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PODCAST: HCP Roundtable: Critical Clinical Trial Conversations in the Expanding Myeloma Landscape



 

Treatment options for multiple myeloma have increased substantially, mainly attributed to advancements in clinical trials. More than ever, HCPs having conversations about trials is critical. Given that underrepresented communities bear a disproportionate burden of multiple myeloma, it becomes imperative to shift this paradigm.

What are the optimal approaches to initiate these conversations early in the patient journey? How should HCPs effectively communicate information about clinical trials to patients and their families, including care partners? Myeloma experts Dr. Craig Cole and Charise Gleason lend their expertise, offering insights into best practices and guidance on the next steps to be taken.

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a patient empowerment network program that serves as a secure space for healthcare providers to learn techniques for improving patient-physician communication and overcome practice barriers. In this

Myeloma roundtable, we are tackling critical clinical trial conversations in the expanding myeloma landscape. Some of the things we’ll discuss during this program include, how to explain the sequence of myeloma treatment and how clinical trials fit in. Healthcare provider to healthcare provider, recommended strategies for initiating clinical trial conversations early in the myeloma patient journey, and how to effectively mitigate and manage concerns regarding clinical trials through education, and continuously encourage patients and their care partners to ask questions.

It is my honor and privilege to be joined by Charise Gleason, vice President and Chief Advanced Practice Officer for Emory Healthcare, and adjunct faculty at the Nell Hodgson Woodruff School of Nursing at Emory University. Ms. Gleason leads the physician assistants and nurse practitioners across Emory Healthcare, overseeing clinical practice, quality, safety, and education. Thank you so much for joining us today, Ms. Gleason.

Charise Gleason:

Thank you so much for having me.

Dr. Nicole Rochester:

We’re also joined by Dr. Craig Cole, a board certified hematologist. Dr. Cole leads multiple clinical trials in multiple myeloma, and has worked extensively with patient advocacy groups to empower, educate, and bring equitable care to everyone. Thank you so much for joining us today, Dr. Cole.

Dr. Craig Cole:

Yeah, and thank you for the invitation.

Dr. Nicole Rochester:

While this conversation can be broadly beneficial, in this program, we are speaking to the unique needs of myeloma patients and families. So let’s get started with how to explain the sequence of myeloma treatment, and how available clinical trials fit in. So I’m going to start with you, Dr. Cole. We know that there has been rapid advancement in the myeloma sphere. Can you speak to how the introduction of novel drugs, treatment combinations and therapeutic modalities may pose some challenges for healthcare providers as they attempt to explain the sequence of treatment in relation to available clinical trials?

Dr. Craig Cole:

Yeah, that’s a really good question, especially because so many things have been changing in myeloma, and such a rapid secession. It really, it’s been kind of not only an incredible transformative past 20 years in myeloma as we’ve moved away from using chemotherapy to using really targeted therapy, but really in the past five to 10 years, and us using immunotherapy and now T-cell directed therapy, it’s been transformative.

And it’s been very, very difficult for myeloma experts to kind of configure how these treatments are sequenced, and how the clinical trials are conducted. But basically, we have gone from using single drug therapies to using combination therapies for refractory patients to using multiple modalities and as upfront therapy for myeloma. Up until today, us using four-drug induction therapies with IMiDs proteasome inhibitors and now immunotherapy with anti-CD38 therapy being used upfront.

Now, we have…we’re on the fact we are past the horizon of using T-cell directed therapy for relapsed/refractory myeloma. Those are now being put in combinations. And at the last meetings, we saw data in combining talquetamab with the bispecific antibody with pomalidomide (Pomalyst) having incredible response rates to 99 percent to a 100 percent. The combination of using daratumumab (Darzalex)with teclistamab (Tecvidli) at ASCO a couple of years ago having very, very, very high response rates for relapsed/refractory patients.

And, of course, the combination of using two bispecific antibodies talquetamab (Talvey) and teclistamab together having, again, in these incredible response rates and for relapse refractory myeloma. So in very quick orders, we’re going to see those therapies moving further and further upfront, which is a huge benefit to patients.

But it can be kind of difficult to keep up with all the changes in myeloma, especially as we move from using these drugs as single agents, to using them in combination. And not only to speak to using some of the newer drugs like Mezigdomide in combination with daratumumab, having one of the CELMoDs having very, very high response rates.

And so it’s exciting, but it does, it’s a challenge to discuss clinical trials with patients, because so many things have changed. We now have clinical trials across the spectrum of myeloma, using bispecifics as upfront and smoldering myeloma, which was at the last ASH meeting to using again, more novel therapies upfront and relapsed/refractory space and in the maintenance therapy space.

Dr. Nicole Rochester:

Well, that’s all very exciting, and I appreciate you sharing that because as you’ve said, there’s been a really kind of an explosion for lack of a better word, in the numbers of treatments that are available as well as increasing improvements and results. But as you shared, having all of these different modalities available can definitely cause some confusion even among those who do this every day. Do you have anything to add to that, Ms. Gleason?

Charise Gleason:

No, I think, well, I think Dr. Cole described that perfectly. It’s an exciting time, and also a challenging time, which just really brings you back to that team care approach to your patient, and how all of us need to work hard to keep up to date on the latest information. Dr. Cole mentioned quadruplet therapy, and we’ve got two clinical trials that have essentially told us. if you add that quadruple therapy and add that antibody upfront, you drive that deeper response.

So we change our practice probably sooner in the academic settings. And it’s really how do we get this out to other healthcare providers in our referral basis that send patients to us? And then also, how do we do maintenance? And I think Dr. Cole would agree most of us risk-stratify for that maintenance setting too, whether it’s one drug or multi-drug, depending on our patient’s disease.

Dr. Nicole Rochester:  

Wonderful. So certainly, this conversation alludes to the fact that the clinical trials regarding these medications are also increasingly complex. And so I’m going to go to you, Ms. Gleason, because we know that nurses and advanced practice providers provide understanding of these trials, including potential benefits and risks, and all of the things that are required as they consider participating in a trial. And then, as you all have both shared, there is some tailoring around the treatment with regard to the disease state, whether it’s relapsing, whether it’s refractory. So with that in mind, do you have any best practices around tailoring the trial conversation with regard to specific patient needs and situations?

Charise Gleason:

Well, I’ll start with, we bring that discussion with all of our patients about the potential of a clinical trial from the start. And so we’re all versed on that, we all look to what clinical trial could be available for this patient. So we’re used to having that conversation. So our teams all need to be educated, participate in our research meetings, so we are ready to discuss a trial on that. We sometimes get to spend more time with patients, and we get to know our patients. These are patients we see frequently, and so we can have those conversations.

You might have somebody who’s starting to have a biochemical progression. It’s not time to change their therapy yet, but we’re already thinking about what’s that next line of therapy. And so as we start to approach that with clinical trials and standard of care, and opening that dialogue, so it’s really that communication and that rapport and relationship you have with your patient, and that care partner. So an ongoing conversation about the different treatments that are available to them.

Dr. Nicole Rochester:

So we know that patients with myeloma are living longer lives based on everything that you all have shared, and with that comes a different set of options and challenges.  And you also have alluded to this team-based approach, Ms. Gleason, and we know that there’s a critical role that advanced practice providers play in the myeloma clinical trial setting. So I’d love for you to speak to that..the role that advanced practice providers play in myeloma clinical trials.

Charise Gleason:

Yeah, the advanced practice providers have started specializing like our physicians do, and we have that collaborative relationship, and we are part of that team approach to take care of our patients. So we’re identifying patients for potential clinical trials. Our scope of practice does vary a little bit from state to state. So in some cases, we can also enroll patients. If we’re not able to do that, though, we can already have discussed the trial, discussed side effects, presented them with the consent. So when they do meet with the physician, they’ve already seen a lot of that information, and then they can ask further questions with the physician.

I think the other big role that we play in the clinic setting is we see these patients, we see these patients for follow-up. So we’re doing a lot of management of the side effects, supportive care through the trials. We might be a little more available during the week, so if a patient’s here on another day, and they’ve got something going on, we’re answering those portal questions, and calling patients back and just really collaborating with our physicians and also the research team.

Dr. Nicole Rochester:

Dr. Cole, I’m going to turn the conversation back to you. As a physician, I know that often, there are some barriers just as part of our everyday practice that can hinder our work. And so I’d love for you to speak to any unforeseen or outdated practice related barriers that you feel may hinder your work, and the work of your colleagues specifically as it relates to myeloma trials. And then if you could also share some potential solutions to those barriers.

Dr. Craig Cole: 

Yes, super good question. I love this question. There are a lot that are out there that I…barriers that I hear providers talk about at other academic centers and in the community. One is that patients don’t want to go on clinical trials that they…and some of that is subconscious bias. Sometimes those are true, true bias. We know the FDA knows all the drug companies all, and I think every myeloma provider knows that there have been horrific disparities in the enrollment of patients in clinical trials based on race and age and ethnicity that the FDA looked at some of the data of trials that were going for FDA approval, and found that over the past 10 years, and that in those trials, that only 4 percent of the population of the trials were Black.

While in the United States, the number of Black myeloma patients is about 20 percent, over 20 percent of the myeloma population. So that’s a huge disparity. And what I hear is that while older patients and Black and Hispanic and Asian patients don’t want to go on clinical trials, and that’s not true. That’s been shown in multiple clinical trials that actually, the patients of different ethnicities and races actually are more likely to go on clinical trials than other racial groups. And so I think that it’s really important to keep that in mind that patients really…that really the ownership of getting a patient on a clinical trial is really on us to present the clinical trial option to them with every single conversation that we have.

 Some of the other barriers to clinical trials is, and Ms. Gleason had mentioned this, what they do at through the Emory system is that, well, the nurses and the other staff in the cancer center aren’t aware of the clinical trials, that when a patient goes through the clinic, they talk to more than just the provider. They talk to the treatment nurses, they talk to the intake people, they talked to the MAs, they talked to the scheduling people.

And there was a study that was done a few years ago in looking at patients who were given consent forms and declined clinical trials. And they found that a lot of patients declined clinical trials, well, because they said that, well, their doctor didn’t want them on the trial. And when they looked further into that, they saw that, well, the doctor offered them a clinical trial, but when they discussed the clinical trial with a nurse practitioner, when they discussed that trial with a treatment nurse or the MA or any of the other staff, when they didn’t know about the clinical trial, that was considered well, if you don’t know about the clinical trial, it must not be good for me. And then they withdrew from the trial.

So just like what they do, what Ms. Gleason had said, we have an all-in approach. We make sure that the treatment nurses, the MAs, the intake people know what we’re doing, know about our clinical trials, because that’s the fun part about what we do. The fun part is when we say, look, my goodness, this four-drug therapy had a 100 percent response rate. That shouldn’t be left in the physician compartment. It really shouldn’t be left in the provider compartment. That excitement should be clinic-wide. And when you have that all-in approach where everybody’s involved, everyone’s excited about clinical trials, it produces a culture of clinical trials that everybody wants to be part of, and the patients then can jump on that bus and feel comfortable participating in the trial.

Dr. Nicole Rochester:

Wow. Thank you for elucidating that. Both the issue of the health disparities that we see in clinical trials and the need to diversify that clinical trial patient population, some of those biases that exist, as well as really lifting up this idea of creating a culture of clinical trials. I love the language that you use for that and the idea that everyone throughout the entire clinical encounter needs to be both aware of, and excited about the clinical trials that are underway. So I appreciate that.

That leads us nicely into our next segment, which is really focusing on strategies for fellow healthcare providers for initiating clinical trial conversations early in the myeloma patient journey. So I’m going to go back to you, Ms. Gleason. We’ve been talking about this team-based approach. We know that nurses serve as key coordinators of care in the myeloma trial setting, as well as other members of the healthcare team. So from your perspective, what are some recommended strategies that you can share to encourage advanced practice providers, specifically how to initiate the clinical trial conversation at the outset of care?

Charise Gleason:  

First, we need to educate our advanced practice providers. So for new APPs coming into our system, part of their onboarding is the research mission, exposing them to the clinical trials, exposing them to what we have available. We have a weekly research meeting, I’m sure Dr. Cole has similar practices. And then our group has a separate meeting once a week, where we meet for two hours. The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what’s, clinical trials are available, that’s just how we practice and we think about that.

I would like to add to that, referring to a center early is so essential as well, and for us to start having that conversation. And I’ll talk a little bit to build on something Dr. Cole said with our patient population.  In Atlanta, in our database, 40 percent of our data is based on Black patients. And we enroll about 32% to 33% of Black patients on clinical trials. And what our work on trials has showed us too, if you give the same access to every patient, you have good outcomes and good outcomes for Black patients, if not better, than white patients. So we all need to be versed on that, whether you’re the research nurse, the clinic nurse, the physician, the advanced practice. And so we really do bring that approach to taking care of our patients.

And then, managing those side effects and having that open dialogue. So patients aren’t surprised by things. And I’ll use talquetamab for instance. We have a patient who is still on the original trial, who relapsed on a BCMA targeted therapy. Early on, these side effects were new to everybody. And she wanted to come off the trial month end. And it was that education piece and working with her, holding the drug, that now almost two years later, she’s still in remission, tolerating the drug. And so those are the stories and these are the experiences we have. We’re giving really good drugs on clinical trials and patients are responding well.

Dr. Nicole Rochester:

That’s an amazing success story. Thank you for sharing that. What about you, Dr. Cole, with regard to potential strategies for healthcare providers, what are some things that they can implement for initiating these clinical trial conversations early in the journey, particularly in the current environment?

Dr. Craig Cole: 

Yeah. And Ms. Gleason had mentioned this at kind of the top of our talk about having those conversations on day one. On day one of our patients coming in either as a second opinion, as a new diagnosis, as in whatever setting, we talk about…we have a list that we go through with the patient that talks about their stage or the disease, how we’re going to follow up. And there’s a line that I have to address, which is, clinical trials. So I mentioned our clinical trials, I mentioned on day one. And I think one strategy that other healthcare providers can take is that, even if you don’t have a clinical trial at that time, so right at this moment, we don’t have an upfront clinical trial.

We have one for maintenance therapy, post-transplant, but we don’t have an upfront trial. I mention that. I say that there are clinical trials that are available for your myeloma. Right now we don’t have a clinical trial for upfront myeloma, but we can refer you for a second opinion for an upfront trial if you’re interested or…and we have a clinical trial in maintenance. So that sets the groundwork that we’re going to talk about clinical trials on every visit. And that it doesn’t come as a surprise. Because the last thing you want to do is that someone is having a relapse and you say, “Oh, we’re going to talk about clinical trials today.”  Because then it’s like, “Oh my goodness, this is a desperation.” This is a desperation move, and it puts a lot of anxiety when you frame it, and we need to do this now as opposed to having on day one.

The second thing that I think really helps is getting patients involved in the myeloma community, especially with the support groups having not only the patients, but their care providers and families involved in the myeloma community. Because the myeloma communities through a lot of the support agencies like the IMF, the MMRF, the HealthTree, they have a very strong clinical trial culture. And when patients get involved, not only is that empowering to see other myeloma patients doing well, but to hear other myeloma patients talk about their experiences in clinical trials really, really helps. And I think the last thing that we use to help patients, go through clinical trials, is a couple of other things, is one, every time we talk about treatment options, if that is maintenance, if that is smoldering, if that is a relapsed/refractory therapy, we always put clinical trials in that conversation.

 Again, even if we don’t have that clinical trial at our institution, we talk about this as an option that we could refer you out to. And, and then we always talk about…I think one other little thing is that every visit that patients have, I somehow include some of the new things that are happening in myeloma. Now, my patients kind of expect it. They expect. They know when December and June is because when I see them after ASH and ASCO and sometimes they’re like asking, “So what’s new?” And once we get into that groove, they see, gosh. There are response rates that are off the charts with some of these new things. These patients are involved in clinical trials and the myeloma and multiple myeloma research is progressing at such a rate and things are getting better that patients want to be involved in it.

So we’re always talking about new things. Do I go into depth of detail with talquetamab and pomalidomide. I don’t go into depth of detail. And I say, where I was this clinical trials at our last ASH meeting that combined these two drugs for a relapsed/refractory myeloma, even patients who were refractory to some of the drugs you’re on now. And response rate was like 100 percent. And then when I talk about those clinical trials in the future, they’ll remember, man, that guy was talking, he’s all upset about these clinical trials. Maybe I want to be involved in them. So that’s kind of my few strategies that I use. 

Dr. Nicole Rochester:  

I love that. And what I really hear both of you saying is this idea of normalizing conversations about clinical trials and not introducing them as like a Hail Mary, so to speak, but really from the very beginning, letting patients and care partners know that this is a viable treatment option. So I think that is wonderful. And I can say like, your excitement is contagious for me, so I can only imagine how excited the patients that you work with feel.

So let’s move on to our final topic. How do we mitigate and manage concerns despite all these wonderful things that both of you have shared? I’m sure that patients and family members have concerns about myeloma clinical trials. And so I’ll start with you, Ms. Gleason. And as you hear concerns from patients and families over the years possibly related to fear of randomization, fear of getting the placebo, you all have mentioned some uneasiness about adverse effects. How do you effectively mitigate and manage these concerns with patients and their family members and care partners?

Charise Gleason:

Yeah, you just have to continue to have open communication. And if you’re, if a patient is accustomed to you mentioning clinical trials, then when you present one to them, right? They’re a little more open to it. But not everybody starts with us. And we get referrals in midway and different parts and different paths along the way. But patients we do hear, “I don’t want to get a placebo.” Or you’ll mention a clinical trial and somebody will say, “Am I ready for hospice?”

And it’s, you have to go back and start that education again that, no, you’re getting good treatment on this, a registry trial, for instance, you’re going to get standard of care treatment plus or minus something else, right? And so we really have to go back and educate that you are getting treatment. You’re going to be watched closer than any of our other patients actually.

You’ve got a whole team around you that’s talking about your trial and our patients every week. And so I think that our excitement and our being positive, we can get those patients to enroll on trials. I think something that makes me really happy is, we keep a list of every treatment line, and when you go through and it’s like standard of care, clinical trial, clinical trial, standard…it’s we’ve done the right thing then, right? Our patient has had full advantage of what’s available to them when we do that. 

Dr. Nicole Rochester:

What about you, Dr. Cole? Do you have anything to add with regard to managing the concerns that come up?

Dr. Craig Cole:

Yeah. The one thing that I tell patients, and I tell patients one-to-one, and when I do talks for some of the efficacy groups that I tell lots of patients that. That in 2024, myeloma trials are incredibly competitive. And the only, the best, best drugs, now float to the top as part of our clinical trial portfolio. There were days I remember begging companies for clinical trials saying, “Please, please think about myeloma.” And we were struggling.

Now, it is incredibly competitive, and that competition does a fantastic thing for patients because what we see in the clinical trial portfolio are drugs that are safer and safer and safer, and drugs that are more effective and more effective. When you go to these meetings and the expectation is that our response rate needs to be over 60%, then you know that the clinical trial mail you, that we work with them, is of a super high quality, which you really can’t say for a lot of other types of cancer.

So I tell patients that their fears that they have are absolutely justified. And one thing we teach the fellows, the residents and the medical students, is that you validate those concerns and you listen to those concerns and you don’t ignore it or blow through it. That you absolutely…those are the most important parts of that conversation. And if you don’t validate it, the patient says, “Well, I have a fear of randomization.” And you go, “Hmm, there’s no such thing.” Then that’s not validating. And that’s not even listening. That’s just moving on because you don’t have that concern, but you’re not bringing that, you’re not validating the patient’s concern. And so you have to be very, very careful in doing that because there are multiple studies that have shown those are the big concerns.

Also, bringing up the things that are facilitators for clinical trials, that if there is an opportunity for reimbursement for travel or reimbursement for hotel stays or reimbursement that we say that this trial has a reimbursement program, or if we say that use other things that help facilitate clinical trials like speaking to the family, not just speaking to a patient, but speaking to the caregiver and speaking to the extended family that that patient will have a conversation with are really important conversation because the more people that you can talk to, that’s part of that patient’s decision-making group, which can be very different from patient to patient based on their culture, the more likely you are to get a consensus among that decision-making group for the patient to go on a clinical trial.

Dr. Nicole Rochester:

Those are great tips. Thank you both so much. It’s time to wrap up our roundtable. I must say I have truly enjoyed this conversation as always. I have learned a lot. I’m sure that our audience has learned a lot. In closing, I’m going to go to each of you just to share maybe one takeaway that you’d like to leave with the audience. So I’ll start with you Dr. Cole, one takeaway.

Dr. Craig Cole: 

One takeaway. I actually thought about this, but I think that the biggest takeaway is, if I can squeeze two in.

Is that, is to remember that basically they’re all patients want to be involved in clinical trials and the ownership of having patients on clinical trials is really on us to really talk to them over a longitudinal period, to talk about clinical trials, to have them involved. To not look at a patient saying, “No, they don’t want to be on clinical trial.” That you really engage that patient to tell them about really the incredible progress that we’ve made, how competitive clinical trials are and how exciting it is to be part of that research environment. And that would be my one, my two sort of closing thoughts.

Dr. Nicole Rochester:

Thank you. And what about you, Ms. Gleason?

Charise Gleason:

Dr. Cole said it well. Please discuss this with your patient. Listen to them. Listen to their concerns. Don’t make decisions for them based on bias that maybe you’re bringing in. Don’t make decisions based on maybe it’s too far. Patients drive hours to go on clinical trials, and let’s give them the information and have that conversation.

Dr. Nicole Rochester:

Wonderful. Well, thanks again to both of you, and thank you all for tuning in to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester. Have an amazing day.

PODCAST | HCP Roundtable: Best Practices for Talking About Clinical Trials With Myeloma Patients

 

Clinical trials represent tomorrow’s medicine today, yet not every patient confronting a myeloma diagnosis is informed about all available care options. Surprisingly, some patients and their care partners are never introduced to the possibility of participating in clinical trials. How can we alter the course? What strategies can healthcare professionals (HCPs) employ to effectively communicate information about clinical trials and guide patients through next steps?

Experts Dr. Beth Faiman and RuthAnn Gordon share important insights into understanding the critical role of clinical trial nurses and how they educate and mentor nursing professionals around best practices for broaching clinical trial conversations.

Download Resource Guide|Descargar guía de recursos

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester, pediatrician and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and overcoming practice barriers. Today we are tackling best practices for talking about clinical trials with myeloma patients. One significant challenge for some providers is initiating conversations about clinical trials and determining the appropriate timing of those conversations.

While clinical trials are often described as embodying tomorrow’s medicine today, not every patient facing a myeloma diagnosis is well-informed about all available care options. Astonishingly, some patients and their care partners are never even introduced to the possibility of participating in clinical trials. How can we shift this trend? How do we make these conversations a standard part of healthcare discussions at the outset of care?

What strategies can we as healthcare professionals employ to effectively convey information about clinical trials and guide patients and families through the next steps? We are joined today by RuthAnn Gordon, Director of Clinical Trial Nursing at Memorial Sloan Kettering. Ms. Gordon oversees clinical trial nurses, and develops and implements policies, procedures, standards, and systems to improve quality and compliance in the conduct of clinical research. We are also joined by Dr. Beth Faiman, a nurse practitioner and research oncology professional at the Cleveland Clinic. Dr. Faiman is an active author, presenter, and educator on the topic of multiple myeloma. Thank you both for joining me for this very important conversation.

Dr. Beth Faiman:

Thank you for having us.

Dr. Nicole Rochester: So we have a lot to discuss as it relates to best practices for talking about clinical trials with myeloma patients and their families. And I think this is always a topic that deserves so much conversation, likely more than we will be able to dedicate today. And while it can be a broadly beneficial conversation to have, in the program today we are speaking to the unique needs of myeloma patients and their families.

Some of the topics we’ll tackle today are understanding the critical role of clinical trial nurses, healthcare provider to healthcare provider recommended strategies to effectively communicate about pretrial eligibility determination and the consenting process, and how to educate and mentor nursing professionals in community hospital settings and beyond, guiding them to assist patients and families through the subsequent steps of participating in a clinical trial.

So let’s get started by talking about the role of clinical trial nurses. And, Ms. Gordon, I’m going to start with you. We know that research nurses are at the front line of treating patients. Can you speak to your role, and how you believe it has changed over time?

RuthAnn Gordon:

Absolutely. First, I can tell you that I’ve been doing research nursing for over 20 years and really love the work. I think it’s important for patients to have that support when they’re going through a clinical trial. And so we’ve done a lot of work to make sure that they have that support. So our role is to really be able to guide the patient through the journey, making sure that they’re educated on what they can expect on the clinical trial, and not only in terms of what maybe the drug might be doing them in terms of side effects, but what is their schedule going to look like? When are they going to have to come in? How long are they going to be here? What does that mean? And how do we support them with their quality of life while they go through all the responsibilities that they as patients have on a clinical trial, and what do they need to do to get ready for that experience?

And so we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gate keep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials. Because trials have changed so much in the last decade.

There’s so many more expectations. There’s so many more things that need to happen while they’re on the trial that really having that clinician doing that with the patient has improved our ability to do those kinds of complex trials. And so I think that really recognizing that having that clinician perspective at the partner, at the bedside with the patient has really helped us to expand the kind of trials that we can do.  

Dr. Nicole Rochester:

Thank you. And as a physician who acknowledges that the time that we are allotted with our patients is often very little, it really makes a lot of sense that you all are able to bridge those gaps in the patient education, and are critically important to this work. So thank you for the work that you do. Dr. Faiman, we know that patients with myeloma are living longer, and they’re dealing with a different set of challenges than perhaps they previously encountered. So can you speak to the critical role of nurses specifically in the myeloma trial setting today?

Dr. Beth Faiman:

Yeah, absolutely. You know, I must first start by saying that the successes in the treatment of multiple myeloma can be owed to the brave participation of the patients and the caregivers. So let’s not forget about the caregivers to support the patients with clinical trials. And I started as a clinical trials nurse in the 1990s managing these patients, and a nurse practitioner in 2002. And now my role is different also as a researcher. And so I have seen firsthand all these drug developments. And so the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important. And how can we support our patients who are now living a longer lifespan with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life? I know we have a very robust program to talk about later on, but I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.

Dr. Nicole Rochester:

Thank you. And thank you for acknowledging the role of the patients and their caregivers in all of the growth that we’ve seen in this field, in the research. Ms. Gordon, we know that diversity in clinical trials is lacking. Certainly there have been lots of reports about that. It’s gotten increasing attention over the last few years. There’s now regulations related to that. And while things are changing, we have a long way to go. And it’s also important that we celebrate the wins that we’ve achieved along the way. So my question for you is, do research nurses play a role in increasing diversity in clinical trials and also in trial innovation?

RuthAnn Gordon:  

Absolutely. Absolutely. I think that one of the things that is important is community outreach, right? And so we have a lot of opportunities for research nurses. Well, as in large academic settings, a focus needs to be on exploring ways to have partnerships with our community organizations. And once those connections are established, the research nurses can play an extremely pivotal role in ensuring that we’re not only at point-of-consent educating, but way before that, getting involved in pre-screening activities in order to ensure that we’re looking at a diverse population.

And also to help with providers that are in the community that may have more advanced questions, and having the nurse being partners with those clinicians in order to help them get through the questions that they might have in a more timely manner. And so the research nurses that are attached to those academic centers have a pivotal role in ensuring that the community centers have support.

And in doing the pre-screening, I think is an important feature of having the research nurse also be involved in that process. And so I think that…we know that the community has needs, and we know that we need to increase that access. So looking at opportunities to partner with those settings, to me, with the research nurse, is really critical, and I think is an important way that we can do that.

Educating is, I’ll keep going back to that, when you get hands on that patient, making sure that they understand what they can expect. And any misconceptions. Clearing up misconceptions about being on clinical trials is really important so that when you have a patient that is eligible, that they feel comfortable and confident in joining that study.

Dr. Nicole Rochester:

Wonderful. Thank you so much. Dr. Faiman, I’m going to come back to you. And my question for you is, can you speak to unforeseen or outdated practice-related barriers that may actually hinder the work of research nurses?

Dr. Beth Faiman:

Absolutely. So I wanna preface this by saying in my mind. I think that both oncology nurses and advanced practice providers are highly trained professionals that should function within a multidisciplinary team. So that team, just as you mentioned before, Dr. Rochester, was the physician has limited time, maybe even the advanced practice provider has limited time. How can we harness all of our resources to provide the best care to that patient? And clinical trials are one of them. Clinical trials will offer support so that the patient can have access to a pharmacist, a social worker, a dedicated nurse, a dedicated line to call if they’re having a symptom. But to speak to some of the outdated procedures, again, it goes to scope of the practice. No matter how highly trained they are experientially or with credentialing, there are practice barriers within the hospital organization within state laws.

The nice thing about clinical trials though, is that nurses in most institutions are very able to watch that clinical protocol. They’ll look for who needs to hold a medication because of toxicity, consult with the provider, and then they’ll say, “Okay, hold your dose. And when your toxicity resolves, reduce it one dose level, and come back for labs,” or whatever that would entail. So while there are outdated practices historically, I think that within clinical trials nursing it provides some more autonomy for oncology nurses, again, as a part of that multidisciplinary team to enhance patient care.

Dr. Nicole Rochester:

That’s wonderful. Are there any additional solutions that you think are necessary as we continue to see advancements in myeloma?

Dr. Beth Faiman:

Continuing education for these highly trained providers. And so those kind of…the education though, I’ll tell you, I think should focus a lot on the disparities in clinical research. One of the things I’m passionate about is highlighting the implicit and explicit biases that are in clinical research. Many of us will say, “Oh, that person won’t be a good clinical trial candidate because they live too far away or they don’t have a caregiver.” And so I’m really…I tell all of my nurses, nurse practitioners, even physicians, just ask a patient. Don’t think that because they live an hour away, they’re not going to want to participate in a well-designed clinical trial without even asking them. That doesn’t even allow them the opportunity to provide feedback.

And then not to mention all of the resources that are available to patients that provide, that participate in clinical trials. Many of the research studies will provide transportation or an overnight stay or some nominal, again, not trying to coerce the patients, but some nominal reimbursement for expenses to allow them to have access to that drug. So I can talk on and on, because I’m so passionate about this topic. But being aware that biases exist, through continuing education will hopefully enhance the diversity of clinical trials so that patients will be able to have access to care, and then that the clinical trial results are representative of the actual population of who we’re treating.

Dr. Nicole Rochester:

Thank you. I can definitely feel they’re both of your passion, and that’s why it’s so important that we have you here with us today for this conversation. So let’s shift focus a little bit and begin to talk about communication between healthcare providers to effectively communicate about pretrial eligibility determination and the consent process. So I’m going to go right back to you, Dr. Faiman. What do you think are the unique barriers that providers face when they’re speaking about myeloma trials to patients and their families?

Dr. Beth Faiman:

Right. So I think multiple myeloma is unique in that there are such an explosion of new therapies within the last decade. There hasn’t been such momentum in any other cancer such as multiple myeloma. But, unfortunately, there are challenges such as language barriers and communication problems that overarching with all the different specialties. The geographic I had already mentioned in a previous discussion about the geographic barriers to participate in clinical trials, not meeting inclusion criteria, I think it takes an astute nurse or advanced practice provider or physician to now sequence the therapy.

So for example, they have new therapies such as BCMA-targeted drugs that are available through cellular therapy trials or bispecific antibody trials. And without getting too specific into the drugs, you need a specialist to be able to say, “Okay, if I give you this drug today, that will exclude you from a clinical trial that might be very innovative and promising in the future.”

So those are unique barriers to accessing clinical trials or standard therapies for that matter because of the plethora of therapies that are available. So getting in, having patients get in with a myeloma specialist, they might not see them on a regular basis, maybe employ telehealth techniques, see them once and then virtually connect, share information about what might be available. Those are ways that you can provide access to patients, caregivers, and others throughout their disease trajectory because they’re living longer than ever.

Dr. Nicole Rochester:

Which is a wonderful thing.

Dr. Beth Faiman:

Yes. 

Dr. Nicole Rochester:

Ms. Gordon, you’ve been doing this for a long time. In your experience, what are tried and true strategies that healthcare providers can implement to effectively communicate with their patients about clinical trials when speaking to pretrial eligibility determination and the consent process specifically?

RuthAnn Gordon:

Yeah. Thanks for the question. I think that an important thing whenever we’re talking to our patients is to really understand where they are with understanding and how they learn. So it’s important for us to know what their health literacy is so that we’re making sure that we’re talking in a language that they can understand and using words that are appropriate. And so that’s key. Clinical trials have a lot of comprehensive and complex assessments that are needed for pretrial eligibility, right?

So I think it’s really important to make sure that we are being transparent as to what they can expect. We don’t want them to have surprises later on and then not feel like they want to continue with that process. So I do recommend to my providers and my research nurses, sometimes get out the hard stuff up front. Know if they’re going to be there for 12-hour PKs. Let them know. It shouldn’t be a surprise. And I think that that really helps patients. First, they get involved in the process, they know what to expect, and you can really have more confidence in their adherence.

The other thing is to allow time for the conversations, right? We need to allow time for our patients to ask questions. And the consent process can be lengthy. There’s a lot on the document. Sometimes it’s quite long. So you wanna make sure that they’re in a state of mind to have the conversation, that you allow time for questions, and that you make it an exchange between the two of you. It’s a dialogue. It should be. And you should come with understanding where they’re at; understanding a little bit about what’s going on behind the scenes, right? What’s happening at home is important as you’re talking about pretrial eligibility, as you’re talking about what they can expect on trial, just to get a full picture of them.

So I think that those to me are very helpful. Providing take-home information to the patient so they have something to reflect on later is also really important, because they’re not going to grasp everything in that one session. And consenting is like an ongoing process, right? You have one conversation, you probably have 10 more.

Dr. Nicole Rochester:

That is wonderful. Thank you so much for sharing that. And I really appreciate that both of you have highlighted the importance of health literacy, and meeting our patients and families where they are and making sure that they understand, and this idea that it’s a continuum: That there may be multiple conversations that will be necessary. Dr. Faiman, as the myeloma treatment landscape continues to expand thanks to clinical trials, how are clinical trial conversations evolving, and what do you feel should be top of mind?

Dr. Beth Faiman:

That’s an excellent question. Over 20 different drugs are available in various combinations. And so we talked about sequencing very briefly about having patients that have access to clinical trials, making sure they’re not exposed to this class, or maybe they needed to be exposed to this class of drug before they can get drug B, for example. And so sharing mutual information through shared decision-making, again, the patients sharing information and goals of care, the provider and healthcare team mutually sharing information, bring in your social worker or pharmacist, etcetera, and then you can mutually agree on a treatment for the patient. And so that is something we did not have 20 years ago. There were very few effective agents.

I like to remind patients when we provide clinical trial consent forms, that the language is written by lawyers, but it’s intended to protect you. I overemphasize that this is voluntary, and you can withdraw your consent at any time. But I try to go back and highlight why there’s stringent, plus or minus one day, maybe you can’t take off three days to go on a holiday weekend, because we really need to dose this drug on that day and obtain this blood information. So again, having the patients understand what’s involved in the clinical trials and then being able to provide information.

I like to also offer handouts. So the International Myeloma Foundation has clinical trials and diversity handouts. And then another one that I really like is by the FDA that describes the importance of clinical trials. I give that to everybody. So at diagnosis, if you’re on a standard care treatment, you’re not receiving a clinical trial. Everybody that comes into my office that I see for myeloma amyloidosis and related disorders, I would say, “You are a candidate for clinical trial now, but if I or somebody else does not involve you or ask you to participate, then ask us. Just ask us about clinical trials.” I even have a pen that says “Ask me about clinical trials” so that everybody can see it.

Dr. Nicole Rochester:

I love the idea of a pen. Wonderful. Well, let’s move on to how to educate and mentor nursing professionals. Both of you are nursing professionals, and you’ve clearly highlighted in this program so far the importance of the role of nurses in this clinical trial process. So, Ms. Gordon, I’m going to go to you. We know that one significant challenge for some providers is actually initiating conversations about clinical trials and also determining the appropriate timing. Can you speak to whether care variation may pose challenges in community hospital settings, perhaps compared to academic hospitals?

RuthAnn Gordon:

Yeah, absolutely. I think one of the most important things about when to talk to the patient is every time, anytime, right? I think that we should be asking them if they’re interested in clinical trials. If they haven’t been engaged in that, we should be talking to them about, “You know, there’s maybe a chance at some time in our partnership together that we will be talking about clinical trials.” And introducing that up front I think is really important so that we don’t leave clinical trials sort of as a last thought and the patient have that feeling.

And I think that for the community setting, that’s one of the things that may be a challenge, is because it is hard to put a patient on a clinical trial and run it from a community setting. So it’s, how do we give them the support and resources so that it’s not so hard and that they do offer it and talk to their patients as much as possible about it? And I feel like that’s what we need to do more with these partnerships with academic settings, is that we have to give them support so that it’s not so hard, and that that clinical trials first of mind to them when they’re planning care for their patients.

Dr. Nicole Rochester:

I see a theme here: Partnership, collaboration. Dr. Faiman, as we continue on this topic, and as someone who has been a consistent figure in the continuum of care, how do you guide other nursing professionals when it comes to clinical trial communication? Do you have specific tips or tricks or things that you can share with the audience?

Dr. Beth Faiman:

Yeah, absolutely. So I think I have a unique perspective having been a clinical trials nurse, nurse practitioner, and now I conduct, independently, clinical trials. And so I, throughout that whole journey, so I share my experiences and some of the key tips that I like to share with other nurses and healthcare providers is just coming to the patient level. And as Ruthie had said a moment ago, at each encounter you have that opportunity to educate that patient about their labs, what’s their remission status, their disease status, what drugs are they on, what worked, what didn’t work? And the ones that are in remission for a while, one, two, three, five years, we have discussions about next therapy. So I say to them, “Okay, now, we have a great clinical trial. I think everything’s going very well with your disease remission status, but let’s make sure that you know what might be the next best thing for you.”

And I start planting that seed, giving them information about next therapy so that it’s not that, “Oh my gosh, I thought I was never going to relapse and now I need another treatment.” It’s okay, we have a game plan, we’re here in this together, let’s get some information. So disseminating this at this critical information to nurses at national conferences about the different drugs that are available, the toxicities, and how to offer them to our patients, I think is really important. But really just cheering in that partnership, as we just talked about, is really key to success, I think.

Dr. Nicole Rochester:

Great. Well, it’s time to wrap up our roundtable. And I have truly enjoyed this conversation. I have personally learned a lot. I’m sure that our audience will learn a lot as well. So I’d like to get closing thoughts from each of you. So I’ll start with you, Ms. Gordon. What is the most important takeaway message that you wanna leave with other healthcare professionals who may be watching?

RuthAnn Gordon:

Thank you. First, thank you for having me at this. This has been an amazing experience, and I want the providers out there to not be afraid of clinical trials, to look at opportunities to work with nurses to help support you in those clinical trials, to have the conversations with your patients early and often, and to work with your community partners.

Dr. Nicole Rochester:

And thank you. Thank you, Ms. Gordon. What about you, Dr. Faiman?

Dr. Beth Faiman:

Well, I guess I would say never underestimate for the nurses, nurse practitioners, physician assistants, social workers, physicians, anyone on the healthcare team. Never underestimate the unique role that you enact in the care of patients with myeloma or other disorders. Use your voice to speak up. If you think a patient is a candidate for a clinical trial but that physician or other provider hasn’t recommended it to them, then tell them why. You can refer them yourself as well. Ask patients about barriers to participation. Is it physical, financial, social? You can’t take time off of work. And then provide that assistance in counseling. It takes a big effort to support our patients, but we would’ve never gotten to where we are with treatment of multiple myeloma in 2024 without patient participation in clinical trials. So whatever we can do to enhance diversity, minimize bias, and support our patients, please try to do the best to do your part.

Dr. Nicole Rochester:

Well, thank you both, Ms. Gordon, Dr. Faiman, for this awesome conversation. We have learned a lot about how we got to where we are with myeloma. And thank you again for pointing out early on, it’s the patients and their caregivers and their participation in clinical trials that has led to the landscape where we are now with so many drugs available. And that really highlights the importance of clinical trials. We talked about diversity of clinical trials. 

We talked about the implicit and explicit biases that all of us have, and that sometimes may preclude us from recommending trials for patients that can benefit from this therapy. And we’ve talked about the importance of having these conversations, not once, not twice, but every time that you are in the presence of a patient and their family. And also just the partnership and the collaboration that has already taken place, and that we hope to continue to foster as we move forward. So thank you both again, and thank you all for tuning in to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester. 

Thrive | Considering CAR T-Cell Therapy for Myeloma? What You Should Know Resource Guide

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Path to Empowerment: Multiple Myeloma | Clinical Trials

Path to Empowerment: Multiple Myeloma | Clinical Trials from Patient Empowerment Network on Vimeo

Have you ever wanted to a hear a first-hand account from someone who has participated in a clinical trial? Hear from two patients as they describe their experience with enrollment and participation in a trial. Also, keep watching for our LIVE Q&A session with patient panelists and Myeloma expert, Dr. Manni Mohyuddin as they answer questions received from our audience. 

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Path to Empowerment: Multiple Myeloma | Newly Diagnosed

Path to Empowerment: Multiple Myeloma | Newly Diagnosed

Best Practices for Finding Multiple Myeloma Resources

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Questions to Ask Your Doctor About Essential Myeloma Testing

Questions to Ask Your Doctor About Essential Myeloma Testing 

 

True Patient Empowerment: Bridging the Myeloma Patient and Expert Voice

Multiple myeloma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Myeloma program, which aims to bridge the myeloma patient and expert voice to build empowerment. 

Myeloma patient and expert

START HERE Myeloma Program Resources

The program series includes the following resources:

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the PatientExpert Q&A webinar, renowned multiple myeloma expert Dr. Sikander Ailawadhi from the Mayo Clinic shares his expert knowledge to help patients and care partners fortify their knowledge and confidence, while myeloma patient and Empowerment Lead Lisa Hatfield moderates the discussion and shares some of her views as a patient. Dr. Ailawadhi and Lisa provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Among some key points, Lisa shared her perspective about seeing a myeloma specialist, “There is great importance in seeking out the expertise of a myeloma specialist, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.

Dr. Ailawadhi provided his expert perspective about recent developments in multiple myeloma research and treatments. “Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell. 

Dr. Ailawadhi also shared his excitement about the future of  myeloma care. “So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.

Dr. Ailawadhi has also been very involved in researching and working to improve healthcare disparities, and he shared some of this knowledge during the webinar. “Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. I’m interested in these healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment.” 

Man using a tablet

Some program participants provided valuable testimonials about the START HERE Myeloma Patient-Expert Q&A webinar. 

  •   “I have been a myeloma patient for 8 years. This was one of the best webinars I have listened to. The speaker was excellent and the questions presented were great! Thank you for a wonderful session!”
  •   “This program was well thought out and I felt like Lisa was reading my mind! Super job. It makes living with a serious condition a little less scary when you see so many people have the same questions as you.”
  •   “Thanks for a great discussion. It felt like it wasn’t a lecture, but a conversation. Lisa is an inspiration to our support group members in South Carolina. We will be sharing this when we meet next week.”

We hope you can use these valuable multiple myeloma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

Best Practices for Finding a Myeloma Specialist

Best Practices for Finding a Myeloma Specialist from Patient Empowerment Network on Vimeo.

Finding a myeloma specialist is imperative to ensure you’re receiving the best care possible. If you’re unsure where to look there are many resources at your disposable. Watch as myeloma patient advocates, Lisa and Sujata discuss their experiences with finding a myeloma specialist and share valuable resources.

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Transcript:

Sujata Dutta:

Lisa what would be your experiences or maybe some of your thoughts around best practices around finding a myeloma specialist? 

Lisa Hatfield:

Oh yeah. That’s also a really good question. So I live in Boise, Idaho, and most of the people in my support group here have stayed local, which is great, but a couple of people… In fact, at the time I was diagnosed, there was a gentleman who has myeloma, he was in Seattle having a stem cell transplant, he chose to go there because they have a much higher volume of… They do a much higher volume of stem cell transplants, and he just felt comfortable having all of that, not just the doctor, we have good doctors here, they have a huge support staff in Seattle where they do stem cell transplants.

So I asked the group, our group leaders, and then the gentleman who was in Seattle, why do people go somewhere else? Why would they do that? Because it’s not quite as comfortable leaving home for a period of time, and he talked a lot about how he felt just it was a second set of eyes to look at his case and he had some other complications with his myeloma. So for me, the best thing that I did is when I was thinking about going to see a specialist, which we did pretty quickly because my spine was quickly deteriorating, we end up calling MD Anderson, but after that, so we were assigned to a specialist. 

 She works at MD Anderson and only sees myeloma patients. After that, I wanted to have my stem cells collected somewhere else, and I ended up calling the International Myeloma Foundation their info line, and they actually can provide a list of specialists in your area or help connect you, especially in times of… Now that COVID is starting to settle down, but during COVID, a lot more specialists were doing Zoom calls or telemedicine visits, so I think that they have a really great… For patients who are looking for a specialist, which I assume you also highly recommend because you’re… You’re in a great area for specialist, I’m not. So I would recommend seeking a second opinion from… Not a second opinion, seeking taking a consultation from a specialist, because as you mentioned, myeloma is so nuanced, it is very complex and complicated.  

Sujata Dutta:

Yeah and again, this highlights a difference. So I live in Minnesota, and I am blessed to be living here, being diagnosed with MM is not a good thing for anyone. But then being in a place where you have all the resources and the support that you need for dealing with something like myeloma is important, and I’m also in a system which is integrated. So obviously in Minnesota, close to Rochester Mayo. My Cancer Center, Frauenshuh Cancer Center is… It’s in St. Louis Park, and we have University of Minnesota, so these three institutes are integrated and patient information can be shared if needed. So when I was diagnosed, I actually did not have to go look for a hematologist or myeloma specialist.

My diagnosis was done by a hematologist in Frauenshuh cancer center, and then she sent my reports to Mayo to the Hematology Department for a second opinion. So for me, I think I’m so fortunate and they did all of this for me, I didn’t have to do that, and then I was anyways is in the care of an MM specialist, which I think is important. And again, reiterating what he just said is like they really know the disease well enough, like I’m not saying that our regular oncologist who don’t know that, but MM is so nuanced.  

If you have the opportunity, I guess you should try and be associated with an mm-specialist, a hematologist, in my case, it was laid out to me on a platter, I should say. I was very fortunate, but for the… I know a lot of people may not have the opportunity to do that, but if you have that, you should definitely try and consider that because it’s quite an important conservation, I think. 

 Lisa Hatfield:

It is. I think you’re right, I know my current oncologist now, my local oncologist, he is awesome, he’s incredible, he’s a great physician, he was a great diagnostician. He’s really good. My husband, I both really like him. He also appreciates that I go somewhere else. And so that is the one thing I know I was terrified. Asking my doctors, what do you think about me seeing a myeloma specialist. I only had one little bit challenging experience when I told one of the doctors I had seen, I want to go to MD Anderson, and he said, Well, you’ll just be a number there and they don’t do much more than we would do here for that piece of my care, that’s probably true.

And even though we have really great care here and a great medical system, and I feel super fortunate with my cancer, my local cancer center there, all of the staff there is excellent. My oncologist is awesome. I still strongly believe that my course might have been different had I not seen a specialist because it is so unique and every patient is so different, and also specialist have access to some treatments that I did not have access to here locally. 

So, I think that that’s super important. I’ll just mention really quick, since we’re talking about specialists, the IMF has their info line, which is… I had to write it down. The phone number is 1-800-452-CURE, which is 2873. So 1800-452-2873, and they can put people… They can direct people to a specialist, and then healthtree.org also has a list if people want to go on, maybe they’re in some dex accelerated insomnia, I guess some night they can go to Healthtree.org, and just… They can click on myeloma, there’s two tabs. Click on myeloma and I just scroll all the way down to patient resources rather than trying to navigate through that. And under patient resources, it says, Find a specialist.

So those are two resources the patients can have, I didn’t look for those, we just called MD Anderson, but I appreciate all your comments, and I think it’s great when people live near a center, I highly recommend going to the bigger center, especially if there’s a myeloma specialist my big fear was just offending my doctors here, and I think some people worry about that too, I’ve talked to other people in our support group.  

Lisa Hatfield:

I don’t know if you have any suggestions for that, Sujata, if you think that… I feel strongly now about people seeing specialists, but at the time I was nervous about offending my doctors…  

Sujata Dutta:

Yeah, and I can relate to that because you build this relationship, you really then you’re going to see them for however long, and so you really want that relationship to be maintained as it is in a good condition, so I totally understand why you would have hesitated even to think about, Oh my gosh, am I going to offend him her by saying, I want to actually see somebody, and I’m glad that your experience was good, meaning like your doctor was supportive of you actually seeing another one. I have also heard of other patients having to navigate difficult conversations, similar to what you share is like, why do you want to see somebody, like Do you not trust us or in that kind of conversations, which I think is a little bit difficult for the patient because we’re going through a lot anyways.

And I always believe like, this is not just for the patient. The entire family goes through the whole process of diagnosis, treatments, all and everything that ensues. So it’s really difficult for the patient and who’s already going through a lot, and I would really hope that the providers, the doctors understand the state of mind, and agree, if the patient wants to see somebody else to support them in that, in that decision-making, as I say, I have been really fortunate and I had a really good experience, but I have, as you said, None of others who have not had as a pleasant of an experience, I’ve also known of patients who do not have those… 

Like you were able to go somewhere else, from Idaho to MD Anderson, I know of some people in some different states who do not have that kind of support, and in fact, they have pretty challenging systems, like there is a person in my support group who lives in Alaska, and for anything, any emergencies, they have to fly down to Seattle.

So, I can only imagine what that must be like to be in that situation where you’re going through so much and then you have to figure out the logistics and the tactical things about how do you reach from point A to point B and then start with whatever procedures so thank you so much for sharing those resources. I think they’re going to be really useful for folks that are listening to this call. Those resources are really, really important. I guess we can also say PEN also has some really amazing resources that folks can leverage as they navigate through this difficult journey. 

Lisa Hatfield:

Yeah, I agree with that. And I was going to mention that, so people… When you talk about resources and accessing the resources that that is a big problem, we see that here, because we’re in a more considered more rural area, and so we draw from multiple rural states, our support group does, but also there’s the financial difficulty. So, I’ll just throw that out there too.

Those are two really good resources that I mentioned before, but if people want to reach out to me at PEN or send an email, that would be fine too. I can help direct them to decent resources or some place they could at least start looking for resources because it is really important for people to get that consult from a specialist, I think so… Yeah, I appreciate that.  

What Can I Expect During a Bone Marrow Biopsy?

What Can I Expect During a Bone Marrow Biopsy? from Patient Empowerment Network on Vimeo.

Myeloma patient advocates Lisa and Sujata share their experiences with bone marrow biopsies – what to expect and how to prepare.

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Transcript:

Sujata Dutta:

And then there was one more thing that you spoke… When we started with the conversation, BMB. Let’s talk about BMB the dreaded swear word.  

Lisa Hatfield:

It is next to dex. I think it’s the second. Maybe it’s equal with Dexamethasone, people talk about dex being the worst thing about myeloma, the BMB, the bone marrow biopsy. Yeah. Did you have one? Right when you were diagnosed?  

Sujata Dutta:

Yes, and it wasn’t a pleasant experience. I was obviously, as I mentioned, I had a surgery an emergency surgery, it was pretty… It lasted for six hours and I was wrapped up in all sorts of things, and then I had to have the BMB while I was on an ICU bed, so… Totally not in the best place to start, and it was the first time I was going to have it. So it wasn’t a pleasant experience. It was super painful, they could not sedate me for obvious reasons, because whatever was going on, but post that I had the next BMB, I’ve had a couple… I’m not sure that’s a good thing or a bad thing, the next one, I had it in Mayo and I learned that I could actually be partially sedated and so I wouldn’t feel anything, which was like, Oh my gosh, I thought that was the best discovery mankind had ever made. And ever since then, I’ve always requested for being seated through that process, because otherwise it can be really, really painful, so I don’t know if you want to talk about what the procedure is. I am going to assume some of the folks here have been through this, unfortunately. 

 
Lisa Hatfield:

Yeah, because the bone marrow biopsy is the only way to actually see the myeloma cells, the cancerous plasma cells, it is necessary, it’s also necessary to get it done so they can diagnose the genetic abnormalities, the cytogenetics. But yes, I actually had a little bit different experience. So again, every patient is so different, I prefer not to be sedated because I don’t like sedation, I don’t like the way I feel, I don’t feel good when I have it, so I did have it done and I was… Where I went the first time they didn’t offer sedation, it was, this is 20 minutes, and it wasn’t comfortable.

I will admit that I didn’t like the worst part for me was when they numb the area with lidocaine, they gave you the little shots before they do that, so I’ve had six of them total now, but I’ve had the most recent one. The sixth one I had, they did sedate me and I think it’s conscious sedation, so it’s like you said light sedation, I don’t remember any of it, but I didn’t like it because I had two days of recovery from the anesthesia, so… Yeah, so I think the… 

Going back to somebody who’s maybe anticipating it for two nights straight, I couldn’t sleep, I was so nervous about the bone marrow biopsy, I just thought This is going to be so painful. I had excruciating pain in my spine anyway, ’cause it was collapsing as I was going through, I had radiation first, so the bone marrow biopsy didn’t seem to affect me quite as much the first time, but this last time, it seemed to be a little more uncomfortable, especially afterwards, but from my understanding from the bone marrow biopsy, they go in either with the needle, basically the thick needle or where you go to the Mayo Clinic in Scottsdale uses as a drill, and I guess that’s supposed to be faster, and a lot of people think it’s more comfortable, go into the bone marrow and try to take some of that bone marrow out… The soft part of the bone out, they actually take two different samples, but I think the most, uncomfortable part if you’re not sedated, I think is that vacuum-type feeling, and then there’s like a pop… And that was super uncomfortable. I thought that was probably the worst part of not sure if it’s pain or discomfort or what, but I do remember that looking back though, now, every time I’ve had one, I always say that wasn’t so bad.  

I remember it, but it wasn’t… I don’t remember it being too bad, so what they do is they will collect enough… They usually have a lab person available as they’re to make sure that they have enough of a sample and the right… The right cells and enough of it, so they usually will only go in once I had one where they had to go back in a second time to try to aspirate some more… The bone marrow, they’ll look at that takes a few days to go through the lab and look at that and see what your genetic abnormalities are with the myeloma cells themselves, and what the volume of cancer cells is in your bone marrow.

But yeah, I just remember, either way, if you’re sedated, you don’t feel it at all while it’s happening, if you’re not sedated, you can feel, especially when they’re numbing it up, the lidocaine shots and that stings, it’s a sting three or four times and takes a little time for it to set in, and then that suction that pop, that’s what was the most uncomfortable, and I think that really the most pain that I felt was the bruise-like pain, the couple of days afterwards, they’re not walking, but just sitting on it is bandaged up really…  

Well, you can’t take a shower for a day, but when I would go to sit on it, it just got bruised, but… Yeah, the bone marrow biopsy, nobody looks forward to those… It’s nice to know that there is something in the works, even mass spec testing, which isn’t quite as sensitive… It’s nice to know that there’s something that works, to maybe look at other ways to test for the myeloma. Yeah, not fun. It’s a necessary thing though that when people are diagnosed with multiple myeloma.  

Sujata Dutta:

That’s absolutely the true statement. I don’t like it at all. I am also anxious before I have my… I’ve had four now, so… And every year I’ll have to have one, so I know that that’s a necessity, as you said, I do feel anxious, but I keep telling myself this is needed to assess overall disease involvement and hopefully the results are better than last year, so I kind of… That’s how I sort of create some positive energy around that experience because it’s not a pleasant experience, and as you said, it does hurt for a couple of days after I actually have… Sometimes it goes on for a week that I have, or discomfort, but again, each to his own people might have different experiences, but I think the more we talk about it, the more we hear other people’s experiences, we might just feel like, Hey, mine was not all that bad, I look at her, him, what they’ve gone through and things like that, or even just thinking like… It’s different, it’s nuance.

Everybody goes through different experiences like you prefer not being seated, I prefer being sedated, so it depends on each one’s experiences, but the bottom line is there are options available, everybody understands, it’s a difficult procedure, everybody understands it’s not pleasant, nobody wants to put the pain through that if they had a choice. 

Right now, we don’t have one, so I think just thinking about in a positive way and embracing it, I guess might just help, it helps me, so I’m hoping that it helps others as well, just changing the perspective a little bit.  

Lisa Hatfield:

Yes, so who does your bone marrow biopsies? I’ve been to… Sometimes a nurse practitioner does them and sometimes an RN does mine, and I know some of our local doctors do them, oncologists do them, what type of professional does your bone marrow biopsies?  

Sujata Dutta:

With Mayo, I’ve had it twice there, they have specialists, they have a whole team that does obviously Mayo, they do like MM treatments, like they have 500 patients doing biopsies every year. That’s what I heard. I had mine there too, so it’s a well-oiled machine, they just have departments for every little thing, so that’s different, but even when I do it with my local cancer center, they have a specialized team, so it’s not the nurses, there’s a specialized team. There’s a different procedure.

Again, it’s different to how Mayo does it. When I do it at my cancer center, they actually do a scan before I have a BMB, and to make sure that they’re going in the right place. Which I thought like Wow, that’s great. Just as a second level of precision, but yes, that’s different to Mayo, but it’s always like a specialist doing it for me.  

Lisa Hatfield:

Yeah, and then how often do you have to have those on a regular basis, like annually or just as things change with treatment? 

Sujata Dutta:

Annually. So, only just… Obviously, for my diagnosis I had that and then six months later, and I had a stem cell transplant and I did a BMB prior as well then, a couple of months after I did that again. So that was the only time and it happened more regularly, but since then it’s been like yearly. 

Lisa Hatfield:

Yeah Okay. Yeah, the bone marrow biopsy is interesting because I know a lot of… There’s different ways that they test that and now they have a more sensitive test, so everybody has different..That’s the other part of alphabet soup. Some people have something called flow cytometry or NGF or NGS. So anyway, yeah, it’s kind of interesting that everybody will have different ways of going through that or different experiences, so anybody who has questions, you’re welcome to reach out to me at PEN or any of the other resources that are out there.   

How to Approach the “Alphabet Soup” of Myeloma Treatment

How Do I Navigate the Myeloma Alphabet Soup? from Patient Empowerment Network on Vimeo.

After an initial myeloma diagnosis, you’re plagued with various acronyms referring to treatment, different mutations, and much more. Hear from myeloma patient advocates, Lisa and Sujata, as they break down how they’ve navigated and continue to navigate through what they deem the “alphabet soup” of myeloma treatment.

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See More from START HERE Myeloma

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Transcript:

Lisa Hatfield:

Hi, my name is Lisa Hatfield, and I’m a myeloma patient. I was diagnosed back in 2018. I am an Empowerment Lead at Patient Empowerment Network, and one of the things that we are frequently asked is, What are all of these letters and acronyms when you’re diagnosed with myeloma? So just a nutshell, this is why myeloma is so complicated and confusing based on my story. So, I was diagnosed, like I said back in 2018, I have kappa light chain only myeloma. When I was a newly diagnosed myeloma patient, which is MDMM versus RRMM, which is relapsed/refractory multiple myeloma patient, I have kappa light chain only myeloma. 

 I have…and I’m just going to spew out all of my letters and numbers, I have translocation 11, 14, I have monosomy 13, I don’t have an M spike, which means all of my antibodies are normal, my IgM IGA, IGG are normal. After a surgery and radiation, I went through six months of KRD, followed by another three years of just the R, which is Revlimid, every month I have…in addition to my myeloma labs, I have a CBC, a CMP. Every year I have something called a BMB, bone marrow biopsy. I have a PET CT and MRI every year, and then I do something with my bone marrow biopsy to check for something called MRD status by NGS, which is currently, I’m MRD positive at 10 to the minus 6. So, all of those letters, it’s just a big alphabet soup for people to try to understand myeloma, it gets really, really confusing.

One of the things as a myeloma patient that I recommend to people is the IMF, The International Myeloma Foundation, just to add a few more letters to it, you can look at their website at myeloma.org. They break down each of these phrases and words and letters and acronyms and whatnot. 

So newly diagnosed patients and patients who have had myeloma for a while can understand all of these letters and all of these numbers and what these genetic mutations mean and what the tests mean. So, I guess, Sujata, I know you’ve been through this too. We’re just having conversation. How did you…when you were first diagnosed, I’m curious too, and for other patients, how did you get through all of the letters and things being thrown out at you.  

Sujata Dutta:

Yeah, Lisa, this is funny. So, my name is Sujata Dutta, I’m a board member at the Patient Empowerment Network, and I’m also an MM patient. I was diagnosed with multiple myeloma in December of 2019. And Lisa, you summed it up really well. This alphabet soup is actually a real thing. The first time when I got to know about it, I actually, obviously, like many, many folks that I have known that are on this journey, it comes up as a surprise, it just is… For me, it was interception, I can actually say that word and spell it, I think, but at the time when I was diagnosed, I had no clue what the doctor was talking about, I had this massive inflammation of my lymph nodes and I had to have emergency surgery ’cause the lymph nodes had caused damage to my big intestine, and then we did some research, we as in the doctors, and after a week post-that surgery, I was diagnosed with multiple myeloma. Again, I can say that today, but when they told me about multiple myeloma, I’m like, I have no clue what you’re talking about. They had literally had to dumb it down and say this is a kind of a blood cancer… 

I’m like, oh cancer all right then. So, the alphabet soup is actually a real thing, I do have M-spike Lisa, unlike you. My kappa light chains are fine, but it’s been a long journey and not there yet, so still…my goal is to achieve MRD or remission. I’m not there yet, I still have involvement through my proteins, not so much in the bones, so let’s break that down a little bit, Lisa.

Let’s talk about that alphabet soup and how do you navigate that through as a new patient, I would say not even a new patient, like an existing patient like me, sometimes I’m like baffled, like, “Oh, my gosh, what is this report saying to me?” So, thanks for sharing that resource about IMF but what else…as you started, just think about those early days, weeks when you were diagnosed and all of these terms were thrown at you, how did that feel, and how did you overcome some of it, if not all?

Lisa Hatfield:

That’s a good question. So, I went in to see my, my local oncologist here, after I’d gone through radiation surgery down at MD Anderson because I was going to have my chemo here, and in his office, there was a poster up for a local myeloma support group, which I was not excited about, I thought, Well, maybe I’ll go, but I don’t want to…I already feel down enough that I’ve already overwhelmed enough with my diagnosis, but we just…I called the lady, her name is Sheri, called her up, we talked about myeloma, she had myeloma for seven years, and I was super inspired by that, so we showed up, I had a walker I and walk with a walker because of all the damage to my spine and showed up limping along with my walker, and everyone there was talking about, “Oh, you’re newly diagnosed, what is your M-spike?” That was something new that I hadn’t heard, and I hadn’t had that discussion with my doctor, I didn’t realize at that time, it was because I did not have an M-spike.

So I think, like you said, it’s overwhelming enough to just receive that diagnosis and in my mind, I remember thinking back, Okay, if I talk to a new patient, if I can get through this and make it a few years out, what are the things that were the most confusing to me, and I think understanding the type of myeloma, if I were to… 

If patients were to ask me, understanding the type of myeloma patient has, the genetic mutations and understanding what their M-spike is or is not, if they are just…if they’re a light chain, only if they have light chain only disease. Those would be the things I think, because it is so confusing to patients in them, I think as they go along, maybe they can ask their team, “Well, what does that mean? Or what do those letters mean?” Yeah, it’s okay to ask those questions.  

Sujata Dutta:

Absolutely. Ask as many questions as you can, you’re encouraged as a patient to ask questions or at least I was. I think what is also important to note is like with MM, it’s an individual, it’s a very individualized sort of a disease, so although we put it under the bucket of multiple myeloma, everybody experiences it differently, they even have reactions to medication very different, like just yesterday I was talking to somebody in my support group and they had a really different experience with one of the drugs that I take regularly, daratumumab (Darzalex) every four weeks. She just had the first dose and it was such a bad reaction, she ended up in ER.

So not scaring anybody, I’m just saying everybody has different reactions, somebody might take to some medication really well versus others may not…and just between the two of us, we have different types, you don’t have that, and so there are these nuances, which I think it’s just important to acknowledge, there’s nothing to be scared of…it’s just acknowledging the difference of how multiple myeloma works versus some other cancers maybe…I think it’s important. And you brought up a good point about trying to understand the labs, we don’t have to be experts. 

I don’t think I want to be an expert. I have folks that are experts that will take care of me, but just so that I understand the basics of it, and then I’m able to ask questions for my own self, like educating myself. 

Path to Empowerment: Multiple Myeloma | Treatment

Your Path to Empowerment | Myeloma: Treatment from Patient Empowerment Network on Vimeo.

Navigating treatment for multiple myeloma can easily become overwhelming. What education can you receive prior to treatment or what impact will a specific treatment have on your daily life? Hear from a panel of myeloma patient advocates who share their personal experiences, advice and various resources.

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Transcript:

Lisa Hatfield:

Okay, hello and welcome to our Path to Empowerment Living with Multiple Myeloma program here at Patient Empowerment Network. I am the myeloma Empowerment Lead here at Patient Empowerment Network. My name is Lisa, and I’m also a myeloma patient diagnosed back in April of 2018, I started having a pretty significant pain in my hip about one or two years before I was diagnosed, how to spine x-ray didn’t show anything in about five months later, went in for an MRI and was diagnosed with a large plasmacytoma that had eaten away a part of my spine, I have been fortunate enough to have care at MD Anderson. I was able to go down there, both for my spine and for my cancer. I met with the radiation oncologist immediately upon going to MD Anderson, who had me go through eight sessions of radiation. My treatment consisted of the radiation and then spine surgery to support my spine because my spine was compromised and close to the tumors close to my spinal cord, all of that was followed by… I met with myeloma specialist, Dr. Karina Patel at MD Anderson, and she wrote my prescription and orders for chemo to be done back in my hometown in Boise, Idaho. 

So, I came home for six months of chemo, and I had it every week for three weeks on one week off, and my chemo treatment consisted of KRD, which is carfilzomib, Revlimid and Dex also known as Kyrpolis, Lenalidomide and Dexamethasone. I did have that for six months on, like I said, three weeks on one week off. Had a great response. My last treatment that I had, I followed that up by going to Seattle to have stem cells collected and was also re-staged, my cancer was re-staged in Seattle was MRD negative, ten to minus five, but at that point, I opted to wait to have my stem cell transplant until first relapse, and since then I’ve been on maintenance therapy for about three and a half years, Revlimid also called Lenalidomide was on it every day until about a year ago when I was given one week off after three weeks on and for the past 10 weeks, I’ve been completely off of maintenance therapy due to side effects of getting progressively worse, including neuropathy and digestive side effects, so that is my history with myeloma, we are very fortunate today to have two other patient panelists, Jim and Sheri, who will introduce themselves. 

I’m going to back up for just a minute, people like to know the type of myeloma we have, I have kappa light chain only myeloma, which means I do not have an M spike, I’m followed with the free light chain that shows kappa light chains in my blood and also a 24-hour urine, that shows Bence-Jones proteins in the urine. So, kappa light chain only, my cytogenetics, I feel like I have to share my zodiac side too, but my cytogenetics are translocation, 11, 14 and monosomer 13. So we’ll move on to our patient panelists, welcome them. Sheri, she’s a support group leader for the International Myeloma Foundation here in the Treasure Valley and Boise, Idaho. So Sheri, if you could just introduce yourself, please, and explain your history with myeloma, the treatments you’ve had, current status and type of myeloma. That would be great. 

Sheri Baker:

I’m Sheri, and I was diagnosed in October 2011 with IgG Kappa myeloma. We found my myeloma because through blood work to check, just kind of more of a routine check, it was discovered that I had kidney failure, and my kidneys were only functioning at 8%… Normally should be 100% or close to that, so 8% kidney function. Didn’t know why. It took a couple of weeks and a bone marrow biopsy to figure out that it was because of myeloma. So, IgG Kappa, but no cytogenetic markers now, high risk markers, just standard, normal myeloma, but it did attack my kidneys versus my bones, very minor minor small lesions that I had. Anyways, that was 2011, in October, within a couple of weeks, I started dialysis and started my first treatment, which was in 2011, they weren’t really doing doublets and triplets very much, so it was, well, a doublet, if you want to consider Velcade, which is bortezomib plus Dexamethasone. So, I was on those two, and I did four cycles from October to the end of December to get me ready and see if I had a good response for a stem cell transplant. 

I had a stem cell transplant in March of 2012, I got a very good partial response for my stem cell transplant, still had a small M-spike, but because of the dialysis and my kidney issues, I decided not to do maintenance therapy, I’m really the only or the standard maintenance therapy was Revlimid, and I know Revlimid can be tough on your kidneys, so I decided after researching it and talking with my doctor not to do maintenance therapy, so I was off of therapy for two years, but my numbers had started to increase. So in April of 2014, when faced with having to go back on something, I asked my doctor if I could do Velcade again because I’d only done it for four cycles, really only about two months’ worth, and he looked into it and said, yeah, so that’s what I did for six years, Velcade as therapy, maintenance therapy, if you want to call it that, but I did it solid three weeks on, one week off for six years, when that started to quit working and I started looking at changing treatment again. I changed to Darzalex Faspro, Revlimid this time at a low dose and Dexamethasone. 

And it has been two years since I started that treatment. I’m now on monthly Darzalex, and I stopped the Revlimid in February because again, lower blood counts and it could be tough on your body, and I stopped the dexamethasone as well, so I’m only on Darzalex once a month, and it seems to be holding. It did finally put me into a zero M spike, complete remission, which I really hadn’t been in 10 years, so that’s a good thing, and I’m still holding my own with that right now, so that’s my story. And I was able to get off of dialysis. I was only on dialysis for two years, and my kidneys recovered just barely enough to stop dialysis and they have slowly improved over the 10 years or over the eight years, and my kidney functions generally around 25% right now. So that’s where I’m at. 

Lisa Hatfield:

Thank you. Well, thanks Sheri. Jim, if you would please introduce yourself and give a little bit about your history and the treatment that you’ve had. 

Jim Bond:

I am James Bond, and I’m the real James Bond, I’m not the movie actor. And my beautiful caregiving wife, Kathleen, if she were here with me, you would believe that I am the real James Bond. But I was diagnosed in 1992, so that was 30 years ago, and I was at stage three with Kappa light chain, like you, Lisa, and I’ve had some treatments during those 30 years, and I can recap those for you. It’s pretty easy. The first 10 years I had three transplants, there were no current day modern drugs for myeloma available, and I was one of the pioneers in the clinic trial that got Velcade approved. In fact, it saved my life when I was told to go to a hospice and I was lucky enough to get in the trial, and that was up in Boston, away from our home, and home run got saved and Velcade got approved, and I’ve really not been in danger with myeloma since then, although I have been in a total of six clinical trials, including Revlimid that you’ve been on Lisa and help that one get approved, but ever since, Velcade my myeloma has not been life threatening.   

Another highlight of the treatments that you asked her to sell is that I did get treatment-related leukemia, and they’re not… Positive why. One of my transplants, I had to have full body radiation as part of the protocol, and I took some other drugs like Melphalan and we all have to take for transplant, but those were leading suspects of what may have caused the treatment-related leukemia. But I was very, very fortunate and they were able to find an unrelated donor, and I haven’t matched my stem cells, and I had a fourth stem cell transplant over a decade ago, and that put the leukemia in remission and where I remained today on both cancers side note to the last allo transplant, my four transplants break down two autos and two allos, but my last allo was from a woman living in Germany and it kind of explained to me why ever since that transplant, I’ve had this urge to go to October Fest. 

More seriously, I’ve had some serious side effects, the most prominent of which is graph vs host disease from the other person cells, which affects my skin, my gut, and surprisingly the surface of my eyes. I had to get special contact lenses that I have to delicately put in, take out every day to return my sight to normal, but it’s worked out really well.   

Lisa Hatfield:

Thank you, Jim. And I’ll just provide a quick reminder that this program is based solely off of our patient experiences and should not be substituted for medical advice, so please see your physician or any qualified healthcare provider if you have any questions about your medical conditions including myeloma. You do have an opportunity to ask questions of the patient panelists at the end of this program. If you use on your zoom, there should be two little buttons one a Q and A function and one a chat box, submit your questions there and are behind the scenes, producer will be watching for those questions, and our patient panelists are available to answer those questions at the end of our program, just that reminder, but with our medical disclaimer.  

So, we’re going to jump right into our questions that we have now for the patient panelists, and Jim, I think I’ll start with you, you already established some of the treatments that you had, but sometimes when I go to our support group meetings for which Sheri leads this group here locally, people will say things like, I really wish I had known this about treatments. Is there any one or two things that you wish you had know looking back now, that you wish you had known going into any particular treatment that you do know now?

James Bond:

Yes, there are a couple that stand out and they’re the subject not only of my book and our talks, but I started doing episodes, four-minute episodes on YouTube, and one of those episodes is on my experience with using steroids, which one or both of you mentioned Dex is one of the components to one of your treatments. So, dexamethasone is the most powerful steroid that I use, and it was required with getting me ready for my first second, third and fourth transplants, and it was also a steroid that was used for a while I did do maintenance before I got leukemia. And the thing I wish I had known about steroids from beginning is after I had a hip or one of my two hips replaced, the hip surgeon told me, Jim, you cancer patients are higher risk for needing to get a hip replaced. Something called avascular necrosis because of the long-term use of steroids that you’re required to do. Well, when I found that out. It’s been 15 years ago. I started challenging my doctor, I said, look, can we try that maintenance that you’ve got me doing, but do it without the prednisone steroid, and he balked at that because that wasn’t the way that they were doing it. 

But I said, how can we work it out? Because I’d really rather not get the other hip replaced, lower my risk, and we agree to something in between, and he said If you’re willing to come in here every six weeks and monitor your blood, that I’d be happy with you staying on no maintenance. So that’s really what I’ve been doing. And I know that earlier on, I probably would stop the prednisone earlier on, there’s nothing I can do about the dex required for getting me ready for the transplant. That was part of my story. But that would have been helpful to know.  

 Lisa Hatfield:

So, one of the questions too that somebody asked me a while back, had been diagnosed for a few years, gone through induction, stem cell transplant, lived in the Boise area, had never seen a specialist. Can a person, if they haven’t seen a specialist from diagnosis or can they seek advice of a specialist anywhere during their myeloma journey?   

Sheri Baker:

Yeah, I think so, for sure. For the first, probably two and a half years, maybe. I didn’t consider seeing a specialist because what I was doing was pretty straightforward, I had standard risk myeloma, and I was a newbie, I was a rookie, and I just kind of went along with what my doctor said to do, and I don’t think I did anything wrong; I don’t think I made a wrong turn; I should have done something different. But the more I started reading and researching, the more I realized that being with someone who deals with just myeloma and a large number of myeloma patients, because like Jim said, everybody’s myeloma is different, so when you see someone who’s dealt with a variety of myeloma cases and can see the differences, it’s helpful, so that’s when I saw… It was probably closer to three years in my journey before I saw a specialist, and then I didn’t have… And I saw that specialist, I saw her for a couple of years, once a year, kind of a thing, and my myeloma was stable. Once my myeloma changed and I wanted to see somebody closer to home, relatively speaking, I changed specialist because it was easier to see and travel to, and again, I knew my myeloma was on the rise again, and I wanted to get a specialist opinion, because there are so many choices of treatment and this was just two years ago. 

And the landscape of myeloma had changed drastically, so I really wanted to see a specialist and find out… Now, what do I do now that I’m making a change? And so, I think anywhere in your journey, if you’ve never seen a specialist, you can certainly see one, and I know as a support group leader, I’m very happy that I have convinced some members of my support group to see a specialist because their myeloma is getting tricky to handle… And they need someone who has seen more cases and has a better idea of where, what they should do at that point. 

Lisa Hatfield:

How did you choose your myeloma specialist? 

Sheri Baker:

It was funny, my husband said, we’re going to go see a specialist, we’re going to see one of the best, so we kind of looked at the top 10 list, we went off of a website that had done a lot of research and ranked enlisted specialists and this specialist at Duke, my son was living in North Carolina and we thought, Well, she’s one of the best. We can visit him and we can go to the specialist, so that’s why we chose to go all the way across country and see a specialist. 

Sheri Baker:

When I changed specialist, one of the reasons was my son had moved back to Idaho, I didn’t need to go to North Carolina anymore, and I had met this specialist in person, really liked him, had a good rapport, my husband met him at a patient conference and really liked him as well, and he said, we should see if we can switch. And see him now because it’s closer, and I just really like him, so that’s how I made my decision there. 

James Bond:

One of the questions on the homework was, so what about access to treatments? And I’d like to say something about that. We had to pull up stakes at the drop of a hat and relocate 600 miles from Cleveland, Ohio to Boston, Mass for this all important turned out to be a Velcade trial and we were able to do that financially. I had a great job, I was still working, great insurance. And my wife and I looked at each other and thought, what about people who don’t have the resources to do this? And my wife is a 40-year volunteer for the American Cancer Society, and she’s become a real leader with them, including the national board of directors. Well, she pointed out that that’s why the American Cancer Society has over 30 hope lodges around the country, where cancer patients and a caregiver stay for free while they’re being treated typically for an out-of-town treatment they can’t get at home. 

And that’s really good information for people to know because even though there’s only 30, there are a lot of cities and states in our country, the American Cancer Society has a relationship with at least one hotel chain where they can help with very inexpensive accommodations while you’re out of town for cancer. So, the American Cancer Society, 24 hours, seven days a week, support line. It’s really some place to look, if you’re having trouble with finances on getting out of town. 

Lisa Hatfield:

Thanks, Jim. And you mentioned something too, I think we’re all on board with our feelings that seeing a specialist is critical on your myeloma journey at some point, however, that requires the financial means to be able to do that, to be able to travel, to pay any co-pays or out-of-pocket expenses that you might accumulate from that, or even when we went down to MD Anderson, I was scheduled to go to appointments for five days, we stayed down there for a month because I had to have an emergency spine surgery. All of those are unexpected expenses, so I just want to say if anyone has questions, as they’re watching this feel free to contact me. I have an email, cure4mm@gmail.com. It’s the number four. I won’t know all the answers, I have a lot of great resources, including Sheri, who leads our support group to help try to find resources for people who are seeking a second opinion or a myeloma specialist. Even if it’s just once during your myeloma journey, please reach out because there are resources out there, whether it’s through the IMF or the LLS, the Leukemia Lymphoma Society, there are resources, it’s critical to seek out the advice of a specialist at least once during your myeloma journey. 

So just wanted to put that out there. And Jim, I do have another question for you. I did read your book, I have it right here. Thank you for doing that is a very easy to read book and it provided a great perspective on because myeloma is incurable, how can we live with this for 30 years, and still live our lives while going through treatment after treatment, and you had great insight and inspiration in your book about that. So, thank you for putting that out there, but it brings up a big question that I had, and I still have… You had talked about the plasmacytoma that had developed on your head and had radiation, and I think it was that point, I have ear marked in the book, one of my big… I’m terrified when I ask a question of a doctor, because I’m afraid it’s going to appear that I’m questioning their expertise, if I disagree with the treatment or if I’m uneasy with the treatment. I have a hard time saying, hey, I think that this might be a better option for me. Well, in your story, you had during this time of this plasmacytoma, you mentioned that you were on a maintenance drug, your doctor, one of your doctors wanted to add a second drug, I believe, to your maintenance regimen, just to make sure that everything was knocked down as much as it could be your abnormal proteins for increasing, you felt you just want to increase the dose of the one drug you were on rather than adding another drug. 

My question for you is, you did approach your position, you had a method of doing it… How did you do that? 

James Bond:

Yes, that was the most contentious I’ve ever been with my myeloma expert, Paul Richardson. He and I and my wife are really good friends, I mean that. We’re talking close friends. So, I was at that point where I was on a little bit of a maintenance drug, I think it was Revlimid and my protein started to go up, and Paul wanted me to add Velcade to it. Well, my strategy is I wanted to hold on to Velcade in case my life was ever in danger because it was one that really saved me when it was, and so I resisted and I said, Paul, let’s just try increasing the dose. And he resisted, and there was a little contentious over the telephone, finally… And here’s the key, we have had a really good relationship with Paul’s oncology nurse, Debbie. Debbie is now retired. Debbie said, Jim, let me talk to you privately. She and I got on the phone primarily without Paul, and she said, Jim, here’s the thing, you’re not going to convince Paul based on the myeloma knowledge, he wins that argument every time because he knows it. She said, what you can make progress on is what you’re comfortable with, and if you come out of it at a standpoint say Paul, I’d be more comfortable trying to increase my dose and give it a month and see how that goes. 

That worked like a charm. And so, it was a study nurse who got involved, saw that she had two people who were kind of dug in and listened to her closely, and that really mitigated what could have been a difficult situation. Here’s the really surprising thing and great thing is then after I had the dose, and he had me do another this and another that to make sure there was no other problems in my body, and when the protein went down at the higher dose, I thought he might be a little bit remissed, dumb luck or not my call worked out. First thing out of his mouth on the phone was Jim, good call. Good for you. So that’s the kind of guy he is. He puts ego aside and he just wants to do the right thing for his patients. Same Doctor called me at 8 O’clock at night. I was having real difficulty with that fourth transplant, the one for leukemia, I was there for 75 straight days, and he called me one Sunday night and assured me I’d make it through. That meant a lot to me at the time and it still does and that did help me get through with the thing. 

So, our relationship with doctors is really important, and you’re right, not to want to rile your relationship with your doctor, but the words I’m more comfortable with go a long way with me and my doctor. 

Lisa Hatfield:

That’s a great piece of advice going in, especially for those of us who don’t want to question the medical expertise to say something like that, I’m more comfortable with this, and then they can consider it, and I think it’s a team effort, it’s a collaboration when you’re dealing with the lifelong disease like myeloma it has to be a collaborative effort. For the best outcome, so that.   

James Bond:

We look at it like you know the science and the biology, and that’s great, but we know 30 years of history and we know our own risk tolerance, and by putting those two together and collaborating, like you said, was… I think we get the best to answer. 

Lisa Hatfield:

Yeah. Great, thank you. So, Sheri, I know that you have gone through… Well, you had dialysis, there are all kinds of treatments that are involved with myeloma, we have radiation, we have surgery, we have chemo, some people have dialysis, stem cell transplant, so focusing on the chemo aspect, because I believe every myeloma patient will have chemo at some point. Some of the questions that come up with that, or what is that like when you go and did you… When you were first diagnosed, were you able to do some of your own prepping to develop questions, and did somebody prep you? Did they provide any education? What should it even look like when you went into the chemo… What did it feel like when you walked in there? I just figured when I went in, it would be people laying in bed getting sick, they’re all going through chemo, and nobody would have any hair, 80% of the people had hair still, so what was it like for you when you first started chemo? What kind of education did you get and what did it feel like just walking into that chemo suite the first time? 

Sheri Baker:

Well, it’s funny because it was almost 11 years ago, and it’s very different than it is now, there was kind of no real walking you around the chemo Suite and what not in my case, I think it’s because I saw my doctor downtown in Boise, but because I live in Meridian, just outside of Boise, I went to the facility that was there because it’s a little closer to home for most of my treatments, but I liked my doctor who was downtown, so I wanted to go there so anyway, I think because I was back and forth between the two, maybe.

But now I know that they have a program with new patients where they walk them around, they show them the chemo suite, they show where you’re going to get your treatments, and so it’s very different from when I first went in 11 years ago. In fact, when I went in, I really didn’t know what… I knew what the name of the treatment was, but I did not know anything else. I didn’t know how it would be administered, nothing. And they had just started in our hospital here locally, they had just… And I think most of the country had just started switching over from Velcade, which was given in the IV form in the beginning for years to the sub-q injection. So, when I sat down to get my first chemo, because I didn’t know any better, the nurse started an IV in my hand, but then somewhere along the lines in my head, I was like, I thought this was going to be a shot, but I just didn’t know what they were doing… And so, I asked her, I said, aren’t I supposed to get this as a shot in my arm at the time, I thought… 

And she’s like, oh my gosh, I am so sorry. And ended up taking the IV out, and to this day, I still tease her about that. But yeah, I feel like I was a little unprepared, I don’t think the hospital necessarily did a good job of preparing in the beginning, I think they have gotten much better about that, but I do always try to… I try to help the hospital from a patient perspective of, you really need to do this when I was a brand-new patient, this is what I would like to have had. I would like someone to have told me about a support group, I would like them to have told me what my treatment was actually going to be like on that first day, and I think they’re getting better about that, but a lot of that is on us as being your own best advocate, you know, like Jim said, you know they know the myeloma stuff, but you know your body, you know yourself, you know what you’re comfortable with, so you have to ask, at some point in my six… Six years of getting Velcade after I relapsed the first, probably two years, I got the shot in the back of my arm because that’s what everybody did, but then I read about it online and… 

Yeah, you can’t trust everything you read online, you have to be careful. But I read that it was… A lot of people were getting it in their belly, that it was originally intended to go in your belly, and I asked about it and they’re like, Well, yeah, we can do that, and now most people I know at the clinic do get it in their belly, so it’s just a matter of educating yourself and asking questions, and don’t hesitate to ask a question, that’s the only way that you will get answers, it’s the only way you learn, and sometimes it helps educate the doctors and nurses around you as well. 

Lisa Hatfield:

Thanks. So do you think of a patient… A new patient is going into chemo, it’s really uncomfortable. Do you think they would be able to ask, hey, can I have a tour of the chemo suite the week before or a day before my treatment begins. Do you think that would be a reasonable question?  

Sheri Baker:

I think it’s definitely a reasonable question, and obviously cancer centers across the country, I have no idea how they do it, but I know ours here locally is getting better about doing that, it’s a process now, before your first treatment, they’ll walk you around and show you everything so you have an idea of what to expect and you’re comfortable or as comfortable as you can be on your first treatment day. 

Lisa Hatfield:

I have one more or two more questions I’m going to have… I wanted to ask really quickly, both of you can respond to this Jim, we’ll start with you, during all of your treatments, have you had any unusual side effects that nobody was able to explain or that you hadn’t heard of prior to starting that treatment?   

James Bond:

Yeah, probably the emotions got away from me at one point, I lost my temper when I shouldn’t have, and I attribute that to everything about that. I don’t know if it’s just steroids or just the treatments or what… But I like to ask questions, I’m not afraid to ask questions. And I read the signals to my family that I needed to do something differently, and I asked my oncologist who had to become really good friends with here in Cleveland and he recommended a professional and I sought his help, and he sat me down and he gave me some really good advice that I still live by. So, you know, that’s something I didn’t expect and I don’t know if I could have prepared for it, but just being flexible in letting your ego leave at the door step and just realize, hey, you need these people’s help to get yourself going, and just accept, in my case, accept that I’m not as young as I used to be for one, 73 is not 43. And there’s certain things I just can’t do anymore. So, you just got to kind of roll with that, so I hope that’s of some value. 

Lisa Hatfield:

So, Sheri, I know you had an unusual side effect because we talked about it, it was to Revlimid, and I remember getting the same side effect early on in my treatment, I was a really, really itchy scalp in the middle of the night, scratching… And the pharmacist actually talked to, didn’t even know about it, so you and I talked about that, that was one of my unusual side effects that a lot of people didn’t know about. Have you had any other unusual side effects that even your providers were a little bit curious why that was going on, and you think it was from the treatment?   

Sheri Baker:

When I was on Velcade, I kept getting styes on my eye like right in my eye lash line, upper or lower. And we think that now that that… I’ve seen a lot of other people comment on Velcade, they have that as well, but at the time, doctors didn’t really seem to know that that was a side effect of the Velcade. I think that’s why it’s so important when you have a little… I shouldn’t say little, any kind of side effect or something that you have and you should ask and you need to report it to your doctor and kind of report it to the pharmaceutical company because if these things are happening with other patients, but nobody tells the pharmaceutical company then they don’t know that’s a side effect of that particular drug, so that’s probably one of the ones that we weren’t sure that and a lot of cramping, hands, feet, my face, that’s what led me to get blood work in the very beginning when I first got diagnosed was an excessive amount of cramping in my legs and feet, but after I started Revlimid, I had a lot of cramping, cramping, like my face would cramp, cramping in my hands, and we lowered my dosage of Revlimid and that did help, but I don’t know how many people get that to the point where I couldn’t even drive the car, my hands cramped up so bad that I had to pull over until the camping stopped because both hands were cramping, so those are probably the more… 

 I don’t know if they’re unusual, I think a lot of people may get them, but not an easy thing to solve, an itchy scalp…That is crazy. That is crazy. I just saw someone who just quit Revlimid and then got the itchy scalp and she asked, has anybody gotten that when they quit the Revlimid because she goes, now that I’ve been off of it, I have a really itchy scalp, like you say, the cancer itself is different in everybody… And then everybody’s side effects are just slightly different, so… 

Lisa Hatfield:

I think you’re right, that’s why I like talking to other patients because these unusual things the doctor does not know what it is, but you talked to somebody else, like I had that same exact thing happen. You’re right, I reiterate what you say let your provider know when you have side effects and maybe even let the pharmacy or a pharmacist at the cancer center now so they can report that accordingly.  

So that’s my last question is one takeaway that both of you have, whether it has to do with the emotional or mental health challenges of having myeloma or just dealing with even more acute things like, oh my gosh, I’ve got a new treatment, how to deal with that emotionally, one take away that each of you has to help my myeloma patients as they go through the treatments with myeloma. Sheri, do you have one thing that you can leave everyone with or talk about the emotional challenges that you have, how you’ve dealt with them?   

Sheri Baker:

You know, I think that I am different than most people in the beginning, it was a devastating diagnosis. When they tell you three to five years, that’s devastating, because then you start… I was only 49 so you start thinking about all the things that you thought you were going to have in your life, watching your kids get married, having grandchildren, retiring together, living out your… traveling, doing all these things you think you’re going to do, and when you get that first diagnosis it just throws everything in the trash can and so the first six months to a year probably, I focused a lot on that, but then you start to adapt and you’re living with it, and it’s not as bad as what you thought it was going to be in the beginning, and it’s a cancer that we will live with the rest of our lives most likely, hopefully 30 years like Jim. I’ve made it almost 11 years, which didn’t think would happen in the beginning, so now… It’s just part of my life, it’s like, I hate the term, that it’s a chronic illness. I don’t like that it is still cancer, it is not just a chronic illness, but yet that is how we live with it every day, like if you have diabetes, you get up and you take your insulin or whatever, you take every day for diabetes, same thing I get up every day, take a whole host of pills, go once a month for a treatment that keeps me going, it’s just a part of my life now, but being a patient advocate has made it a little different where it is always in the forefront of my mind. 

Everywhere I go, everything I do, I think about it from the support group standpoint or for me as a patient standpoint or whatever, but I think I like Jim, I do that maybe I need to not think about it so that I don’t get burned out. But I’m one of those people that has always had a positive attitude about it, and I feel like for me, it’s been easier to deal with than what a lot of other people go through, which is one of the reasons that I’m glad I started the support group to hopefully help people deal with it a little bit better, but yeah, it definitely changes what you thought he… And Jim was young when he was diagnosed, it changes what you think your life… The rest of your life is going to be like… You know, at least that little map you had in your head of how things would go, but I am just… I don’t know, I just deal with it, I think easier than a lot of other people, it’s never been out of my head to say to have a positive attitude, and I know people get sick of that, you got to have it. 

It’s all about the attitude, but that’s just been easy for me and that’s how I’ve always been… My whole life has been on the upbeat side. So, it’s been lucky for me. 

James Bond:

Thank you for being a support group leader, you help many others, they’re closing thought All The you with us. When we have this incurable deadly disease, keep making your long-term plans don’t feel like cancer will get in your way; you have to change a plan so be it. Keep making your plans. Live your life. You can do it. Hang in there. 

Lisa Hatfield:

Thank you so much to both of you for those positive words of wisdom, keep making your plans. The first thing I did when I found it was telling my husband, we have to update our will, so we move forward with our plans for travel and that type of thing. Great advice, and I really appreciate that. So, thank you to both of you so much for your information and for sharing your experience. We’re going to move on now to the Q and A section, so I’ll remind everybody who is watching this to use the little buttons at the bottom of your screen, the Q and A function, the chat function, and our producer will be forwarding those off to our patient panelists. Thank you.  

Well, welcome everybody to our live Q and A session, as you can see, it’s a different day, that was a pre-recorded session, so I’m going to welcome back Jim and Sheri, and they will be on to answer questions. We have a number of questions on the Q and A, we have a number of questions that were submitted via email and during registration, we’ll get through as many of those as we can, I just want to send a reminder to everybody that we are not…   

Your healthcare providers, we’re just strictly speaking from our own experiences, patients, we encourage you to talk to our healthcare team, and even if you get one little piece of information from this program and you’d like to take that back to your doctor… I’m sure they would be willing to talk with you about that. So please remember that as you’re asking questions to questions a little bit more general, and to understand that we can’t answer medical questions directly, but we will speak with our own experiences to your questions. I’m going to jump right in, and one of the questions that was submitted during registration will start with that, this point will be for sharing, and again, she can’t necessarily speak to the efficacy of treatment, but she can speak to come experience. So, the question is what other effective treatments are there for those in multiple myeloma remission, besides Revlimid. If you could just review again, you were on Revlimid for maintenance therapy. I assume this person is referring to maintenance therapy. What other medications have you been on? And again, she’s not endorsing these medications. She’s just strictly maybe giving you some ideas to talk to your doctor about. So, Sheri? 

Sheri Baker:

Yeah, in the beginning, when I decided to start treatment again, because I didn’t do maintenance right after my stem cell transplant, but when I decided to start treatment or needed to start treatment again, I was on Velcade. My husband always called it being on treatment, not maintenance, because it was three weeks on one week off, and I did that for six years, so that along with dexamethasone for probably two of those six years. That is a treatment option, and it’s typically an upfront treatment option for people, and it can be… I know quite a lot of people who are on Velcade as a maintenance program, there’s obviously Revlimid. And I’m on Darzalex now, which again was given when my cancer markers and numbers, my M spike was increasing and I needed to change treatment, so I was given Darzalex, Revlimid, and Dex, and I’m still on Darzalex now as by itself, if the Revlimid had not lowered my blood count, so drastically and they weren’t bouncing back on my weeks off, I would have still been on Darzalex and Revlimid as maintenance, but now I’m just on Darzalex maintenance. So, those are some options that I’ve had experience with. 

Lisa Hatfield:

And that’s great to hear because I know that kind of the go to for maintenance is Revlimid. That’s what I’ve always been on, so I don’t have experience with anything else, and as long as you were talking, Sheri there was a question that you were going to answer live about what you would do differently if you were diagnosed, could you answer that question for the audience, please?  

Sheri Baker:

Yeah, you know, years ago, before I was on Revlimid, in my head, I said If I had it to do differently, again, I do two things, one, I would have consulted with a specialist right from the very beginning, and through that, I probably would have gone ahead and gone on Revlimid maintenance after my stem cell transplant, even though I was on dialysis, because a couple of years later, speaking to a specialist, she said Revlimid can be dosed accurately to not totally affect your kidneys. So, looking back, I would have seen a specialist and I probably would have done some sort of maintenance therapy right after to give me a longer time before changing treatments. But now that I’ve had 18 months of experience with Revlimid and the way it was for me, by lowering my blood count so badly, I think now that I’m okay that I didn’t do any maintenance for two years, so that’s kind of a tough choice, but I would definitely have seen a specialist right from the get go. 

Okay, that’s good advice. Jim, how about you? Is there any piece of advice, if something you might do differently if you were diagnosed today? 

James Bond:

Very little. We try not to look back, we try to stay in the moment as best we can. I think all cancer patients, including me when into it with the idea that the doctor and nurses, they really had all the answers, we really should follow everything they say, but as I got more and more experience along with my wife… I guess looking back, maybe I could have spoken up earlier. For example, I haven’t done maintenance in 10 years, and that’s not the preference of my doctors, that’s my preference, and I’m willing to go ahead and get my blood checked every six weeks as something to make us kind of reconcile with the two views, but they’re just human beings like the rest of us, and I think just opening up and becoming… Developing a good relationship early is really helpful and it worked out, but maybe focusing on that more at the front would’ve helped.  

Lisa Hatfield:

Well, thank you for that. So, we do have a lot of questions about side effects and how to deal with those. I wanted to make a comment, we did have a question that came in via email, are red blotches on arms and legs and the chronic post side effects of Revlimid 5 milligrams taken while in remission. And just to answer this a little more generally, I think that your doctor may tell you, I told me that any medication can cause almost any effect that it’s hard to know which effects come with which medication. From my own experience, I did develop red blotches on my arms and on my hands, and they actually got swollen, and I did look at their website, it’s Bristol Myers Squib now formerly Celgene that manufactures Revlimid. That is a common side effect, both the rash and also the chronic cough, something you should definitely talk to your doctor about though, it’s always nice to kind of see those images… I actually was going to print a picture of what the rash looks like on my back, I also got it on my back, but I wasn’t sure my producer who’s also my boss would be super thrilled with me putting that you know on a live program.  

I know from my experience; my doctors did say that that rash on my arms and on my back and on my torso was caused by Revlimid. And when it comes to side effects, another comment I’m going to make about clinical trials is when clinical trials are done, they’re looking at the maximum tolerable dose of a medication not the minimum effective dose. So, for anybody who’s experiencing side effects, it might be helpful to ask your doctor if there is a lower dose that you can take of that medication and see how it goes, and we’re not saying that’s the best idea for you, but working as a team with your doctor, he or she may have an idea of how to reduce to that dose to see if the side effects can also be reduced with that. So, I’m going to move on to another question about, have either of you had different experiences with foods or supplements? I see that Sheri said that she does use… I don’t know how to say it, Curcumin. I don’t know if that helps. I don’t know if there’s any… There’s a study being done on that right now at clinicaltrials.gov.  

If you look it up and you can just search for that. Jim or Sheri, have you found any… Have you used any foods or heard from your providers that certain foods may help with not only the cancer, but also with side effects? Jim, do you want to start with that one?  

James Bond:

Sure. One point during one of the drugs I was taking, I also developed cramps, my cramps would be at night in my legs, and I was trying to sleep, and when I brought that up to my nurse and doctor… My nurse said, Jim, this doesn’t work for everybody. It might not work for you, but if you try just having a little bottle of tonic water next to your bed, the quinine that’s in tonic water, if it’s okay with your system, that may help and… It really did help. And so, for a long time while I was taking it, whatever drug it was, I’d take a few steps of tonic water and it made the cramps go away, so that was… That was one. I’m not sure I could think of another one. Why don’t you go ahead, Sheri.    

Sheri Baker: 

Yeah well, pickle juice is another thing, talking about foods or things that may help with the cramping, but I know that there are certain drugs when you’re on them, certain treatments when you’re on them that you maybe should avoid… I think Velcade is one, you shouldn’t be drinking green tea or grapefruit, it supposedly lessens the efficacy of the drug. Asparagus is another one, but those are all things that I would just maybe eat in moderation. Having kidney issues, I’ve always had to watch what I eat in relation to dairy products, and anything that has phosphorus in it, nuts are high in phosphorus and all dairy most dairy is high in phosphorus, so my kidneys don’t process it well because of the reduced function. But as far as the actual myeloma, any foods, obviously a Mediterranean diet, Whole Foods, anything like that’s better for any of us cancer or not, but in particular with the myeloma… No, I don’t know. Anything that’s said, eat this and you’re going to do better or don’t eat this because it will make your cancer worse.  

Lisa Hatfield:

And one thing I would comment on too is if your cancer center has an Integrative Medicine department, that might be a great place to go visit to ask them that question too, and I know they have other therapies like massage and acupuncture. 

We had a nutritionist or dietician for a while, I’m not sure if she is still there, I know they have one in the cancer center itself, so that might be a place to go and look into that too. Moving on to another question that’s a little bit different, is there’s somebody who’s asking online about wanting to know a couple of people have asked about a cure, if there’s an algorithm for a cure. And I probably will ask Sheri that question in a moment because I’m not certain yet. I’ve heard some things from different webinars, but there was another question on that same one,  is it possible to have bone marrow transplant or CAR T, I’m kind of skimming along here for storage stem cells over two years or five years or ten years longer? I think that that person is asking, can those stem cells be used? I’m guessing that… I do know from my specialist, she said that she has used stored them cells thirteen years after they were collected and they were found to be viable and it was a successful stem cell transplant, so that would be something else to ask your doctor is if you have had those stem cells collected stored, how long are they viable for and are they useful if you need a time company that they can best be viability.  

Sheri Baker:

I don’t think those can be used for CAR T though, because those are… Those are different cells. They’re harvesting T-cells versus stem cells.  

Lisa Hatfield:

Yes, you’re right. So, thanks for that clarification, Sheri. Yes, they may be used for stem cell therapy or even for… I think there’s something called stem cell boosting, if somebody needs to have their stem cells boosted or transplanted. Again, something to talk to your doctor about, which should be great. This is a really quick question; I think it’s a solid… I don’t know the answer to that. I don’t know if either of you do, but can a myeloma patient be an organ donor? Do you know that either one of you?   

Sheri Baker:

I don’t think so, especially because myeloma being a blood cancer and it’s systemic running through our body, I think even if you were at MRD negative, I would not think… And I don’t know 100%, but I would think you’re not eligible. 

James Bond:

I don’t even like the mosquitoes to bite me. 

Lisa Hatfield:

Jim, when I was on Revlimid, I had three years, no mosquito bites, I think they knew not to bite me, so I’ve been off of it now for a couple of months and I have gotten eaten alive by mosquitoes just saying, maybe they know something too.  

James Bond:

Maybe, they do.   

Lisa Hatfield:

Go ahead, Jim.  

James Bond:

Well, in terms of supplements, checking with your medical team is vital, no matter what it is, wherever I mentioned about tonic water, check with your doctor first because I was amazed when I had a cold years ago, and I probably reported to my doctor is through cold medication I was taking… And he said, Jim, don’t do that without asking me that contains zinc, and zinc is bad for your kidneys, and my kidneys are okay, but they’re not great, and so that was a good lesson in things. Even if it sounds faint, it could not be hurtful. It’s wise for us blood cancer patients to check with our medical team first. 

Lisa Hatfield:

Sure, yeah, good idea, Jim, thanks for that. Sheri, there are a couple of questions that have come in via email during registration, and now I see one that’s on the chat. If people don’t have a local support group or group to go to, what are some options for them to find a virtual group or to find a group to attend?  

Sheri Baker:

Yeah, so I’m involved with the International Myeloma Foundation and our support group who prior to covid was meeting in person, but we’re now meeting virtually, sometimes maybe a hybrid where some of us are in person and some are virtual. So, if you go to myeloma.org, you can look up support groups, and you can find support groups that are meeting virtually. I mean it’ll take you to their different websites, which will tell you whether they’re meeting virtually or in person still, and so you can join those from anywhere, you just send an email to that support group leader and tell them you’d like to join their next meeting, and they can send you the link. Also, Health Tree Foundation has all virtual support groups, and they are done geographically, they’re also done whether you’re smoldering myeloma or MGUS, different people who are on different types of treatments, so they have virtual support groups based on the Mountain West, Southern California, several in Florida. 

People who have patients with young children, they both, International Myeloma Foundation and Health Tree have Spanish-speaking support groups, so there’s a lot of options out there for virtual support groups and you can join from anywhere in the country.  

Lisa Hatfield:

Thank you. Okay, that’s great advice on that, trying to skim through some of these questions also, so there were a couple of questions also, that came up regarding using novel therapies and not going down the stem cell transplant. So autologous stem cell transplant, Jim has had an allergenic transplant, which is not very common anymore, the stem cell transplants have been the standard of care, I also opted to delay mine. There was just at the most recent ASCO, Dr. Paul Richardson, who Jim knows from Dana Farber, completed the determination trial, which had two arms to it, and I’ll just go briefly through this because we’ve had several questions with two arms, one was BRD plus stem cell transplants plus Revlimid maintenance until progression. The other arm was VRD, I can’t remember now if there’s consolidation therapy, I don’t know if you know that Sheri, but no stem cell transplant, Revlimid maintenance until progression. Basically, the findings on that were really interesting, they found that progression-free survival increased for those patients was great for those patients who did have the stem cell transplant, however, that did not translate to overall survival benefits. 

The one caveat to that was for patients who reached MRD negativity after induction, they saw the same progression-free survival, it was similar for both the transplant and the non-transplant arm. It’s a really interesting study. Dr. Richardson explains it really well, I just listened to Sheri had mentioned Health Tree, so if you go to Health Tree’s website and look up, I think it’s called myeloma radio or something. Jenny Ahlstrom from Health Tree did an interview with Dr. Richardson about this determination trial, really interesting. For those of you interested in hearing more about stem cell transplant versus no, stem cell transplant., that would be something I would recommend. We’ve several questions about that. Okay, so we’ve got just a few more minutes left. We’re going to save these questions and we can reach out to you via email if you provided an email address, I do want to look up the organ donor question and might try to post that somewhere because I’m curious about that myself. We’ve got a few, too many questions to answer.  

Sheri Baker:

Lisa, can I say something real fast? There was at least one question about African-Americans. I would like to say that both International Myeloma Foundation, which is at myeloma.org they have a program called M-Power, they’ve done presentations, you can find those on myeloma.org about myeloma related to the African-American community, and also health tree also has another…  

They also have an initiative, again, specifically for black Americans, well, just African-Americans in general, no matter where we live in the world related to myeloma, and so my advice would be, go look at those and definitely, just like you do, Lisa and Jim and I both do you have to be an advocate for yourself. You have to be your own best advocate when it comes to your cancer, no matter what your ethnicity or nationality is, and so the best thing you can do is speak out, but in particular for that subset of myeloma patients, go look at those websites for more information.  

Lisa Hatfield:

Great, thanks Sheri. Jim, there were a couple of questions that came up for you, and I will mention that your book is called The Man in the Arena. it Could be ordered via Amazon. There’s a link that I think was put in the chat or in the Q and A, but one of the questions, I think it’s relevant because this does come up with some patients been treated for myeloma, the question is if you get… What types of leukemia did you get? What was your second cancer that you developed? Somebody’s asking if that was MDS? 

James Bond:

Well, it started out as MDS, and the progression from MDS to the type of leukemia, it was AML leukemia. The progression from MDS to AML is detailed in the book, I would like to make sure you understand the profits from the book go to cancer charities, so the book was only written to try to give some people some out there. 

Lisa Hatfield:

Yeah, alright, thank you, Jim. And I know there is some concern when people go on these therapies something, they need to talk to their doctor or they’re specialists about what are the short-term side effects of every medication, and also ask what are the potential long-term side effects? That’s something that I’ve always been cognizant of. and a little bit worried about, so something to not only ask the question about, but to keep an eye on too. So I just want to comment too, I’ve had a couple of people ask about chemo brain, the brain fog, the kind of fatigue and one person mentioned clumsy feelings, so when it comes to chemo brain, I have found… We can mention that to our providers and the nurses, and that it’s just something you’re going to have… But that’s hard to hear that what I have found is that when I talk to other patients, when I go to the support groups, when I have met patients like we’re doing here, and hear their stories, it almost makes me feel like I’m not alone, so when people are going through that. And there’s one person here who I saw comment on other myeloma patients who seem to know exactly what I’m describing. 

That is one of the benefits of connecting through these webinars and through some of the support groups, is we kind of understand each other, it helps us understand or support each other because we understand each other.  

James Bond:

One of my doctors gave me great advice in that regard, he said to me, Jim, you have to remember you’re older now than you used to be. So, guys, it’s not all cancer.  

Lisa Hatfield:

That’s true, that is true. So I’m going to put my email address here; this is super unprofessional and my engineer husband would be dismayed because I’m not very text-savvy. This is my email address, cure4mm@gmail.com It’s probably backwards too… Sorry about that. I put that out there, just so that if you do have questions, you could email me. I may not have the answer an oftentimes don’t have the answer, but I usually call Sheri if I don’t because she can find the resources.  Please feel free to email me directly if we have your email address. Like I said, we will get back to you on your email if you have questions, I think we’re going to have to close up this Q and A, I have so many more questions I’d like to answer. It sounds like a lot of people have the cramps, different side effects, how they deal with that, is that common? We’re going to close this up for now, we are hoping to have another one of these programs in about two months. Jim and Sheri, thank you so much for sharing your stories and your experience. 

For all of you at home, thank you for joining us, I love hearing stories of other people, that’s why I do this, I love to hear their experience, I hope that even if they’re just like I said before, one little piece of information that somebody can take from this, and ask their doctor about which we want you to do… Please do so we all have a hope for a cure. I wanted to talk about an algorithm for a cure Sheri I said that… I don’t know if there actually is. Everybody is different. There’s nothing definitive that I’ve heard Doctors say, well, if you’re 10 years out without treatments one, Doctor said Well I would call that a cure, so it just depends on who you’re talking to. I have high hopes for a cure and I hope it’s soon for all of us patients dealing with this, so thank you again. Thank you for joining us from home. We really appreciate you taking time out of your day. Have a great afternoon.  

Path to Empowerment: Multiple Myeloma | Testing

Path to Empowerment: Multiple Myeloma | Testing from Patient Empowerment Network on Vimeo.

Living with a multiple myeloma diagnosis exposes you to many tests such bone marrow biopsies and often creates feelings of anxiety.  Hear from a panel of myeloma patient advocates who share their personal experiences, advice, and various resources in addition to myeloma expert, Dr. Douglas Sborov who was able to answer several questions during our Q&A segment.

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Path to Empowerment: Multiple Myeloma | Newly Diagnosed

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A new multiple myeloma diagnosis can bring up many unexpected feelings. Hear from a panel of myeloma patient advocates who share their personal experiences, advice and various resources.

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How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma? from Patient Empowerment Network on Vimeo

What can patients and healthcare providers do to improve health disparities for myeloma patients? Expert Dr. Joseph Mikhael explains the communities that need more outreach about myeloma and those he views as vital to educating about myeloma risk and symptoms for earlier diagnosis and better health outcomes.

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Transcript:

Dr. Joseph Mikhael:

Well, I have to tell you, this is a very personal issue for me, disparities in multiple myeloma, and I have the privilege of being involved in many programs and platforms to try and address this. And like with any major consideration, there isn’t a simple solution, it is going to take a multi-fold solution that has many parts. The first part that I think is critical is engagement of our communities, whether it is the Black community, the Hispanic community, even though in more rural areas or patients uninsured, we really require a kind of an engagement that’s real to build trust, to build confidence, this is stemmed from years of mistrust and understandably, so that we have to re-build.

I try to do that personally in my practice, but advocate for it on a larger sphere. Secondly, I want to empower my patients to learn and for communities to learn, whether someone has myeloma might have my load or as already myeloma, and I don’t have it might have it, or do you have it? Those patients need to be educated about myeloma so that they can understand who’s at risk and facilitate a more early and a more accurate diagnosis. Thirdly, I believe very much so, in educating the primary care world, the majority of patients with myeloma are still diagnosed by a primary care physician. They may ultimately see a hematologist-oncologist to confirm that, but the suspicion comes at the primary care level. And so I’m involved in multiple programs to educate primary care docs to think about myeloma, as I like to say, “If you don’t take a temperature, a patient won’t have a fever, you need to look for it.” And so if there are certain signs or symptoms that may include bone pain, significant fatigue, signs that we see like protein in the urine or a low hemoglobin or kidney dysfunction, these things need to push us to look for multiple myeloma. And then lastly, to look at disparity as an important area of work across the whole board that we need to better access to have better access for clinical trials and for the therapies that we know will benefit our patients, and that’s on us as physicians. But it’s also on the community at large, our regulators, our insurance companies.

Those are the kinds of things that I’m working on so that we can make a long-standing difference and really start to reduce this currently awful disparity in multiple myeloma.

 

How Can Myeloma Patients Take Disease Ownership and Connect With Resources?

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Transcript:

Dr. Joseph Mikhael:

I have long believed in patient advocacy, that we need to make systemic changes, we need to make changes within the healthcare system. But our patients are partners alongside of that, and there are many ways in which patients can be empowered to ensure that they have access to the best treatment possible, and this really begins with their own belief and understanding that they are part of that solution. This is…as one of my patients always used to tell me, I am taking ownership of this disease, I don’t want to own it, but I’m taking ownership of this disease. And that initial thought process, I think is important, secondly, to educate oneself about it, there is so much to learn, and there are a lot of difficult ways that it can be difficult to navigate resources. But there are great resources available because patients who are informed and understand their condition more can definitely facilitate the process to their best care. Thirdly, we’ve come to appreciate that having access to a specialist is very important, multiple myeloma may account for only 1 to 2 percent of all malignancies, and so very often, it may be difficult for a community oncologist to keep up with all of the details, and so…

Now, perhaps more than ever through the pandemic with access to telemedicine, patients can seek out an expert opinion. I prefer to call it an expert opinion over a second opinion because it doesn’t mean the first opinion is wrong, it just allows further education, further understanding to enhance one’s care. And then, of course, lastly, to be involved in community and other efforts that really push us towards better access for treatments for patients and better education are reducing the stage of this disease, so we can all provide the best care possible for our patients.