Myeloma ACTION Month Q&A: Beth Faiman discusses peripheral neuropathy, MRD, and treatment decisions.
I think we're live! Hello, everyone. My name is Beth Faiman, and I would like to welcome you to this Facebook event, "Living Well with Multiple Myeloma during Myeloma Action Month." I am a founding member of the International Myeloma Nurse Leadership Board, founded in 2006. As a nurse practitioner at the Cleveland Clinic in Ohio, I have been involved in the care of patients with multiple myeloma since 1994. Today, I'd like to speak with you about sharing your multiple myeloma story with others in your community, their families, friends, and healthcare professionals. I hope that through sharing my story, it will inspire you to share your stories with others.
Before I begin, let me take a brief pause to make sure I can see everything. Great. Let's begin. I've done these Facebook Lives before, but they're always a little bit different. After I share my story, I'd like to share some exciting updates on neuropathy management, some survivorship research stories, and of course, answer your questions. So, how did I begin caring for patients with myeloma? During high school, I cared for elderly patients in need, which prompted me to want to help others. While I initially wanted to
become a social worker, I ended up pursuing nursing instead. I first observed the struggles that patients with myeloma underwent going through chemotherapy and stem cell transplants. I thought, "Maybe I can be there for them and really help them through what they're going through." Unfortunately, almost 30 years ago, this was before we had anti-nausea medications, really good pain medicines, and the supportive care was not great. I was passionate about
finding control of symptoms, whether it was through pain medicine or just being a comforting ear to hear from. Patients got very sick, and I started working not just with multiple myeloma patients, but also with leukemias and lymphomas. I also worked in the palliative care ward, where I would help people through their worst symptoms. Most aggressive symptom management was what palliative care was back then, and still is. And that was really special, especially when they were at the end of life. So fast forwarding until 1997, I'll never forget, I was in the cafeteria getting my lunch, I was working 12 hours that day, and I was fortunate to meet a doctor, came up to me, his name was Dr. Mohammed Hussein, and he says, "You know, I've seen you on the nursing unit, and I'm so excited to share that we have had 135 new patients with myeloma in the last year and I'm building a multiple myeloma program." He had just joined with
Dr. Durie and Susie Novis at a IMF conference, and he was so excited to talk about some of the research opportunities. And I liked caring for myeloma patients, I liked caring for patients in the hospital at the time though, and it was a unique opportunity to go to the outpatient. But I said, "You know, I'm still young, I have a lot to learn. I'm gonna just stay here for a while." I saw how sad patients were when they were admitted to the hospital and they didn't have access to family, or they had to share TVs back then. And so being a comforting ear to
listen to and provide the things that they needed to get them through the day was really important. One of the interesting stories I had was I had a patient that was admitted for this infusional VAT, the vincristine, adriamycin and dexamethasone. And that was something that they would get an infused mediport in their chest, they'd have to have a surgical procedure. And I'll never forget, I sat down on this patient's bedside, and it was a young guy, and he just couldn't believe that he was diagnosed with myeloma. But I got to know him through that hospital stay, and through subsequent hospital stays, I attended to their discharge instructions, I made sure I answered all their questions, and then fortunately we formed this bond and I took care of him for an additional 15 years when I moved to the outpatient. Boy,
do I feel like I'm talking on and on. I'm just gonna do a time check, pause, and see if there's anything I need to do on my Facebook screen. Thank you for bearing with me. I'm pretty technologically savvy, but some of this technology
isn't as easy. I'll tell you, I really appreciate this technology. But anyhow, so what happened after 1997, and you're thinking, "She's gonna talk forever," and I promise I won't. Based on my unique experiences in caring for patients with blood cancers, I'm like, "You know what?" I went back to this Dr. Hussein and I said, "You know, I'm really interested
in making the move to the outpatient, and I'm going back to school, and I'm gonna pursue a master's degree." And he said, "Beth, why are you wasting time getting a master's degree? You should just go to medical school." And I didn't think that was something that was in my best interest because I worried about school loans, I already had plenty of them. How was I gonna pay the bills? Where was I gonna end up in school? I had family responsibilities. So I decided, "You know, I'm gonna get a master's as a nurse practitioner, and I am going to learn how to best care for patients."
And I finished in 2002, and when I finished, there were no nurse practitioners at the time at the Cleveland Clinic. So I'm like, well this is interesting. I really wanted to work in multiple myeloma at the Cleveland Clinic and there was no job for me. I don't know what I was thinking. But I went down the street and I had some great experiences as an inpatient nurse practitioner running a chemotherapy service. And then about a year later, I got a call from that same Dr. Hussein who brought me back to the clinic, and since August of 2004, I've still been in the same position as an adult nurse practitioner. But I was running clinical trials, I was getting people on some
of these studies. This was, again, way before we started using Revlimid or even Velcade, but my experience in clinical trials led to the desire to learn more. I said, "You know, I might be a nurse practitioner," "but I want to learn laboratory research." "I wanna understand the details" "of patients' bone marrow microenvironment." "I wanna understand the science" "behind protocol development." "I wanna interpret all these studies," "and I think in doing that would help me" "explain them better to patients" "and conduct my own clinical research." So
I obtained a PhD from Case Western Reserve in 2014, and since then, I've been continually involved in research. So today, after all these years in managing myeloma, and fortunately through the good fortune of meeting the International Myeloma Foundation and being one of their founding members of the Nurse Leadership Board. I can't tell you all the wonderful people I've met, all the amazing experiences, and I still remain, to this day, passionate about educating doctors, and nurses, and other providers on the diagnosis and management of multiple myeloma. 25 years ago, I could have never imagined these advances. I remember hearing about CAR T-cell therapy in the early 2000s and I thought it was like science fiction. You're taking
the cells out, you're engineering them, and giving 'em back to patients, is that really gonna work? And I was skeptical, but now we have two excellent CAR T-cell therapies approved, we have bispecific antibodies approved, and I am so pleased to share that I still follow many of my patients from the 1990s and early 2000s, and it's really been nice to build these relationships. Seeing grandchildren born, and people graduate high school, and getting those people who might not be fortunate to have that long lifespan, really being able to build relationships and support them while we can. So there you have it, that's my story. And don't forget to go to Myeloma Action Month,
or mam.myeloma.org to tell yours, but we're not done yet. As promised, I wanted to share with you two really exciting, I think, updates in peripheral neuropathy and survivorship. I might take a pause in just a minute, but I think I'll just go through these two points and then we'll have plenty of time to chat before our time is up at the end of the half hour. So first off, peripheral neuropathy. This is something that in the early 2000s, when
we started using thalidomide in high doses, and then high doses of Velcade, twice weekly IV, patients were suffering with these symptoms. So not only the myeloma can cause neuropathy symptoms, that numbness and tingling in the fingers or feet, it's as a result of the damage to the peripheral nerve. So we were really pushing them, because their myeloma was responding. For the first time, we saw people go to zero on their myeloma numbers. We used to call
it plateau when they were in stable disease. That was like our best response. Now we're looking for VGPR, MRD status, and very exciting stuff. But it remains that neuropathy can be a very devastating, even mild neuropathy, can be a very devastating side effect of the diagnosis or the treatment. This is caused by injury, inflammation, or degeneration of the peripheral nerve fibers. It can affect your quality of life, compromise your optimal treatment. So if you have bad neuropathy, some of the clinical trials you won't be able to participate in. Fortunately, that's changing.
We're not getting to the severity of neuropathy as we once did. But myeloma-associated neuropathy has actually been reported since the late 1800s. Again, patients are living longer. I think there are so many different other things that can cause neuropathy, such as uncontrolled diabetes, vitamin deficiencies, particularly vitamin B12 deficiency, B6 toxicity, it's really a big deal. So how does this happen, this neuropathy? Again, it's from the disease, it's from treatment, it's from other conditions. So if you have a symptom, speak up. Make sure your provider knows about neuropathy. It could be very easy is checking a vitamin B12 level, or a vitamin B6 level might be toxic.
There are three types of peripheral nerves, the motor, the sensory, and the autonomic nerves. Some people have neuropathies that affect all three types of nerves. Nowadays, and what's most common, is those that affect the sensory nerves. Now, along that way, one of the things I don't always talk about when I discuss neuropathy is dermatomes. It's something that we don't really go into that level of detail about, but I found it was really important when I was talking about this new therapy I heard about that we've been using at my institution.
Dermatomes are like a roadmap when it comes to health and function of your spine and your nerves. What happens is that we know the spinal nerve is critical for a dermatome, because it carries all the nerve signals back and forth, traveling between the skin organ and the brain. Dermatomes are areas of the skin that really connect a specific nerve root. So for example, you can have a lumbar spine dermatome, which is at the end of the spine. And I'll show you a little picture, I'll do a a little picture of a dermatome map that I share with all my patients. But the nerves travel, so sometimes if you have narrowing
of your spinal cord in the lower spine, not myeloma-related necessarily, may be from arthritis, then that can make you have different sensation and different motor problems. When you have it, that affects from the peripheral neuropathy though, that's an area that tells us where the change in sensation is. Again, we've known about neuropathy for many, many years, but we don't really have great things to treat it. My PhD dissertation was on using high doses of oral glutamine to ameliorate neuropathy in patients receiving bortezomib, or Velcade. We frequently use medications such as Neurontin
or Gabapentin, as well as Lyrica or duloxetine (also called Cymbalta). Another option I often recommend is alpha lipoic acid, which has been studied in diabetic neuropathy, as it has very similar characteristics to the neuropathy caused by chemotherapy. Different people may experience neuropathy differently, with some feeling like they're stepping on legos, while others may feel like their socks are crumpled underneath them. Neuropathy in the skin and distal nerves can manifest differently in how it communicates with the brain. As I mentioned, I was excited to hear about a new therapy for neuropathy because there hasn't been any updated research in quite some time. This new therapy is called scrambler therapy, which is like scrambling age or scrambling symbols. It's a non-invasive way to modify
pain in patients who are not well-managed with their chronic pain for varying reasons. In 2003, Giuseppe Marino, a researcher from Italy, described how out of 11 patients with horrible pain in terminal cancer, 9 of them actually stopped using their pain medicines because of the scrambler technique. There have been different machines, but the latest one has been FDA approved in 2020. It's called the ST5A, and it's a non-invasive, electric
analgesia device. It has five different channels and looks like an EKG machine. You connect the leads to the different areas that might be painful or causing discomfort. The device is placed along the dermatomes, and there are five artificial neurons that scramble the signals to the brain. It gives you nerve impulses of information that is recognized as non-pain. Some people describe the feeling as tingling or little electro shocks, but it kind of mimics a massage, and it re-modulates the signals of perceived pain from your feet to your brain. The cool thing about this therapy is that it might not be perfect for everyone, but it follows a dermatome, so it's specific to the area where the pain is located. You have
to do it daily for about 10 days with two-day breaks, such as Monday through Friday with the weekend off. There is a time commitment required for this therapy, but the results can be promising. At my institution, physicians who perform this procedure are palliative and pain specialists. The therapy works to scramble the pain signals to the brain from the skin, as it's a two-way street. So far, there have only been a handful of patients who have tried this therapy, but several have reported benefiting from it to some extent.
The one of them I talked to the other day said, "Well, I thought I wasn't getting better," "and then I did over the weekend," "and now I can tell I might benefit from it again." And so they just sit in a chair for 30 minutes to an hour and read a book, watch TV, whatever. How is it different from a TENS unit? TENS stands for transcutaneous electrical nerve stimulation therapy. And that, for years, has been shown to help neuropathy, back pain, and various disease states, but that's administered by the patient and given in different areas that might cause pain. The scrambler, again, interrupts the pain signals, and it's like a one-time therapy.
So you do the 5 to 10 doses and then you're done. There are some studies in chemotherapy patients, but because this is a newer machine, newer technology to the United States, there haven't been as many studies. So that's one of the things I'm looking forward to doing is, perhaps, wish me luck, fingers crossed, finding funding through grant sponsorship to convene a study.
I think we only need probably 20 patients with myeloma, and the problem is the cost, as with anything, and right now you have to be specially certified to administer this to patients. So hopefully this will cause long-lasting relief. In some studies that were done over in Europe, one or two treatments really, really helped. Some people just on that first treatment helps, and then it might be worth going on too. But that was just updated, some of the studies on this we're updated in the last six months. So it's something that I hear a lot about on the myeloma page, so I thought I'd bring it up again.
So, all right, well, so time flies. I mean I could talk for hours on different topics. I do wanna talk about the importance of survivorship in myeloma. I think we've all informally went to our provider's office and they ask about health maintenance, when you're due for your colonoscopy, blood pressure checks, cholesterol checks, prostate checks, and some of your cancer doctors might do that. Sometimes they tell you to go to a primary care provider and ask them to do that. But I think one of the most important things we can do, as providers in oncology that are seeing you on a regular basis, I think it's important that, and I might get in trouble for saying this, but I think it's important that we take an active role as oncology professionals in helping you navigate the diet, exercise, lifestyle modifications that are necessary, and have a formal survivorship program, which I'm implementing at my institution, where anybody who's finished with stem cell transplant will have regular visits at 3 months, 6 months and 12 months, where we look at quality of life, we look at health maintenance, we look at long-term side effects, and then we'll follow you on a regular basis, and it'll be individualized. Maybe somebody lives far away and doesn't wanna come but every six months, or maybe they wanna come every three months. So we'll work with that individual to tailor a program
that's right for them based on their needs. And we can do this virtually or in person, 'cause we know survivorship in myeloma starts at diagnosis, and we also know it's a well-known fact that transplant patients might have long-term needs with survivorship. This paper that was published on March 2nd by one of my favorite myeloma physicians, used to be a fellow with me, now he's at Columbia, it's Dr. Raj Chakraborty, and Dr. Navneet Majhail, he's at Sarah Cannon now. So we're sort of sad to have left them, but they have done a lot of research in myeloma patients and survivorship in coordination with stem cell transplant patients. They just reported in their paper that patients who receive three
drug regimens go into remission and then have a stem cell transplant, from several studies, about seven years remission, which is great news. And if you're 65 years at that time, you might have more health needs like diabetes, hypertension, and heart, and all that kind of stuff. So they looked at survivorship importance, health-related quality of life, distress, healthy behaviors, and all these kind of factors that we would need to think about and take into consideration when we're looking at the survivorship needs of this growing population. 'Cause there were what, 9,000 transplants for myeloma were conducted up until like 2018 in the CIBMTR database, which is the Center for International Bone Marrow Transplant. But at the study, they looked at adherence to guidelines such as exercise, alcohol, sunscreen, and diet, and other preventative strategies. And the findings showed that, as suspected, there was a significant health burden with uncertainty of health, and medical demands, and financial concerns, but fortunately, 81% were able to adhere to exercise guidelines and actually remain active. There was this questionable distress around adhering to alcohol,
which I don't know what to make of that. It might be a limitation of the study. The other limitations might be that it was like a retrospective, we looked at old data, and then we also couldn't see what happened, except in this little time point. But the take-home message here is that patients with myeloma are living longer than ever, and they have distinct needs for survivorship. And I think that it was good first novel study that I'm going to use findings from as I do more survivorship care in myeloma. So I guess that's it. I hope you found this to be interesting and informative to share
information about myeloma. And this has been fun, and I still am here to answer some questions for the next six minutes. But another plug, don't forget to check out Myeloma Action Month, or mam.myeloma.org to share your story, and go to myeloma.org for any questions and answers. Myeloma... It used to be the Cancer Help Line, but it's more of a... Oh, Robin Tuohy, I'm so sorry, I forgot what it's called. It's the 1-800, 888-452-CURE? Oh, you're on the
website, you'll be able to find it. Before I go to questions, I wanna kindly thank you to all the sponsors supporting Myeloma Action Month, that's 2seventy bio, AbbVie, Amgen, Binding Site, Bristol Myers Squibb, GSK, Janssen Pharmaceutical Companies of Johnson & Johnson, Karyopharm Therapeutics, Pfizer, Regeneron, Sanofi, and Takeda Oncology. And please forgive me if I forgot anybody. I think at that time I'm going to ask for any questions, and, oh, look at all this stuff in here. Okay. Okay, so let's see, we have some wonderful... "My wife is coming up on the stem cell transplant."
Yay! "Coming up on two years, I take Revlimid, thank God." "17 DP deletion and a bone marrow transplant." Yay, good for you. We have some really, really good messages in here. Good messages of hope. Yeah, please take a look at your... Yeah, go to the website, and some
of these stories are so inspiring. Important factors for living well, that we talked about the minimal residual disease and mass spectometry, which are always very important. Info Line, thank you. Fearless leader, Yelak. The Myeloma Info Line, that's what it's called. All right, so we have really good things, and yeah, I think that's about it. "Talk about MRD tests after transplant." Sure, why not? So MRD stands for minimal residual
disease, and minimal residual disease is part of, I mean, I think of it as part of the Black Swan Research Initiative. One of the IMF sponsored research things. And so I hear Dr. Durie had explained it, before, you thought you'd never see a black swan, until one day there's a black swan. Much like we never thought there would be a cure for myeloma until we saw it. And some people are functionally cured and still in remission eight years after transplant, with or without maintenance. We call those people exceptional responders. Nowadays, there's research and technology that can look at one in a million plasma cells in your bone marrow. Through a technique called next generation sequencing, researchers can look underneath the microscope and kind of pick out how many bad clones are in that bone marrow.
And in order to do that, they take the original bone marrow biopsy, send it off to Seattle, clonoSEQ Adaptive Biotechnologies is the one that does it for me. I know there are some other in-house tests, but they'll compare the bad clones in the bone marrow to diagnosis, so you need at least 5% bad cells in there, to the after transplant marrow. Studies have shown that patients that achieve minimal residual disease, some of 'em say it doesn't matter how you got there, just that you got there.
That was that IFM 2009 study of the data farmer, and the French myeloma group had one study that said, "Just get to MRD status." Some people say, "Well, maybe you're more likely to get there if you use a stem cell transplant to get there." And if you achieve MRD negativity, some centers are continuing to watch your MRD negative status. Now, we use it in the context of clinical trials. I don't typically use it to make treatment decisions. Like if I've had somebody on maintenance for seven years and they're doing extremely well, they have no side effects from whatever maintenance they're on, or maybe they're not on maintenance, then we have that discussion, "Now I think it'll be more important." So it's nice to know, but not need to know. If you're willing to go through it, bone marrow biopsy is how
we find out. Now we're getting some mass spectrometry and other cool techniques that might prevent us from having to have a bone marrow biopsy recommended to check MRD negative status. But stay tuned, for sure. So I hope you found that helpful. Oh, I saw my friend Steve from Boca. I'm gonna be in the Boca Patient Family Seminar coming up. Thank you for inviting me. I live in Cleveland, Ohio, so I look forward to that in a couple months. And they have such good information through the IMF. So I think we're at 7:29.
Let me just try to see one more time. Thank you again for that Info Line link and all these cute emojis, I appreciate that. And feel free to again, reach out to the Info Line if you have any other questions, concerns, or follow-up on this presentation.
You inspire me every day on a daily basis, all the patients, and the caregivers, and all of you that are striving to learn as much as you can about others. And I said a couple of times, don't forget to go and share your story. I feel like it can be very therapeutic. Share your clinical pearls, share those things that got you through the tough times, and those might be something that resonates with somebody you don't even know. And that's what's
nice about social media, is we can connect on a different level. So I think that's about it. Again, thank you for your time, and I hope you have a wonderful day, and stay safe everyone. Bye.