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The Myeloma Empowered Thriver and Expert Chat

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Published on October 24, 2019

Multiple myeloma patient and advocate John Rosengard sits down with his own doctor, Dr. Nina Shah, a leading expert from the University of California San Francisco (UCSF) Health, to discuss tips, tools and resources for becoming an empowered patient. John shares his journey with myeloma, while Dr. Shah offers an expert perspective on understanding your condition, developing a partnership with your provider and navigating clinical trials to help others become a cancer thriver. Watch now to hear their expert advice for living with myeloma.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Celgene Corporation, Janssen Pharmaceuticals and Takeda Oncology for their support. These organizations have no editorial control, and Patient Power is solely responsible for program content.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

John Rosengard:        

Hi, and welcome to the Patient Empowerment Network Program. My name’s John Rosengard, and I’m a myeloma patient survivor. I just wanted to tell you a little bit about our program today. I’m joined by my hematologist and oncologist, Dr. Nina Shah, from the University of California San Francisco. Dr. Shah, could you give us a little bit of your background, please?

Dr. Shah:        

Hi. My name’s Nina. I’m really thrilled to be here at this event. I have been at the University of California San Francisco since 2017. And before that, I was at MD Anderson Cancer Center. My clinical focus is in multiple myeloma, and my research focus is in immunotherapy and cellular therapy for multiple myeloma. I look after hundreds of patients with multiple myeloma, and our clinic here at UCSF as 1,500 active myeloma patients, and I really love participating in a mixture of clinical trials, which includes antibody therapy, novel drug combinations, novel agents, phase one trials, and chimeric antigen receptor T cells or CAR-T cells.

John Rosengard:        

That’s great. Thank you. I’ll give a brief rundown of my myeloma journey for other patients who may be tuning into this. I learned that I had multiple myeloma from the back-pain route, I guess I’d call it. I was diagnosed at UCSF in November of 2017 and started my treatment with Dr. Shah a few weeks later. The treatment involved me joining a four-medication clinical trial and then having an autologous stem cell transplant a few months later in May of 2018.

After that, moved into the consolidation and maintenance phases of treatment. Consolidation brought back my quality of life pretty quickly, but, in maintenance, which will stretch out for another year to come, really just means testing and monthly infusions for me. Dr. Shah, do you have anything else to add about the clinical trials that I’m involved in or how patients might navigate the clinical trial process?

Dr. Shah:        

Yeah. So, it was a great partnership that you and I had for the clinical trial, and one of the things that this particular trial was looking at is understanding how many drugs are good for a myeloma patient upfront. As you know, we—the standard now, give three drugs upfront, but this explored possibly using an additional drug. And in your case, this drug was daratumumab, which is an immunotherapy. It’s interesting that we’re having this interview today because this drug, daratumumab (Darzalex), was just FDA approved to be given, upfront, exactly in your setting, with a transplant.

And so, even though your study is still maturing, the study before yours is confirming sort of what we thought might be true. So, it’s hard to say every detail that goes along with getting into a clinical trial, but I think one of the things that’s really important is a really nice conversation and partnership between the patient and the provider because it’s our responsibility, as providers, to explain the disease, why it happens, what are the clinical manifestations, what pain you may be having, what other things might be abnormal in your labs and, for you, as a patient, to feel like your symptoms are being addressed, but then, also, what there is as a clear plan for your treatment.

And in this way, the discussion about clinical trials really naturally enters because, if there is a clinical trial available, even in the upfront setting, like as what’s happened to you, it’s worth it to consider because that gives an additional opportunity for the patient and the physician to talk more about the disease and also talk about, what are the ongoing questions that we have in our study of multiple Myeloma? So, in this way, I think the conversation between the patient and the physician can help not only to understand the disease better, but also understand clinical trial options together. 

John Rosengard:        

Yeah, absolutely. The treatment selection process I found to be enormously important because, again, it’s the first part of fighting multiple myeloma directly. To piggyback off what you just said, some people might think that having a clinical trial as their front line or first treatment is a little unusual, but I didn’t think so. My initial reaction and research was that the T-cell therapies or the CAR T treatment option, which was still incredibly new and innovative in 2017, was really for serious relapse and refractory cases. And those patients were getting access to CAR T cells first, and that counted me out as a frontline or a first-time newly diagnosed patient.

But also, some evidence was really coming out. The three-drug therapies were adding years of high-quality life as opposed to the two-drug therapies that were used not that long ago. The research, however, was a little contradictory because none of the information that I found in that first faithful Google search was dated. So, I would find information from 10 years ago that was incredibly pessimistic about the options and the number of years of high-quality life, as well as the, I’d say, turnover in treatment options and the aggressive number of clinical trials that were being offered within the myeloma patient community.  

That didn’t come out until, I guess, my second or third faithful Google search, but it was really helpful as a layperson because my initial reaction was additional medications. And I brought along a show and tell for us. Here’s the additional medications. 

Dr. Shah:        

Oh, good.

John Rosengard:        

And here’s the backup if those don’t work. I don’t take those now, but it’s not inconsequential to say, “It’s really important to understand the multiplying effect.” I’ll call it that as a layperson. The multiplying effect and the quick or measurable response. So, for newly diagnosed patients and their caregivers who might notice that treatment selection is a vital first step of the process, Dr. Shah, that requires learning a new vocabulary and acting when clearer data is ready and available. What general processes do you try to bring to a new patient when they’re just getting started on this journey?

Dr. Shah:        

Yeah, I think you make a really good point that the availability of information can be a blessing and a curse. So, a lot of my patients—actually, even in the past 10 years, I’ve noticed a difference, that people coming in and they know more about the disease because of things like Google and other information portals that we have, which I think is great, but also absolutely needs to be digested with a little bit of context from each patient’s particular case. 

So, I think one of the main things that we, as providers, can do is educate the patient on how this disease comes about, and that’s one of the first things I do when I meet a patient. Saying, “Okay, do you know what you have? Has someone told you?” Because even if not everybody has a medical or science background, it’s pretty simple to explain that myeloma itself is a cancer of one of the immune cells and what the things happen—what they’ve happened because of that particular cell growing. And if patients can understand that, then they can look at their labs and interpret their data because, remember, now, we all have access to our labs, which a lot of my patients didn’t have 10 years ago, and we look.

We look at our little portals, and we try to see what the lab values are, what the anemia is, etc. And one thing that’s really critical to interpreting myeloma labs, for many patients, not all, is understanding the myeloma profile, which includes the SPEP, or serum protein electrophoresis, and then the light chain, the free kappa, free lambda, and sometimes the urine protein electrophoresis. And learning how to read those three things can actually help a patient feel very empowered because they don’t have to wait for every visit to talk to the doctor about their results. And the honest truth is, sometimes, every doctor doesn’t have time to e-mail every patient after every result. So, it’s a good way to get educated upfront, empower the patient, and say, “Okay, I now know how to interpret my labs, and I will work with you. You and I are gonna work together. If we see something abnormal together, we’ll chase it.”

And similarly, the bone marrow results—because those are also—I mean, even doctors have a hard time interpreting those. It’s important to go over the actual words that mean something to both the doctor and the patient at the initial diagnosis. And I think that’s another way that people can be empowered as they start their journey.

John Rosengard:        

Would you say that it’s easy or difficult for a patient or a caregiver to get bogged down in detail as they’re picking up the vocabulary, picking up the processes available to them?

Dr. Shah:        

Yeah, I think that’s definitely patient dependent and caregiver dependent. What I’ve noticed—and I know I have a skewed perspective because I practice at an academic center, but what I’ve noticed is that a lot of people want to know. They want to know the details, and, at first, it’s a lot of information to digest because, the day that they’re seeing you for the first time, we’re talking about disease and prognosis and risk. And maybe, the second time, we’re talking about treatment and eventual transplant. But each time, I do show or I talk about their “markers”, and we talk about the labs. Each time that we have a visit, it’s a chance for patients to get more details and to digest those details more.

So, if-if they’re detail-oriented, that actually ends up being a good thing, uh, because then, as time goes on, they feel like, “Okay, I have an idea of what’s going on. I know what to look for.” But that doesn’t mean you have to be. Some patients would rather just have their provider tell them what they need to know, and they don’t wanna be a slave to the lab, and that’s fine, too. Either way is fine as long as both the patient and the provider know how to navigate each system. 

I think that one of the things that you kind of already brought up is what tools that you guys, as patients, have, particularly within electronic medical records, and this is actually something relatively new for all of us. Like I said, 10 years ago, we didn’t use it as much. But now, you have things like the MyChart app, and then you have social media. We have patient advocacy groups. If you had to look at all that, what would you say is the most useful for you?

John Rosengard:        

I’d say, a little selfishly, it was following your suggestion to follow you on Twitter, to keep up with the research because you’re a great filter for all of the content that’s out there. I know a few of the doctors that are very active in the multiple myeloma community are thoroughly well published. They’re speaking on a regular basis. And your Twitter feed, by the way, ninashah33—just ninashah33 all one term.

You filter that out for me, so I have a running chance at actually finishing it in an hour when I pull it up because the content that you bring together is some highlights about what medications are working, what therapies are coming out that are that are combinations of medications—stem cell transplant, CAR-T cell therapy, and so on. 

And in getting up the learning curve, which I think every patient and caregiver has got a duty to do, is a lot easier if there’s someone saying that there’s some raw research in the UK. There’s some raw research in these medical centers here in the U.S. Follow them. Follow these doctors. You’ll get a good read on what’s the curve. I think that that was a lifesaver because I could’ve really spent 10 hours a week just getting background and just getting comfortable with the content. And at some points, it was a little unnerving to find out that there’s a 50/50 chance of the life expectancy being measured in a very short time span versus having the forecast that you could really be returning to your life.

But I travel quite a bit for my work. You travel quite a bit for your work. To be able to get back to that pretty quickly was evident a month after my stem cell transplant, which I remember ticked you off a little bit that I should be just saying that I can’t just stroll in the San Francisco Airport and go wherever I wanted to. I had to give a little bit of thought about my compromised immune system, which I well and truly did. But again, going off of the filtered information as opposed to the raw information was a big plus for me.

Dr. Shah:        

Yeah, I mean, that was one of the things, I think, for you and I, as a doctor/patient relationship, that I saw you were really focusing on things—that you wouldn’t ask, necessarily, “Okay, when’s this gonna be cured? When’s this gonna be cured?” But rather, “Okay, I know that there can be times between my state right now and eventual potential progression or not, and how do you tell a patient—if you see a patient who’s newly diagnosed, how do you tell them to focus on those types of things so that they can bite off small pieces and go day to day, get back to their life, and not focus on just one thing about, “Oh, is this gonna be cured ever?” What advice do you think you can help people with that?

John Rosengard:        

Well, my first thing is—and this is me being me, but I built a spreadsheet. I built a giant spreadsheet of my lab data, going back to, really, the 1990s. Nothing to do with UCSF’s treatment, but just I wanted to put it all in one place so I had just a reference point to start with.

And it gave me a silly sense of control, I guess, to say, “I can now detect if there’s a very, very slight change in the IgG kappa reading from month to month to month. I can be on top of it just like you are.” That doesn’t give me an MD or a license to practice medicine, but it gives me the ability to at least say, “Is this anything to be concerned about, or is this still in the error bar of I’m still okay? And we haven’t gone up here. We haven’t gone down here. We’re still sort of moving along over time.”

And that comfort level of just building some sensitivity to what data mattered and what data could still move around and be perfectly normal, that sensitivity that’s—Microsoft Excel doesn’t give you that. The raw lab data doesn’t give you that. That’s where your position and honest conversation can take you to a good understanding of how those different variables interplay with one another and how a sudden spike in one can be indicative of nothing more than having a cold or picking up the flu, unfortunately, during that time of the year, cold and flu season.

Dr. Shah:        

Yeah. Yeah, I think that, patients like you, who are either, maybe, just starting therapy or maybe just starting to get engaged with their process, trying to have more control, power, and, also, education about what they’re doing, it’s really important to ask questions to their provider. And what you said is right. You’re looking at the labs on the spreadsheet. I’m looking at it at the electronic medical record. We’re both human, so I may miss something. And I try not to, but—and you may catch something.

Even though we have our “roles” as provider and patient, we are on this together. So, I think it’s really important for patients to ask things of their doctor. They should never feel shy. I know it’s sort of hard because you’re talking to a stranger and, yet, someone you have a relationship with. So, it’s kinda interesting. You may not want to question that person, but you should with all our capable thinking and processing information different ways. And it’s really nice—I actually like it when the patients ask me, “Well, what do you think about that?” And I may have not thought about it in the way that they’re thinking about it because they may tie it into a symptom that they’re having, or, like you said, you may have a virus or something and say, “I have this virus,” and maybe I was worried about this IgG, but it turns out that you had a recent virus. So, they’re all ways that we can put information together and, more information, the better.

So, one thing I would just say to patients and what I feel like you benefit from is, ask questions. Ask questions about lab interpretations, about what next steps are, just questions about what’s been going on lately. And I think that will give education and, I think, ultimately, will give the patient more power.

John Rosengard:            

Mm-hmm. And just to go a little further into that point, every month, I come in for my lab work as part of the participation in the clinical trial. Other patients may be coming in on a less frequent basis, perhaps every 90 or 180 days or once a year if they’ve got a, for example, smoldering myeloma or other conditions. My point in bringing this up is that one of those may be—and if we all live long enough, one of those probably will be—one to say, “It’s not getting better, and this condition is getting a little worse.” That’s another step I’m ready for, to just say, “What are our options at that point? What treatment options do we have available?”

Because it’s not a one and done. It’s not like having a broken bone where you can just say, “Set it, get it in a cast, take good care of it, and keep the weight off of it. And then, six to eight weeks later, something new will be ready to happen.” This is an ongoing battle with them and being a part of a clinical trial that does help the 30,000 newly diagnosed multiple myeloma patients here in the U.S. be a little closer to some effective treatments is, I think, all part of the healthy part of the equation. Any further thoughts on first steps for those newly diagnosed patients? 

Dr. Shah:        

Yeah. I think, as you already mentioned, things like the Patient Power website, Myeloma Crowd, healthtree.org, Myeloma Beacon, MMRF—all of these are really important places where patients can get good quality information. I like hearing that my patients have gotten information from other people. It’s okay to get a second opinion. It’s totally fine. You should feel in control of your health and your decision-making.

John Rosengard:        

Absolutely. Just a little bit about Dr. Shah, from my perspective, she’s my go-to person for multiple myeloma at UCSF, but UCSF is like any big institution. If you like processes, multiple myeloma is your condition. If you want to talk about faster infusions, because they might be taking too long, there’s a team, but she’s not the right person to talk to directly. If you wanna understand lab results, she’s the right person. But if you have trouble logging in or with the helpline being available for you, there’s a team for that. If you have questions about billing and insurance, there’s another team for that. Team management support groups, another team.

UCSF has got depth and strength, and other regional medical centers that have, I guess, the specialists, rather—a large specialist team in multiple myeloma—will, inevitably, have that layering of people. And I found that my treatment team grew from my one best friend or two best friends, my general practitioner here in the Bay Area, California—it grew to 10 people to include Dr. Shah, and then it grew to 25 people. Before I knew it, I had 25 best friends who wanted to know how I was doing and how my symptoms were relative to subsequent treatment stages.

And it took time for me to get to know them and for them to get to know me, but that investment of time and effort to, again, be part of the team and be part of the equation and processes was an important part of just getting through the clinical trial efficiently and effectively and then just being ready for the next steps of, again, prospectively, full remission, relapse, refractory, and just a whole variety of outcomes that have yet to play out over the years and decades to come.

So, with that in mind, I just wanted to move on to a couple of questions that have come up from different participants at the Patient Power website. The copays for multiple myeloma drugs can be very expensive. Any advice on how to deal with that, or are there programs that can help?

Dr. Shah:        

Yeah, this is a really important question. I’ve frequently noticed this, especially in my Medicare population, particularly with oral chemotherapy, for example, lenalidomide. There are patient assistance programs, which are company-specific, and you can ask the company directly. They usually have a hotline, or you can ask, at your particular oncologist office, if they have a connection with a local area rep who can put you in contact with that helpline. This is a frustrating part, and what I’ve been trying to do is, when I meet with a lot of these representatives, I try to take your complaint about this to them directly and say, “Look, my patients are not gonna get your drugs if it’s not affordable.” And ultimately, that means that that drug company needs to work with all the insurance companies, including Medicare drug coverage, to supply this for patients. So, that’s what I can do on my end. And then, from your end, really working with the patient assistance programs. They do exist, but they’re a pain. They’re one more thing you have to do, which it’s hard for us to tell you, but we also want you to get the drug. 

John Rosengard:        

Second question comes from Jefferey. It’s been two years since I was diagnosed with smoldering myeloma. My oncologist said that my numbers are not at a point for treatment today, but he has me doing bloodwork and bone x-rays every three months. This is causing me a lot of stress and mental anxiety. Is this a normal situation to be diagnosed and not doing anything about it? Any advice on how to cope with the stress and anxiety of waiting to be treated? What do you think, Dr. Shah?

Dr. Shah:        

Yeah, this is a really important question because there are a lot of patients out there who are diagnosed with smoldering multiple myeloma, or what we call asymptomatic myeloma, meaning that you have some plasma cells in your bone marrow, and you also have some evidence of M-protein or light chain, but you don’t have enough to require treatment, and the first thing I can say is there’s reason for that; because, as of now, we don’t have any data to show that treating you early before you develop symptoms is going to prolong your life.

That being said, there are some clinical trials that look at patients, what we call high-risk smoldering myeloma, to be enrolled in clinical trials of treatment versus not. I have mixed feelings on this because I’m one of those people that likes to preserve quality of life as much as possible, and most of my smoldering myeloma patients are full-time at work, not doing anything else. And so, what I always tell these patients—and I don’t wanna put this on every other physician out there, but I always say, “Let me do the worrying. You come in for your labs. You come in for your assessment.”

I usually do a bone marrow and either PET or MRI every year, because that can change decisions. But I always tell my patients, get the labs, walk out of the lab building—out of your Quest or whatever it is—and let me do the worrying because there is nothing you can change, and I want it to be something that’s just a part of monitoring but not anxiety. In response to the question, it is totally normal to get that frequency of checking, and that’s really on us, as a partnership, to make sure that you feel comfortable with that frequency, but also that your provider is checking up on the labs when they come to the boss.

John Rosengard:        

What do you think are some of the mistakes that a newly diagnosed patient can make about their treatment or about their recovery?

Dr. Shah:        

Well, that’s a hard question because I think the patient, really, can never make a mistake because, ultimately, it’s about what the patient wants. But I will say that, a lot of times, patients think that they cannot get treatment for symptomatic myeloma. For example, they have a new plasmacytoma on their shoulder or have broken a bone or a new anemia. And they’ll say, “Well, I just wanna use natural means to get rid of this.”

And I don’t have any problems with natural medicine or anything like that, but my education and experience has taught me that it’s not gonna be enough to stave off this really aggressive malignancy, and the last thing I want someone to do is to break a bone in their spine and then become paralyzed. So, I always say, “I’m happy to work with you and whoever your naturopath is or whoever your other physician is, but I truly feel that you need treatment, and then I want that to get through to you.” And that’s just my experience. But again, I always do try to respect what the patient’s wishes are.

John Rosengard:        

Another participant on the Patient Power website asks, “Is there a resource for local oncologists to reach out for information and collaboration about multiple myeloma?”

Dr. Shah:        

Yeah. Now, depending on where you are, you’re probably in touch with the local, maybe, academic hospital, and it’s hard to know—just depends on where you are in the U.S. But I really do like going to the Multiple Myeloma Research Foundation website because they have information there, and you can actually contact them, and they would be able to put you in touch with someone who might be a myeloma expert. I mean, you already said it. You can even look on Twitter and follow myeloma feeds and actually do a direct message to any one of us. Usually, one of us gets the message, and we’ll respond back.

Most everyone has a way to contact through the American Society of Hematology. That’s another way that physicians who are hematologists contact each other. If you really want to get your doctor to somebody who’s a myeloma expert, it should not take more than three tries of contacting this person or that person to be able to get through. My email is public, and other people’s are as well, and I usually respond. So, it’s more a question of making that initial effort. Okay, I’m gonna go through a web search and find this person’s email and send them a message. But we are always willing and happy to answer these questions because, a lot of times, these patients may wanna come for a second opinion or consider a clinical trial or just need some advice, and that’s totally fine.

John Rosengard:        

Just to add to that, Dr. Shah, one of the things that I’ve noted from MMRF and other organizations is, periodically, there are patient summits that are offered all over the country, and they’re generally—in my experience so far, is that there are at least 500 to 3,000-person beds. They’re quite large, and it may be, I guess, comforting, to a degree, to meet and be met by others that have the same concerns about multiple myeloma as a patient or a caregiver and see that there is some strength in numbers. Do you have any closing thoughts on our talk today?

Dr. Shah:        

Yeah. I really like the point you said about meeting other people with this disease and other caregivers. We’re fortunate enough, in the Bay Area, to have a patient-centered support group, and I really like doing programs with them.

And what I’ve noticed about all the patients who attend something like that, even if it’s a cancer, in general, support group, is that they can share stories and sort of talk. I mean, it’s important. It’s a really huge thing you’re going through, and you need to talk to other people about it and people who understand. So, it’s great to get a support group even if it’s just cancer, even better if you have a myeloma support group. And online, there are support groups as well. So, whatever you can do to make yourself feel not alone will also add to your empowerment.

John Rosengard:        

Well, thank you, Dr. Shah. It’s been great catching up with you today. Thank you for participating in this event, and that is it for us. Thanks for joining us.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.