, the free light chains that we're monitoring. So it does parallel how we manage patients and these patients have similar symptom management. So they're usually in our care as well. And I think Tiffany, you actually have an amyloid clinic at MD Anderson?
- Yeah, we do. And we partner with cardiology and pulmonary and nephrology. And it's really this-
- It's a team.
- It's a team approach to managing patients with amyloid.
- Absolutely, I have a presentation that's coming up at the International Myeloma Society meeting next week that focuses on, we have an advanced practitioner clinic, we have 1,600 patients that people like me, nurse practitioners, have diagnosed and managed. We have tumor board meetings where we convene with doctors. So you might see me as the face of the person that's like interpreting your labs and diagnosing your condition. But it's really a team. So what Tiffany said and Donna said about the team approach to care, it's so important to personalizing. So let's move on to the next question. Donna Marie has a question. I am on KCd, should I still be getting flu and Covid shots? So Donna, you're Donna. No, you're not Donna Marie, you're.
- Donna.
- Donna. What's your middle name again? I can't remember.
- Dominica. My sister's Maria, so I love this name.
- So should she get her flu and Covid vaccine?
- 100% yes. The caveat is that if you're on a steroid, I would look at the timing of when you're taking the steroid versus when you're getting your vaccinations. But really everyone should be getting their vaccinations, and if I need to delay a treatment a few days so that someone can get their vaccination, that's to me my highest priority.
- Exactly, and Tiffany, one of the questions I have all the time is, what if I'm on drugs like daratumumab, does that affect when you get or recommend the vaccines because it's an antibody?
- Yeah, so if their disease is well controlled and they've kind of gone into this maintenance phase, we may delay the daratumumab by like a month to allow that vaccine response. But if they're in an aggressive relapse and they need to get the drug, we just need to get their disease under control. And so a lot of times, it's just like this risk versus benefit and trying to weigh those things.
- Absolutely. So I had, oh hi Peggy from Cleveland. I know you too. So Elaine says that her MGUS started as an itch in her right arm and then had migraines. And so that's one of the things where people will have odd symptoms, not that you're odd, the symptoms are not normal and then you go to your provider and that's exactly what we want. We want people to mention their symptoms to providers, and that's a way that you can raise awareness for myeloma because sometimes you have something that you kind of just brush off and it ends up being a big deal and that like leads to a myeloma diagnosis. So thank you for sharing that. Hi Tony from Canton. We have, oh, this one. So how much should people share with their nurse and doctor when it comes to side effects? Ooh, well that's very personalized. We really, really, really wanna know everything that happens to you, why? Because we can't take care of conditions that we don't know are going on. So what are some of the strategies, Tiffany, you share with your patients for communicating with your nurse or doctor?
- Yeah, I usually tell patients it's not for you to decide and not for Dr. Google to decide if your symptoms are important or not and that you need to let us know. And then I give them parameters of like what you could send via MyChart or through like a portal versus, like this you need to call versus this you need to come into the emergency room because the urgency is gonna be different depending on the symptoms that the patient has.
- And that's an important point because I think as healthcare providers, we're super busy in our clinics, but everybody is very important to us. We wanna hear your concerns and what's bothering you. So sometimes they'll say, "Oh I have an appointment with you in three weeks. I'm just gonna wait until then to tell you about my severe diarrhea or my fevers." And we would rather you mention those earlier, and that's a good opportunity for telehealth visits. That's something I love to do is connect with people one way or another, whether it's by Zoom or a phone call. Do you still use telehealth in your practice, Donna?
- We actually ever since Covid, it's something that's here to stay and that we utilize more and more now. And I think one of the benefits that came out of Covid is telehealth video visits. It's widened the access of care for patients that if a patient is having a symptom, jumping on a quick video visit with a patient is much easier than having a patient taking time off from work to come in to the office. So please utilize the resources that we have available to you.
- Absolutely. So some of the newer therapies, I'm always asked, what are some of the newer therapies that you're excited about? I think of them in phases. So from newly diagnosed myeloma to relapsed myeloma. So the newly diagnosed myeloma, we have some really important trials. We have the IMROZ trial with isatuximab and then we have the PERSEUS study which has daratumumab, both anti-CD38 drugs. The anti-CD38 is a monoclonal antibody that attacks the myeloma cell. It's expressed on red cells so it can cause some like blood and type crossmatch problems. It can also cause some problems interfering with blood tests. But I think the important thing to me that came out of those studies is that most patients at newly diagnosed myeloma should probably be offered four drugs induction therapy, so this first therapy they get, because those two studies did show that the deeper remission you get hopefully will translate to an overall survival. What are your thoughts about personalizing treatment, we'll go to Tiffany first with four drugs versus three drugs with newly diagnosed myeloma?
- I think for one of the biggest questions is, is this patient fit versus frail? I think if you have a frail patient, then maybe a three drug regimen would be more appropriate for them versus somebody who's fit. But I really think it's like tailoring it to the person in front of you and looking at what other medical conditions they have, what other symptoms they have, and then also like how aggressive is their disease. Because if they're frail because of their myeloma, then maybe going forward with a four drug regimen is appropriate. And so I think you have to weigh all those things when you're seeing the patient in front of you.
- Absolutely. What are some of the things you're excited about newly diagnosed myeloma, Donna? Or even like first relapse. So we're not always going to buy specific antibodies. Not everybody can get a CAR T. What about standard therapies?
- Well, all right, let me deviate a little bit. Because I do a lot of clinical research and really what I'm excited about is upfront CAR Ts. So we're doing the clinical trials now both in the transplant-eligible and transplant-ineligible patient populations. So I'm really excited to see what the outcomes are gonna be. So that's for my newly diagnosed. And just to bounce off of what Tiffany was saying about the four drugs, I think we can offer most patients a four drug combination and then we just personalize it. Do I need to dial back on the dose, maybe go down on the dose, go down on the schedule and titrate that regimen to the patient but still giving them the benefit of four drugs. So I mean these are the things, and I think some research is coming out of the International Myeloma Society next week on making it more of a light regimen for the quad. So I'm interested in learning more about that in addition to like some of these novel therapies creeping into the front in early relapses because what did we learn from our lymphoma drugs? You wanna give your best agents early on so hopefully that will translate into myeloma.
- Yeah, so you don't wanna lose the benefit or that opportunity. It's kind of like, I say it's like a checkers game. You're trying to plan your next move. Some people say chess, but I don't know how to play chess. Checkers is a little easier.
- Too complicated.
- What's your next move? So I think that's a really important message for people that are watching to share with your support groups and everybody. It's okay to get a second opinion, the reason we brought up this discussion was because we want people to get the best treatment for them, the right drug for the right patient at the right time. And sometimes people might be in an area where they don't have access to drugs, and so it's always okay to get that second opinion either virtual or in-person. Many places will do virtual consults now, and it's always okay to have a discussion with your doctor, nurse, or care team having that. And if your doctor or care partner doesn't want you to get a second opinion, then maybe you're not with the right person I'm sorry to say, we want you to feel confident and comfortable in your care team. We did have a question in the chat, are four drugs more toxic or have more side effects? And the answer is not necessarily. These studies are showing that very safely, these drugs can be paired, and they're also very effective at getting what we call that MRD negative, that 10-5 or 10-6 one or two in a million myeloma cells in the bone marrow. So you're not getting more side effects. And actually some of the studies in the frail groups, we're seeing they're stopping the three drugs probably because they're not working as well. So I think the data need to read out, but four drugs are probably better than three for everybody. So going back to the disease, again, this is BCAM, Blood Cancer Awareness Month, and we want to have the discussion about what kind of signs and symptoms of myeloma. So many of you know very well back and bone pain is a common hallmark presenting symptom. We've known that for years, and as you're getting older, what are the kind of things that we get, back and bone pain. So you're not always seeking healthcare. Other signs might be anemia and fatigue and those are kind of the most common things. Other things that are more subtle, numbness and tingling in your fingers or toes and just an overall feeling of not well, recurrent infections. In 2003, Dr. Durie had his earlier International Myeloma Working Group criteria for diagnosis and it included infections, recurrent infections, that got removed from the 2006 guidelines. But we all know that that is a sign of immune dysfunction, immune's not working as well. Going back to symptoms that relapse, Tiffany, what do you tell your patients to look at if you're going in remission, what's the kind of monitoring to expect and recommend like blood tests and how often they need to be seen?
- Yeah, so we see them if they're on maintenance usually every one to two months depending on if they're high risk, we're gonna see them more often. We generally will do whole body imaging once a month. I mean once a year, sorry.
- Everybody get a PET scan. Don't go to MDM.
- Once a year just to make sure that you're not having early bone disease that's progressing because that would definitely be something that we'd wanna catch early. But otherwise, that's generally the monitoring that we're doing. And then for bone marrow biopsies, depending on if they're MRD negative or not, we may get a bone marrow once a year. So it just kind of depends on the patient.
- Exactly, and so when we were talking about the monitoring, Donna, is there anything different than you might do in your institution with the monitoring? I think I get a lot of times like how often do you check for bone marrow for MRD status, how often do you do PET scan or whole body CAT scan imaging? Do you do it just when they feel tired or the blood numbers are going up a little bit? How often do you check?
- So we like to reevaluate once a year, and that will include the imaging. So typically a PET scan and a bone marrow biopsy I hate to say, but if someone's responding very well and sometimes we do, we do look at the MRD status, and if a patient has sustained MRD negativity, we might again dial back their maintenance therapy. Patients might be able to afford a break in therapy at that point. So we are looking at the bone marrow. Now if a patient, the caveat is if a patient has high risk disease, my monitoring is gonna be a little more frequently in those patients that have a very watchful eye on because they might have features that they might relapse sooner rather than later. So we're monitoring those patients very closely.
- Very closely, for sure. So more questions that are coming in, and we'll do our best to get to all of them. And remember, if we don't get to all the questions, the myeloma info line is there for you. 1-800-452-CURE I believe it is, and if not, I'll have one of my colleagues put it in the chat. I always forget if it's 432 or 452. I think it's 452. I said it enough so. So how do you know if you've progressed from myeloma to MGUS? And so most of the time, so the International Myeloma Working Group has criteria for diagnosis of myeloma, and it's SLiM CRAB is what we're looking at for a serum-free light chain that's capital lambda or difference in these ratios of greater than 100, the S is actually 60% or greater than the bone marrow biopsy. And the M is the MRI with greater than one lesion on MRI greater than five millimeters. And those are like, you might wanna start treatment sooner, but the hallmark older ones are the CRAB, high calcium in the blood, so the C is hypercalcemia, R is renal insufficiency or elevated kidney levels. That's the creatinine is your blood test you look at. And then anemia with a low hemoglobin, not from nutritional, not from bleeding or other causes, we always rule out other causes, or B is bone damage. And so CRAB is the criteria for diagnosis. If you have SLiM, it's recommended you start early treatment so that you don't get CRAB criteria. So when you're asking about the diagnosis of myeloma, it's really looking for that SLiM CRAB. But if you have the numbers that are going up, like your light chains keep going up every three months you're getting checked and the light chains keep getting up, that's what's really challenging for us as clinicians is how often do you test and what kind of testing do you do? And it's really important to just be aware of new fatigue, new back or bone pain, or any other symptoms. It's really the blood test oftentimes that we're looking for to make sure that you didn't progress. So as long as you're being monitored, and again if you have the low risk MGUS, IgG Kappa, IgG Lambda, that should not hopefully progress if your M protein's low. But just keep discussions open with your primary care team for sure. Is Revlimid enough for double hit high risk MRD myeloma, and I think they're talking about maintenance. Is it normal to have so much pain on Revlimid while in remission? Oh, who wants to take Anita's question.
- I can take it.
- Yeah, you do it.
- So I mean at our center for high risk disease, we'll usually do like a proteasome inhibitor and an IMiD as opposed to just doing Revlimid. I haven't seen a lot of pain with patients on Revlimid unless they already had some preexisting neuropathy, and now the neuropathy is worsening.
- Or pre-existing myeloma-related pain from the diagnosis.
- Exactly. But generally it's not necessarily from the Revlimid, we don't really see it that much unless there's something else going on.
- Lots of centers have access to pain management specialists, palliative specialists to help look at the pain because sometimes, for example, if it's nerve-related pain, there are medications like gabapentin or pregabalin, those two drugs might be helpful for neuropathy. There's also some pain medicine that you might have to be on depending on the type of pain that you develop. Revlimid shouldn't cause pain by itself, but have that discussion and share that symptom with your doctor. I'm gonna do the next question. Why do I know if I have neuropathy as I'm supposed to be tingling and numb in my fingers and toes? So lots of things can cause neuropathy, right? So it's a very common side effect of diabetes, vitamin B deficiency, B6 and B12, I'm always checking those blood levels to make sure that you're not low on those vitamins. Donna, what do you have to share about neuropathy in patients with MGUS or myeloma?
- So with myeloma, again, rule out other causes. So diabetes, vitamin deficiency, those things I can manage and that will get better. If it's caused, sometimes neuropathy is caused by myeloma. And so by treating the myeloma, that can improve. Most of the times, it's caused by the treatments we give. And so we try to best support patients, and unfortunately, I don't have that silver bullet where I can give you a pill and the neuropathy goes away. I wish we had that. But there are interventions and supportive care that we can offer patients to minimize the impact that patients are feeling from the neuropathy. So it's really important, why are you having the neuropathy, could there be other causes? And then how to best manage. We do have management strategies.
- Absolutely. So the next question is by Peggy. Hi Peggy. What is the preferred imaging for monitoring? So we know the International Myeloma Working Group guidelines for diagnosis of bone, say whole spine MRI to make sure you don't have lesions, PET CT scan or whole body low dose CAT scan to make sure you don't have active disease. But what do you do for somebody that's had a transplant or been treated? Who wants to take this one?
- I will. And I think sometimes it's institution-driven, so we like to do PET-
- And insurance.
- Yes, insurance-driven. But PET scans I think are our preferred method of imaging. Sometimes we do the whole body MRI scans as well. But routinely, we will do a PET.
- Exactly. So Jade says can you comment on the MRD blood test instead of bone marrow biopsy, the mass spec or EZM? So let's say somebody has a really good, blood looks good, the light chains look good, there's no signs of myeloma being active. What are some other tests instead of going in the bone marrow biopsy? Because those are painful.
- Yeah, I mean right now at our center, we just have the MRD via bone marrow. We won't have it via blood I think until it becomes more widely used. I think unfortunately, we're just gonna still have to use the bone marrow biopsies.
- Do you have anything you're using?
- Yeah, so no.
- We're not either.
- Because most of the next generation sequencing tests to detect very low levels of bone marrow have to go into that bone marrow space where those cells grow, that's the garden where all the myeloma cells grow and all the good cells and bad cells. So unfortunately, what we do is we try to make that bone marrow biopsy experience as good as possible by giving anesthetic before, a comfortable environment. We play music of your choice in our bone marrow biopsy suite. We can offer to have it done under interventional radiology if your insurance will provide it. But usually just a little bit of Ativan and some local sedation can really make it a more positive experience. And then telling yourself, why are we doing this test? Because we wanna learn about how your bone marrow remission is. You don't have to have it. Right now, outside of the context of a clinical trial, it's generally a nice to know test, are you MRD negative? But we don't need to know that information if everything looks good. In terms of the mass spectrometry, we're trying to get it at my institution, it's really, Mayo Clinic is doing the majority of those tests looking at the weighted proteins in your blood, and that's a really good test, but it's still not gonna be able to detect MRD negative as reliably as in the bone marrow. So sorry. One day we'll find a better test like the CLL people and the leukemia people use blood, but those cells go into the blood. So we're doing good. We have three minutes left. I'm gonna take an... It goes so fast, it always goes fast. My husband's blood studies have pointed to myeloma, but everything looks great and it's so frustrating. So that's definitely very frustrating when you're having multiple bone marrow biopsies, PET scans, no malignancies, but the blood looks like myeloma. And so that's exactly a good time to have that discussion with the care team. Why don't you think this is myeloma? What do we absolutely have to do to accurately diagnose this? Tiffany, do you have any suggestions of how you can talk with the caregiver?
- Yeah, I mean I would just sit down and ask them questions like, so if these labs are indicating myeloma, then why aren't these other tests positive, and what does that mean?
- And do I need treatment?
- And do I need treatment or could I just be watched? And maybe ask like is this MGUS versus myeloma? What are the different differentials or different diagnoses that the care team is thinking about?
- And then also a second opinion or a third opinion.
- Try not to get too many though, Donna.
- Fourth opinion.
- Everybody has their own ideas.
- I'm in New York City, you can get an opinion every five blocks.
- That's a great point. So let's do one more question. Hi Terry, can you comment on masking? Many patients I speak to are getting frequent infections and telling me they're not masking. To encourage masking to decrease infections, what are the current recommendations? So I'll like to hear what you have to say.
- Yeah, I mean right now, like especially when Covid numbers were up, I was encouraging our patients to mask when they were out in public. So I think you have to look at like what the Covid numbers are doing, what the flu numbers are doing.
- In your area.
- In your area. And really kind of be cognizant of that because you don't wanna get sick if you can avoid it. So if putting on a mask may offer some degree of protection when you're out in public, it's not gonna hurt you to mask.
- And I still mask in the clinic to protect my patients. But again, there's differing opinions.
- Yeah, and remember, patients with myeloma are immunocompromised, and on top of that, we are giving you treatments that make you even more immunocompromised. Wearing a mask, especially in high-risk situations like crowds or airplanes, can't do you any harm, can only give you maybe a little benefit.
- Absolutely. Wow, this has been great. I always say these things maybe not flew by for you on the other end of this call, but for the three of us here, it's just been an honor to take the time to answer your questions. Really and truly, we really appreciate each and every one of you. This has been great. Donna, thank you for joining us. Tiffany, thank you for running out of clinic and driving all the way down here to join us as well. Our meeting doesn't start till tomorrow. And I'd also like to take a final moment to thank this year's Blood Cancer Awareness Month sponsors, The Binding Site, Bristol Myers Squibb, GSK, Johnson and Johnson, Karyopharm Therapeutics, Pfizer, Regeneron, Sanofi, and Sevilla. I think that's it. Until next time, thank you for joining us, and have a great rest of your day.