Dr. Joseph Mikhael:
Hey, everybody. Welcome to our International Myeloma Foundation Facebook Live today. Live, indeed, from Boca Raton, Florida, where we are hosting our first Patient and Family Seminar of the year. This is Dr. Joseph Mikhael here, affectionately known as Dr. Joe, and I will serve as a host today. But with me is my partner in crime and dear friend, Sylvia Dsouza. I'm going to ask Sylvia to introduce herself. Not that they don't know you already, but in case they don't know you, Sylvia.
Sylvia Dsouza:
Yeah. Thank you, Dr. Joe. Sylvia Dsouza, Vice President for Development for the International Myeloma Foundation. It's really an honor and a privilege to be here with you, Dr. Joe. And to be doing Facebook Live and getting real time content to our viewers.
Dr. Joseph Mikhael:
Wonderful. As you know, at the IMF we are here to fulfill our vision, which is where every myeloma patient can live life to the fullest unburdened by the disease. And we try to achieve that in multiple ways, through research, through education, through support, through advocacy. And one of our sentinel, if not flagship, programs that we have at the IMF, that was captured so much by one of our founders, Susie Novis Durie, who really wanted patients to be able to be informed and educated and empowered to speak to their doctors, is our patient family seminars.
Our Patient Family Seminars are two-day programs that we host four times a year. We typically have them in Boca Raton, Florida, where we are today, as well as in our hometown in Los Angeles, California. Also, we rotate to other cities and this year we're going to be in Philadelphia and in Chicago.So if you're anywhere near those cities, we'll provide the dates for you. We want you to join us at our Patient Family Seminar. And at these two day events, we really try to do a deep dive into multiple myeloma for both our patients and their care partners and their providers.
So, what we do is we start midday on the Friday, we run all Friday afternoon and then all day Saturday, and we have sessions that we'll cover multiple areas, and I'll highlight a few of them over the next couple of minutes. And as we do that, I want you to tell us who you are. In the comments section drop in where you're coming from. Typically, with our Facebook Lives, not only do we have people from all over the US, we go international, it is the I in IMF, after all, the International Myeloma Foundation. So, tell us if you're coming from my home country of Canada, or tell us if you're coming from Germany, or Croatia, or Brazil, or wherever it is that you're coming from. We want to hear from it.
Not only so, we would love your questions. Because remember, this Facebook Live is designed to help answer your question. So, what we'll do is I'll spend about this first 10 minutes or so telling you about some of the highlights of our Patient Family Seminar, and then we want you to feed the questions. And I have the question queen to my right here, Sylvia Dsouza, whom you've just met, and she will share some of those questions. And then, at the end, Sylvia is going to wrap us off and kick us off with a wonderful call to action.
On the subject of action, March is Myeloma Action Month. I assume you know that already. We used to call it Myeloma Awareness month, but we know that awareness is one step. We believe action is a deeper step. And so, we now call it Myeloma Action Month. And if you haven't learned much about Myeloma Action Month, no worries, we're still in March, we still have half the month left and lots of things to do. So, please go to myeloma.org, where you learn all about the IMF, but specifically myelomaactionmonth.org, where we can give you lots of insight as to what we're doing this month and perhaps, more importantly, what you can do this month. What is your, what we're calling, Myeloma Milestone. We've hit so many milestones over the last 35 years.
In a few months from now, the IMF is going to celebrate its 35th anniversary. I mean, Sylvia and I were in diapers back then, but nonetheless 35 years of the IMF and we are wanting people to share their Myeloma Milestone. Let me give you an example of one that I shared this morning, which was running for the cure, that I ran for the cure today because Sylvia hosted a marvelous event this morning where we had 200 people here in Boca Raton run, or walk, a 5K loop here to raise money for myeloma research. And we know that we have hit incredible milestones in myeloma research over the last 35 years and we want to come closer to the cure and we want you to join us in doing that. So, go to myelomaactionmonth.org, learn about all the things that you can do.
All right. Before we dive into questions, let me just give you a few tantalizing tips and highlights from the Patient and Family Seminar here. One, because we know some of you were not physically able to be here, but hopefully to induce you and to encourage you to be able to attend a Patient Family Seminar or another in-person or virtual event that the IMF hosts. I mentioned that we started yesterday afternoon and we start with the hot topics in myeloma. This is new to us at the Patient Family Seminar over this last year, where I try to put together, what is really hot in myeloma that is so new I can't even create slides for it because it's so brand new?
Very quickly I talked about two things, a critical trial that was recently conducted and published, the AQUILA trial, that was looking at treating patients with high-risk smoldering multiple myeloma that is really sending some shock waves into the myeloma community about how we may be able to intervene earlier in myeloma. One of the great objectives we have at the IMF is to facilitate an early and an accurate diagnosis so that people can be caught before their bones break, before their kidneys are damaged. And this study was a part of that strategy and showed that single agent Darzalex or Daratumumab may have a prolific impact in this area.
Area number two was what we call Down with Dex. We know that dexamethasone is important and it's a part of just about every chemotherapy regimen on the planet. Years ago, when we didn't have a lot of great drugs, we really relied on dexamethasone. But now, we can rely less on it, and we've seen recent publications and really excellent work helping us see that we can reduce the dexamethasone. And as a patient or as a care partner, you probably know what this is like, that although we love dex because it helps those chemo regimens, we kind of hate dex too because it causes a lot of side effects, difficulty sleeping, it affects our mood, our blood pressure, our blood sugar, so many other things. And we think we can live in a world with much less dex.
We talked about myeloma 101 yesterday and gave people a refresher course in what myeloma was. Teresa Miceli, who leads our info line at the IMF and is a nurse at Mayo Clinic, did a fantastic overview of shared decision making. And I'm always fascinated by the work of our nurse leadership board and what they've achieved. And this has been one of their sentinel projects, and one of their sentinel messages to the community is that it's not about a doctor telling you what to do, it's about being involved in that decision and how you can be empowered to understand that and together have a shared decision making process. We also talked about clinical trials yesterday and their importance, their significance, how we can increase participation in trials and how people can get involved in trials.
And by the way, if you're interested in learning more about clinical trials, join us next Thursday, March the 20th, for our Living Well series where we will talk about clinical trials. And I'll be joined by Brian McMahon from SparkCures, whom the IMF has partnered with, to build and maintain a search engine on the IMF website to have individuals be able to find clinical trials. And then, lastly, I'm going to tell us that today, Saturday, started off a little early, Sylvia. I think Sylvia was at the race line at 4:00 AM, and coming from California, that's really 1:00 AM, a little disturbing, but she made it nonetheless. And at 6:00 AM, people were gathering, and by 7:00 AM we had those 200 individuals do the run/walk here, our Miracles for Myeloma. Just incredible to see that kind of commitment.
I think of a couple that I met this morning who had never heard about myeloma till this week. They saw that a 5K was going on. They came up from Sarasota, they got embraced by the myeloma community, ran the race with us and are now supporters of research in multiple myeloma. It was really a touching experience to see patients, care partners, and even families of members who we've lost myeloma to be there today to run and walk with us. It was epic. And then, we had a session this morning where we talked about the future of multiple myeloma. I asked Dr. Rafat Abonour, from Indiana University, to get out his crystal ball and predict what was to come in the future. And it was exciting because we were genuinely able to talk about things like cure, being able to talk about bringing new therapies to frontline settings and maybe even someday not having to do autologous stem cell transplants.
And then, lastly, we just had a fantastic breakout session. One of the things we've learned is that we want to tailor our education to everyone's journey. And we had a breakout session with newly diagnosed and relapsed multiple myeloma. Dr. Josh Richter from Mount Sinai, Dr. Krina Patel from MD Anderson led those two sessions with a tremendous amount of questions being asked, a lot of interactivity with our crowd. Later this afternoon we're going to hear from Sylvia Dsouza a little bit more about how you can engage more with the IMF. We're going to have outstanding nurse leadership board talk by Beth Finley-Oliver talking to us about how we can manage our side effects. I'll talk a little bit about health disparities. We'll have an opportunity to have a Q&A.
And we'll also have our second breakout session where we have a breakout session for patients only and for care partners only. Sometimes we can work so hard to care for the one who has myeloma, we may not care for ourselves. And that is another enduring legacy of the IMF and something we believe in. So, there you have it. That is a PFS in a nutshell. Hopefully it's enough to get you ingratiated to the concept and wanting to attend a Patient Family Seminar, make you a little jealous that you might not be here. The weather, of course, is delicious here in Boca Raton as well. But we're very grateful to be here together. Now, let's get to the questions. Dr. Dsouza, bring them on.
Sylvia Dsouza:
Dr. Joe, I mean, you couldn't have just done it in a nutshell any better. You have summarized the day and a half and still another half a day to go in like... What? The last 10 minutes. It's incredible. Thank you so much for being here.
Dr. Joseph Mikhael:
Pleasure.
Sylvia Dsouza:
Thank you for doing this. But before we go on to incredible number of questions that's coming through our comments section, I do want to give a shout-out to our sponsors for March Myeloma Action Month. Thank you so much Amgen, Binding Site, Bristol Myers Squibb, GSK, Johnson, & Johnson, Karyopharm, Arcelex kite, Pfizer, Regeneron and Sanofi. Thank you for making this possible during this month. We have a lot of questions, Dr. Joe.
Dr. Joseph Mikhael:
All right. Bring them.
Sylvia Dsouza:
And I know we have the next 15 minutes or so. So, sorry that we may not be able to get to anything in all the questions, but we will try to respond to you as best as we can. The first one here is from Rose Caputo. Rose asks, SCT was a frontline treatment and now it seems CAR T is a very early therapy. Are there therapies that are promising after CAR T?
Dr. Joseph Mikhael:
Fantastic question. And as you said, Sylvia, we'll try to answer as many as we can, but don't worry, please keep sending in those questions. We have the opportunity to answer questions in other Facebook Lives, on videos that we do, in other forums that we have. And of course, if you ever want your question asked more personally, feel free to reach out to our info line that you can reach out to schedule a phone call or do it online. And we also have another friend, if you've not met them, who is Myelo, our chatbot that we've created ourselves at the IMF. And Myelo, of course, is available 24/7.
Rose asks a really good question, Sylvia, about stem cell transplant and how it has been, really, a centerpiece of treatment for patients who are eligible for it in multiple myeloma. And we had a great chat with Dr. Abonour this morning, and it's going to be one of the controversial topics that we discussed with Dr. Richter and Patel later today that, could it be that we're replacing transplant? Could it be that CAR T-cell therapy is going to come earlier on? And those clinical trials are being done and we anticipate that that may happen. But of course, we need to see the evidence for it. We always say you're the champ until someone knocks you out.
But Rose, be assured there is a lot after CAR T-cell therapy. In fact, Dr. Patel was just talking about her experience of giving bispecific antibodies after CAR T-cell therapy and how effective that can be. Not only so, we have another wave of CAR T and bispecific antibodies that are being developed, sort of the CAR T 202 and bispecifics 202. And even yet, other molecules, cell mods and newer targets that we use in multiple myeloma. So, although we think of a major step forward with CAR T, there are many more steps coming.
Sylvia Dsouza:
Wonderful. Thank you so much, Dr. Joe. Lots of great questions out here and we'll try to get to as many as we can. But I have a question here from Marilyn Friedman. What would be the effectiveness of Darzalex Faspro without also using Revlimid as maintenance therapy?
Dr. Joseph Mikhael:
That's a really good question. For a long time we've been giving Revlimid or lenalidomide maintenance. We use the word maintenance typically after someone has had an autologous stem cell transplant to maintain their emission that has been achieved by that initial therapy and transplant. And for many years we've used Revlimid alone because it clearly showed a benefit not only to keep people in remission longer, but actually to keep people alive longer. The overall survival was there. But now we're using more and more studies and evaluating the opportunity to add another drug to it. Sometimes we may add Velcade or even Kyprolis or Carfilzomib to it, but there's been increasing evidence to add Darzalex or Daratumumab to it to keep patients in remission for longer. That is a legitimate strategy.
But what's being asked here is, can we use Darzalex alone? And although we don't have a lot of studies that have evaluated, we have a few. We know that Darzalex alone is absolutely better than nothing. We also know that there are about a third of patients who, for various reasons, can't stay on Revlimid because of side effects or other issues. And often, we maintain those patients on Darzalex and we're getting a lot more experience with it. So, that's a long-winded way of saying yes, it is a legitimate option. Obviously, this needs to be discussed with your provider because every patient is unique and different. But it is a strategy that we're often using. We typically combine it with something else. But if that's something else, like Revlimid has to be dropped, we often do use Darzalex alone.
Sylvia Dsouza:
Thank you. Staying on the same thread as for maintenance therapy, I have another question from Anita. Can you restart maintenance after being off for six months, ultra high-risk MM? Any benefit to restarting or waiting for relapse?
Dr. Joseph Mikhael:
Wow. That's a really good question. A couple of things there. Typically, we continue maintenance until someone's disease wakes up. That's the general strategy. But sometimes, as I said before, side effects, other things, other reasons we sometimes have to stop. There are other individuals, usually with lower risk myeloma, that after they've been on for many years, we may decide just to stop because it's been over four or over five years. Obviously, this specific circumstance is hard to know all of the details. But when someone has ultra high-risk myeloma, as was discussed, which just typically means the myeloma has more horsepower, as I call, it has a greater ability to come back more quickly. We typically try not to keep people off the maintenance therapy for too long.
If in those six months there's been no relapse, generally speaking we would think about going back to maintenance with two drugs. But of course, every patient may be different, especially if they've had difficulties with that. And there may be some situations where we'll say, let's just leave you on nothing for now, but keep a very close eye to see any evidence of when the disease wakes up. Because we know, sadly, ultra high-risk myeloma tends to come back more quickly. But of course, there's always exceptions to the rule. I have had some patients who had to come off maintenance and have high risk myeloma and actually stayed off maintenance for a long time, in remission a long time. So, that can be discussed. But typically, I think the short answer is we would want people to be on continuous therapy when they have high risk myeloma.
Sylvia Dsouza:
Thank you, Dr. Joe. And I promise my voice is typically not this husky, but it was all from the cheering that I did this morning for the 200 people to ensure they got to the finish line. I have a question here from CJ. Does Kyprolis offer the same degree of effectiveness as Velcade? Thinking of switching due to peripheral neuropathy, but have read that the side effects of Kyprolis include heart issues.
Dr. Joseph Mikhael:
Yeah. It's a really good question. These two drugs, Velcade and Kyprolis, the generic names are Bortezomib and Carfilzomib, I know there's a lot of words to learn there, are part of a family of drugs called proteasome inhibitors. And they've been around for many, many years. They're both very effective. They're both very much incorporated into the treatments that we give. They work similarly, but they have different side effects. As was noted, the Velcade is... It can cause what's called peripheral neuropathy, which typically numbness, tingling, maybe even pain in the fingertips and on the soles of one's feet. And when that happens, we typically do want to stop the Velcade. I would think that would be an important consideration here.
Sometimes we may just stop the Velcade and not replace it with something else. But if someone is requiring ongoing treatment with that proteasome inhibitor class, we have a few options. We sometimes may use an oral drug called Ixazomib or Ninlaro, or we may use, as was asked here, Kyprolis or Carfilzomib. Kyprolis or Carfilzomib is a very potent drug in this class and I use it very regularly in my practice, in my clinic, and it can be used carefully when used carefully. There are some side effects from it, but I will say that that's really in a small number of patients, it's really about 5% or less of patients who have an issue.
And one of those issues, as was noted, can be the heart. It does seem to boost up people's blood pressure a little bit. If someone has preexisting heart failure, it can slightly worsen it. But we have learned over time, when we give the drug at a lower dose to begin with, we give it once weekly, we monitor patients' blood pressure and cardiac status, that for the vast majority of patients they can go on Kyprolis without a lot of complication. So again, I would encourage, CJ, discuss this with your doctor and your team, but I would say if you are experiencing peripheral neuropathy with Velcade, it's a good idea to go off of Velcade because continuing it will only worsen that neuropathy.
Sylvia Dsouza:
Thank you, Dr. Joe. Switching gears slightly a little bit. I know dex always comes up in a lot of our conversations. One of our viewers, Karen Marlin, is asking, what can be done to prevent weight gain when on dex?
Dr. Joseph Mikhael:
Yeah. I noted briefly earlier, dexamethasone is the drug we love and we hate. We love it because it boosts the effect of just about every treatment we give, and sometimes it gives people energy, makes them feel good, it helps sometimes with nausea, it can sometimes help with pain, and sometimes it can help reduce the potential of side effects from a chemotherapy or an infusion or administration reaction. The problem with dex though, especially over time, is that it can cause a lot of other side effects. And one of them is it can stimulate an appetite and it can cause us to retain fluid and it actually causes us to gain weight. There's no perfect, if you will, antidote to it, as much as I commented with Down with Dex movement, to start looking at, can we taper down the dose?
Typically, people are started on dexamethasone either 20 or 40 milligrams weekly. And we have found, in the Down with Dex, studies that if we can use that for the first month or two, that's where the greatest benefit is, and then often we can start tapering it. So in our experience, by month two we start to reduce the dose, and that often people completely discontinued their dexamethasone by the fifth or sixth month. And that, very often, can help with things like weight gain by preventing it or when people come off the dex, often they're able to shed some of that weight that they may have accumulated in time. So, I would discuss that with your doctor and to look at options of tapering down the dexamethasone.
Sylvia Dsouza:
Thank you. We do have a few questions that's related to the current funding cuts, et cetera. We'll get to that. We have a few of you who have asked that, coming to it in a second. But in the meantime, I do have a guest who's asking about if they are in remission, can they still have bone pain?
Dr. Joseph Mikhael:
That's a really good question. When we talk about remission in myeloma, we refer to the fact that we've, in a sense, controlled the disease. We've reduced the burden of disease. Myeloma is always complicated. I sometimes call it a crime scene because it's not one piece of evidence, it's lots of pieces of evidence to tell you the story. It may be the M spike, maybe the light chain, the X-rays are important, the bone marrow is important, other blood work's important. Sometimes we do PET scans and things like that. But remission means we've gotten the disease under control. And in general, remission means less pain, less fatigue, less discomfort in general.
However, when it comes to the bones, it is possible that the initial damage that was caused to the bones by the myeloma, some of it, sadly, can remain permanent. And so, this is a very important discussion with the healthcare team to decide, is the pain that someone's experiencing a sign that maybe the myeloma is waking up again or is not fully controlled? Or could it be some of the unfortunate permanent damage? Although, more often than not, we can reduce the majority of that that someone experienced because of the initial damage to their bone. So, if someone has broken a bone because of myeloma and we treat their myeloma, we give them a bone strengthening drug, very often the pain will get better, the integrity of that bone will improve, but there still may be some residual pain. That pain description, the volume of it, the type is really important to discuss with the team.
Sylvia Dsouza:
Thank you, Dr. Joe. Staying on the same vein, we have Thomas, who wants to know, if T-cells get tired, what remedian is available to counteract and resume effective treatment?
Dr. Joseph Mikhael:
Yeah. It's a great point. For those who may not be familiar, and we've talked a lot about it here at the Patient Family Seminar, come to another Patient Family Seminar and you can learn more about it, but is T-cell therapy. T-cells are a form of a white cell, they're like a soldier cell in your body. And we've developed multiple ways of engaging T-cells. One way is we can actually take T-cells out of you and train them as it were to recognize your myeloma, put a receptor on them. That's why we call it CAR T, or chimeric antigen receptor, and give them back to patients. Sometimes we can give people what's called a bi-specific antibody or a drug that hooks onto their myeloma and a local T-cell that's already in their body and engage that T-cell or activate the T-cell to say, hey, T-cell, here's the myeloma. You go and attack it right now.
And these therapies are incredibly effective and we're seeing responses and duration of responses we've never seen before in multiple myeloma. But the reality is they're not perfect, and often those T-cells can, with time, be less effective. And in CAR T-cell therapy, I said to the group here at the Patient Family Seminar, that sometimes, if you will, the cars run out of gas. I'm not trying to be funny about it. I'm just trying to get us thinking about, unfortunately, even though we train these T-cells to go after the myeloma, they themselves can run out of steam.
And so, we're evaluating, and it's a great area of research of, what can we do? Can we give people a T-cell boost? Can we give them another drug that invigorates their T-cell? I was at a myeloma conference where one speaker said, "This is like the espresso to the T-cells that maybe we can give them a little bit more energy." And those are the kinds of things that we're evaluating. But for now, unfortunately, when someone relapses after a CAR T-cell therapy bi-specific, we typically now look to another treatment. But the good news, on the other hand, is that often we can go back to another CAR or we can go back to another bi-specific, or vice versa, in that situation.
Sylvia Dsouza:
Thank you. Obviously, there's still a lot of questions coming, and given the amount of time that we have, we may not be able to get to anything. But a reminder, please continue to reach out to us, call our info line, get connected with the International Myeloma Foundation. We are here to support you. Time is, unfortunately, limited. But we will answer this burning question from a lot of our viewers. Please answer my question about research and trial funding being cut by the current administration. Many people in the myeloma groups are concerned. How is it going to affect us?
Dr. Joseph Mikhael:
Right. Yeah. It's a great question and one that we addressed at length here at the Patient Family Seminar. Our time is quick so I'll have to be brief. I would approach this in such a way is that it reminds us of the importance of myeloma research. We are more than ever getting closer to the cure for myeloma and we want to support that research that is done by institutions across the world. And we, at the IMF, serve a critical role in facilitating a lot of that research, in particular through our International Myeloma working group, which is the 350 myeloma experts around the world.
We are concerned about the threat for cuts and we want people, as one of our arms, as I've mentioned to you, our pillars is advocacy, to reach out and advocate to our elected officials about the importance of that research because we want to continue it, we want to maintain it. Thankfully, we see great research still going on until today, we want it to continue and we believe it can with the right support from our communities.
Sylvia Dsouza:
Thank you, Dr. Joe. Please also follow along in the comment section. We are adding about our efforts to do advocacy-related work. So, please follow along. There is a question here from Lee about, how common is a secondary or even tertiary hematological malignancy, such as Hodgkin's lymphoma or T-cell large granular, to develop during the smoldering phase of myeloma?
Dr. Joseph Mikhael:
During the smoldering phase of myeloma we have less evidence of that exact number, but we do know that if you look at a myeloma patient in general, on average, over the course of their life, they'll have about a 5% risk of developing another cancer. And there's lots of reasons for that. It may be that their inherent genetics puts them at risk, some of the treatment that they've had or what I call the incidentaloma, the fact that they are being able to be tested and be looked for.
So, it's important that our patients ensure that they get their regular screening with colonoscopies, that they get their breast mammography, those kinds of things. We're still trying to understand that exact incidence and ways in which we can reduce it. And I know our time is almost gone, so I'll turn it out to you, Sylvia, to kick us off as we end this Facebook Live. But as we've said, we still have another 15 days of Myeloma Action Month for you to take myeloma action at myelomaactionmonth.org.
Sylvia Dsouza:
Thank you so much, Dr. Joe. Again, myeloma is... We don't have a cure for myeloma just yet. There is a lot of work that the International Myeloma Foundation is doing. We are the forefront of the battle. Continue to stay engaged. Once again, I want to thank our sponsors for March Myeloma Action Month, Amgen, Binding Site, Bristol Myers Squibb, GSK, Johnson & Johnson, Karyopharm, Arcelex Kite, Pfizer, Regeneron and Sanofi. And as Dr. Joe mentioned this morning, 200 people in person ran to find a cure for myeloma. We are accelerating our efforts to do anything and everything we can to get as close as possible. Join us in this fight.
There's a ton of events that's happening at the International Myeloma Foundation. Please go to events.myeloma.org to find out how you can get engaged, how you can be involved. Reach out to me, reach out to anybody at the International Myeloma Foundation. We'll be grateful and appreciative to hear from you. We would love to find a way to get you engaged and get you involved. Thank you for listening. Thank you for tuning in.
