Hello, everybody. Welcome to the Facebook Live event, and I'm Beth Faiman. I'm here as a representative from the International Myeloma Foundation Nurse Leadership Board, and I'm thrilled to be here so you can ask me anything you want about myeloma. I'm looking, I have two spectators so far, and that just might be me and me. Hopefully more people will come in, looking to see where everybody will be coming in from.

Let's see. Oh, we have some people coming in already. Excellent. Great. Welcome, those of you that are joining in. Love to hear where everybody's from.
Let's see. All right. Great. Here we go. Trying to see where the people are coming in. I see some popups, but I don't see everybody, so let me just check my view here to make sure I'm looking at the right place.

Thank you all, those that are joining already. Excellent. Just looking. Here we go. All right. Oh, we're up to 16.

There's Jane from Carolina. Ooh, UK. Wonderful. Anita, that's my aunt's name. Hi, Anita from Maryland. Congratulations on your BMT five weeks ago.
I'm thrilled that you feel well enough to spend time with us. That's exciting. There we go. Perfect. I'm looking at my phone here. This is the weirdest thing.
I'm looking at my phone as I'm looking at you all coming in, so thank you so much. And guess who's watching? My husband's watching. Matthew Faiman, hi. And I just got a heart, so thank you. Denise is from Houston.

Oh, this is so fun. Oh my gosh, Mimi from Mechanicsburg. Ooh, Alana from Phoenix, Arizona. I just saw you in Dallas, so thank you. Oh boy, this is so fun.
Megan Kelly from Portland, Maine. Well, gosh, this is so exciting. Thank you so much for taking the time to join us. I know technology can be kind of challenging for some of us, and despite the amount of time that we've been going through, the pandemic, it just doesn't seem to be ending, so I really love the ability to rely back on this. So again, welcome to this Facebook Live event, Ask Me Anything About Multiple Myeloma, and this is during Blood Cancer Awareness Month.
For those of you who don't know me, my name is Beth Faiman. I am a nurse practitioner from Cleveland, Ohio. I've worked at the Cleveland Clinic for over, almost 29 ... I just had my 29th anniversary, so almost 30 years, and I'm a founding member of the International Myeloma Foundation Nurse Leadership Board, that was founded in 2006, and I live in Cleveland, Ohio. I'd like to just take a quick moment and start by sharing about Blood Cancer Awareness Month.
So September is Blood Cancer Awareness month, and it's a time where we shed a light on multiple myeloma and other blood cancers, and raise awareness within the bladder cancer community. Throughout this month, the International Myeloma Foundation will share information regarding advocacy, myeloma research, education, support, and advocacy, and we need your help too to raise awareness for this disease. You're joining in so you know how super important it is. Please visit knowmyeloma.org, that's K-N-O-Wmyeloma.org to learn how you can get involved. And so today, I'm hosting this Ask Me Anything About Multiple Myeloma, and taking questions from the chat.

For those of you who ask my favorite questions, I am going to ask that you type your name in the chat, and my friends at the International Myeloma Foundation are going to send you something cool, hopefully. We have these #kNOwMyeloma, so it's K-N-O-W Myeloma, which is capitalized, N-O, so no myeloma, T-shirts, hats, or laptop cases. So if I mentioned that one of your questions is my favorite to answer, please send a message to the IMF through the Facebook Messenger, and they'll send you a limited Blood Cancer Awareness Month merchandise. Also, if you'd like to donate to the IMF, 'cause I guess we have to pay for these T-shirts, there will be a link posted in the chat. Again, the important thing is to raise awareness so that people don't keep calling myeloma melanoma.
Melanoma is important as well, but myeloma is important to all of us of us. Just a couple of other things, Dr. Joe Mikhael, who's a dear friend and colleague of mine, had a Facebook Live event recently, and in the future events, my friend, Ilana Kenville, who is joining us tonight from Phoenix, Arizona, will be presenting on September 19th at 4:00 PM Pacific Standard Time on How to Learn to Fundraise for the Cure, and then on September 26th at 4:00 PM Pacific Standard Time, join the IMF Director of Public Policy and Advocacy, Danielle Doheny, for a special Know Myeloma Advocacy question and answer. So, all right. Let's get started. Okay.

Oh, hi, Peggy. I did see you yesterday virtually, of course, as well, so thanks for joining in. So I do have one question to start with. The first question is, "Would you like to say multiple myeloma is like a puzzle?" So that would be from my husband, so Matthew, thank you for kicking this off.

I wanted to just take a moment to say one of the most common questions I get is, "When I'm diagnosed with myeloma, what do I tell my family?" It's an abnormal protein that your body's making, that can harm your organs, but more importantly, I always describe it like a puzzle. There's so many different pieces to put together from blood work to lab work, to imaging tests, and to the genetic information that we gain from all of those tests. Then, we work together, as specialists, to kind of find the best treatment that might be right for you. So when I describe myeloma, yes, I do describe it as a puzzle to people, but once you get those pieces together, then many people can have a long, nice remission and enjoy their quality and quantity of life.

So thank you for kicking us off. So I'm going back on my little phone here, and I should have gotten my reading glasses and I didn't, but I can still go okay. How about this for life? Okay, Anita said, "How long is remission after the second BMT?" That's an excellent question, Anita.

So Anita, the length of remission from the second bone marrow transplant depends on if you had a long remission from the first one, so we take into account the genetics of your cancer on the bone marrow biopsy. They usually do a test called FISH, which FISH is out for the high risk features, such as deletion of chromosome P17 or gain of a chromosome 1q. So if you have one, two or more of those genetic features, then it might be a shorter remission, but it still doesn't mean that if you have those features, you still can't have a nice, long remission. So it really depends on how fit you were, how long you've had myeloma, and how long the remission was from your first transplant. Now, if you had a transplant, and then a planned second one, like back-to-back, there are some studies from the early 2000's which shows that patients can get nice, long, durable remissions, and so that's still a treatment that was based on what we call the Total Therapy approach.

That's a treatment that is very effective in some people. So I would ask your healthcare professional, your doctor, your nurse, and your nurse practitioner for advice as to how long they expect that remission, but for many people, we can get anywhere from three months to three years, plus from that second remission, depending on whether or not we do maintenance, so I can't answer, especially your specific situation, but we do expect a durable remission because we put you through that therapy. So your doctor must have thought that it was going to work for any length of time, and so I'm hopeful that you get a nice, long remission, and if you join me 10 years from now, you'll still be in remission. So let me go back, and there's my buddy. Hi, Steve Weinstein.

We just were emailing each other. Thank you for your helpful tips. We have at Alberta, Canada. Oh my gosh, I love seeing all these locations. Going down, we have ... I just saw another question.

Okay. International Myeloma Foundation says, "Call us. We're here for you." They have the info line. I forgot the 1-800-452-CURE, or is it 432-CURE? That link is in the chat, and I'm sure you'll find it on the website.

Okay. So Jason said, "What is the role of supportive care including palliative care in myeloma treatment and improving the quality of life?" Boy, this is a great question. So, can I say it is one of my favorite questions too? The role of supportive care is super important in myeloma.

So the drugs that we give have certain side effects, and so we know from clinical research what side effects to expect. So for example, if you're a newly diagnosed patient with myeloma, and we recommend to be treated with, let's say Revlimid pills, we know to expect that you're at risk for blood clots, we're at risk for lowering blood counts, and you're at risk for some sort of infection, and of course, we worry about reproductive potential, and because it was a cousin to thalidomide, that caused birth defects in the 1960's, and so that's why there's a lot of safety measures with Revlimid, but anyhow, so those side effects and symptoms of the disease need to be managed, because if you're having side effects and poor symptoms, you're not going to stay on a medicine. And what do I like to say? Drugs don't work if people don't take them. So talk to your healthcare provider if you're having a side effect of the medication or a symptom from the myeloma that's affecting your quality of life.

Don't sit silent, and then quietly suffer because it's really not good for you, and it's not good for us if we learn that you were having pain and didn't share that with us. That is really important to have that communication. I also help create with the International Myeloma Foundation, what's called a Patient Discussion Tool. So you can go on myeloma.org and click on Resources, and you can print out this discussion tool, and it'll give you 10 questions to talk to your healthcare provider about what's right for you in terms of treatment, and also an area to fill in some specific questions, not only about the treatment, but about the disease itself, so thank you for asking that. All right, "How do you find doctors?"

This is from Jane Blasco. "How do you find doctors for treatment who are associated with the International Myeloma Foundation?" So that's a great question. So the info line is there for you. So it's the ...

I'm not going to give the wrong phone number now. I'm going to dial the myeloma info line. I can't remember. I can never remember if it's 452 or 432-CURE, so I want to give you the right number and phone number, myeloma.org, and there's a group of really nice info line people that are always there to help. 1-800-452-CURE.

It just popped up in my screen. It's like the universe is trying to tell me the right phone number. U.S. and Canada, 1-800-452-CURE, which is 2873, or worldwide is 1-818-487-7455. So there you have it. And so Carol Trebisovsky is watching this, my mom.

Hi, mom, and Beth Finley-Oliver's watching. I just saw you. Peggy, "Once you no longer have active disease, will new bone damage from myeloma disease, as long as disease isn't active? Will bone damage form from myeloma?" I think that's what ... I should have gotten my reading glasses.
Sorry, Peggy. I know what you mean, though. So the answer is yes, you can regenerate bone. So we know a lot about myeloma bone disease, so what happens when myeloma is active in one's body, you have these things ... All of us have them called osteoclasts.

Their job is to nibble away and rebuild bone, and osteoblasts are the bone rebuilders. So the osteoblasts and the osteoclasts are no longer in balance When you have myeloma. Those osteoclasts look like the scrubbing bubbles guys in the commercial, the ones that clean out the drain, and that's what they're doing to your bone. We give medication called bone-modifying agents. The International Myeloma Working Group recommends that everybody with newly diagnosed myeloma should be on either zoledronic acid, or denosumab, or pamidronate monthly for at least a year.

I did a Living Well talk in November of last year with Dr. Jens Hillengass from Roswell Park, so you can go back online and rewatch that if you want to learn more about myeloma bone disease, but he does a great overview and is very passionate about bone disease. But to answer your question, so not only are we rebuilding bone from going on those bone strengtheners, which live in your body for many, many years, but we're also allowing the normal, healthy bone remodelating properties to go rebuild bone when the myeloma cells are no longer attacking the bone. So better disease control, drugs to simulate bone growth, and then don't forget about the important role of calcium and vitamin D. You need calcium and vitamin D to build healthy cancellous bone. So for a majority of people who get their induction treatment after their diagnosis, and go into remission, and get the bone builder drugs, weight bearing exercise is also important, calcium and vitamin D.

Those building blocks can really help you to strengthen your bones and reduce your chance of fracture, or what we call skeletal related events. Okay. So thank you for asking another one of my favorite questions. Boy, the myeloma people are going to be like, "Oh, she said that was all of her favorite questions." You know what?

The thing about it is, is that for over 20 years, I've been managing myeloma, and I just love to hear the interest about people like you who are willing to take charge of their health, take control of their health, and become stronger and live well longer. So reiterating things about healthy bone modeling and living well is so important to me, as well as the importance of supportive care. All right. So Megan Kelly asked, "Do you believe all eligible patients should have upfront or delayed transplant? Do you think all patients should receive stem cell mobilization?"

Ooh, that's one of the hottest topics that's out there. So the thing about transplant is that we have data from the 1990's. In the 1995, there was a study by the French myeloma group that showed patients who had autologous stem cell transplant could be essentially cured. Well, back then, they were just in long-term remission. Now, there were some problems with that study.

It couldn't be replicated, but subsequent studies did show that the role of transplant's very important. We just had a study called the DETERMINATION trial, which used Velcade, and Revlimid, and Dexamethasone, and transplant, and patients did extremely well. Now, one of the things about clinical trial endpoints. So when we design a clinical trial, as researchers, we say, "Okay, how are we going to say one treatment's better than the other?" That's what's called endpoints.
So overall survival, living longer from point A to point B is what all of us want. So I want to be able to say, "If I get this treatment, I'm going to live longer than if I didn't," but unfortunately, there's so many years of life that people are living with myeloma. In that trial, you can see that overall survival's improved, people living longer, but we really don't know what treatment's best. So now, we have bispecific antibodies, CAR T-cell therapies. So there are studies now looking at using those innovative, cool, new immune therapies rather than one dose of high dose Melphalan to wipe out your bone marrow and rescue with your own stem cells.
That's the transplant. So I don't think transplant's going away anytime soon. I know that there are some International Myeloma Foundation and International Myeloma Working Group experts that are kind of pulling back from transplant. It's still our standard of care at my institution for most individuals to at least have that option, but if you have to work full-time, or take care of a loved one, or you're just not feeling up to going through the process right now, we absolutely can delay transplant to your first relapse or a little bit longer, 'cause many of the older studies said it didn't matter if you got transplant upfront. If you got transplant at the first relapse, you still did pretty well for a long time.

So please look out for a clinical trial that might be right for you because some clinical trials are looking at ways that maybe they can help not only you now get access to these newer therapies like CAR T and bispecific earlier on, but also might help other patients down the road. So did I answer your question? Should we be doing transplant? I think right now, we're going to, for a majority of patients, at least for 2023, but what's going to happen in two, three, five years from now, I can't predict, so thank you for asking. Okay.

So I saw more callers. We're here for you. Okay, Stana said, "Please explain to me what does 1q21 gain under cut-off means. Lots of literature talk about 1 gain q are both the same high risk." Ooh, that's a great question too.

All my favorite questions didn't ... Pathobiology is another one of my favorites. So when we are looking at patient's bone marrow, in that bone marrow, they have an expression ... We do this thing called plasma cell enrichment. So we put this dye on it called CD138.

So when you look at your bone marrow biopsy report, they'll say, "Of these CD138 positive plasma cells, this were the FISH findings," and so that, you'll know they did this test called plasma cell enrichment, which was picking the best cells to look for bad actors, such as that gain of 1q, translocation of 4;14 and 14;16. Now, to specifically answer your question about 1q21, there's also this discussion about, if you have a gain or an amplification of this chromosome 1q on FISH, if it's like weekly express and not really bright under the microscope, it might not be as bad if it's just that genetic characteristic, but if you have that gain or amplification of 1q with other genetic findings, that might make your myeloma harder to control. I want to emphasize that when we look at genetics in the bone marrow, again, it's not your body's DNA that might be damaged, it's really just these cancerous cells, and so they're hard to find or [fish/FISH 00:21:42] out. We are continuing to learn about the best way to treat people with gain or amplification of 1q. Some recent studies that were published this year are looking at a medication called Isatuximab in combination with Carfilzomib.

That combination seems to be really effective. For me to know the detail about your genetic findings, I would need to look at that whole report, so I would ask your healthcare provider what their interpretation is in your specific case, but in general, we try to do the best we can to treat those changes. Whether it's a little bit or a lot bit, I still might recommend a little more targeted therapy towards those abnormal cells because they can become bad afters if we don't get those cells under control early on, so I hope that helps. Okay, so Michelle, also another favorite question about chromosomal problems. Michelle says she's having trouble getting info on deletion of 13q.

"Do you know of any publications?" Well, Michelle, before, I'd like to say 2011, 2012, all we did routinely in many myeloma centers was technology on bone marrow called cytogenetics. So we didn't even have FISH as a possible test. Again, FISH stands for Fluorescence in situ hybridization, and it's kind of like looking from the top of a skyscraper to the cells in your bone marrow so you can see pretty regularly. Now, some of the newer techniques are called next-generation sequencing.

That's like looking at the eyeballs of the cancer cells, very specific technology, but cytogenetics were really a pretty generic way of looking at these cells. So there are a lot of earlier publications on deletion 13q, and it used to be a bad prognostic factor, but I don't think it is really right now as much as it used to be, and again, it's kind of like bullies in the playground. If you have one kid that's acting out, it's probably okay, and you can overcome some of that "Bad characteristic," but if it's just the 13q, and if it's just on FISH, then you can do just as well as other people if we find the right medication. So for the publications, the myeloma info line, we talked about the number a little bit earlier at myeloma.org. You can locate that number.

It'll pop right up on your screen. Definitely, they'll be able to help direct you to some publications. They do a great job. Steve wants to know, "Any thoughts on the new agent to help mobilize stem cells?" Boy, Steve, you're always on the cutting edge, and that always surprises me.

In 2010, I believe it was, there was an agent called Plerixafor or Mozobil that was FDA approved to help harvest stem cells. So before we had that, we need two million of these CD34 positive stem cells to have a stem cell transplant. So again, the transplant is, we harvest your own healthy stem cells, put them in the freezer, and then after one high dose of chemo, we rescue your bone marrow with your own cells. That's an autologous transplant. Before, we would have trouble getting more than like two million cells, and that's the minimum.

Now, they're doing targets like five million, and six million stem cells so you can do one or two transplants. In Mozobil, with this G-CSF or granulocyte-colony stimulating factor, those are shots you give in your belly for three to five days in a row, those are strategies to put those stem cells from the bone marrow into your bloodstream where we can grab onto them. Now, recently, there is a new agent that's available that also begins with an M, that is by BioLine company, and that has been shown to be highly effective at harvesting these stem cells too. There's going to be more data presented soon, I believe, from conversations this last few days with some of the individuals that are involved in the research that I need to learn more about before I can comment, but it looks like another promising alternative to people that are having a hard time harvesting stem cells. I can't say enough about the fact that we have another drug available for patients, and I don't think that's a bad thing as far of its efficacy and ability to get out to everybody in every treatment center.

Stay tuned, and we'll catch up on that soon. So thank you for another one of my favorite questions. Okay. Let's see. Oh, then Steve asked about harvesting to support blood levels and future treatments, and so that's a great question.

With our new BCMA CAR T-cell therapies, we're having problems with the bone marrow fitness and T-cell fitness, and so there's a thought that may be harvesting some of your own stem cells and putting them away so that you can re-infuse them to rescue your bone marrow down the road, and that's absolutely an opportunity to help blood counts go back up for some of these patients, and that is being done in some centers, and I think it's a great opportunity. I haven't had to do it in my personal ... We have lots of CAR T patients, lots of BCMA bispecific agents, but we haven't had to do that for any of them, so thankfully. We use other growth factors and the tincture of time, which has helped. Okay.

Jen, "Do you know when these drugs will come out that target t (4;14)? I've had a quad and a transplant, and I hope it comes out soon. Do you think 4;14 will be redefined as intermediate risk at one point?" Excellent. You are all such smart viewers, so thank you for joining in.

So translocation 4;14, again, we have our list of high risk FISH features in the bone marrow. I should be doing an Understanding Lab series. I did that last night for a support group, but the 4;14 is definitely one ... I think it's been given a bad rap. A 4;14, 14;16, 17P, and gain or amplification of 1q, those are all of our, what we call adverse genetic findings, but 4;14 doesn't seem like a bad guy anymore like it used to.

There's a translocation 11;14. Now, we know a medication called Venetoclax, which is a class of drugs called BCL2 inhibitor. There's a Lisaftoclax, which is a new form of that that's in clinical studies. People with that characteristic tend to do very, very well with that class of drugs. So you're asking if there's a personalized drug to 4;14, and actually, we have some targets being investigated right now.

You can always go to clinicaltrials.gov, and type in translocation 4;14, or 4;14 myeloma, and see the clinical trials that are being investigated, as well as the myeloma.org info line. They're so great. They find all these information, and definitely ask your provider too if they have any information. Oh my gosh, is it actually 7:29? Oh, I can't believe.

How did this half hour go so fast? I feel like I could be on with you for another hour. So let's do one more question, another one of my favorite questions about an autologous stem cell transplant. Anita had one five weeks ago. They collected over six million cells.
Isn't that amazing? Oh my gosh. Stana had said, she said, "I think you mentioned Isatuximab. My dad, 74, is not eligible for transplant, is on it right now." Oh my gosh, you must be at a very good myeloma center.

So thank you so much. Okay, well, I'm so sad. I can't believe this is over. We have to do this again, for sure. Really, I can't thank you enough for joining in on Blood Cancer Awareness Month. I think this is a really important way that we can raise awareness about blood cancer research.

Multiple myeloma is still too frequently called melanoma, and I would like to change that. I expected to get more questions about COVID and the new treatments, but it's intriguing that many of the questions tonight were on the genetics, and I think that that shows us that we need to do a better job, as providers, about educating you all in our practices about the genetics. So anyhow, thank you for joining. I want to take just a moment to thank our generous sponsors who help with this platform, Bristol-Myers Squibb, Janssen Pharmaceuticals, companies of Johnson & Johnson, Karyopharm Therapeutics, Pfizer, Sanofi, GSK, and the Binding Site. Again, don't forget to share this with your friends and go to knowmyeloma.org, K-N-O-W myeloma.org to share in this campaign.

Again, if you have any further questions, call the Cancer Line, 1-800-452-CURE. They're there to help you. The IMF is there for you. They have tons of free publications and translated in numerous languages for you as well. So at this time, I would like to say thanks again for joining the evening with me, and until next time.

There's the IMF. Is that the right thing to say? I don't know. Have a good night, everyone.