Key Considerations When Choosing Myeloma Treatment: What’s Available?

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Key Considerations When Choosing Myeloma Treatment: What’s Available? from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma at the Cleveland Clinic, shares tips for making treatment decisions and discusses the evolution of myeloma therapy in recent years. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

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Transcript:

Beth Faiman:

There are so many treatment options, and that’s one of the reasons why it’s so important for patients to at least seek an opinion once or twice with a myeloma specialist because treatment changes so rapidly. We have over 20 medications that are approved for the management of myeloma and so the patients need to figure out what’s important for them.

Oftentimes you think, father knows best or doctor knows best. And I hear from time to time that you’re the doctor, you should know what is best for me. But I say, “I understand what might be the best treatment for you in terms of response rate, but we have to balance quality and quantity of life. What are the things that you’re willing and your family’s willing to accept for treatment?”

Do you want to undergo a stem cell transplant which maybe takes you out of commission for a couple of months? Or take an oral therapy every day or an IV therapy intermittently? So, there are oftentimes more than one decision, and this is what we like to practice at my institution. It’s called shared decision making where you have a partnership between the patient and their caregiver, and the healthcare team and we work together to mutually decide what’s best for that patient.

So, sometimes just really trying to get that cure or eliminate the myeloma cell clone as best as possible might not be the right answer now, especially if you’re a single mom or a single dad or caring for a loved one. But maybe that might be a future goal. So, having that conversation is so important. And patients should feel empowered to be able to have that conversation with their healthcare team because if they don’t, then maybe they need to see a different doctor or specialist so they can feel comfortable with them.

I am so excited about all the new classes of drugs that are so — that are currently available. When I started managing myeloma in 1994 or 1995 there was only stem cell transplant and maybe melphalan or Cytoxan, and those drugs were not very effective in controlling the disease. I’m now able to mix and match treatments and give patients different opportunities to meet these milestones. You know, patients were so worried about not being here in two or three years, and now it’s 20 years later. So, forming those relationships and keeping them living healthy longer is so important.

We now have drugs available that can have the possibility of achieving what’s called minimal residual disease or MRD, where we’re eliminating in the bone marrow, the myeloma clone

That was unheard of five years ago even. So now we have the BiTE therapies and CAR T-Cell therapies, and some of the newer drug classes that will hopefully have a functional cure.

People ask me what a cure in myeloma is, and hopefully, we’ll have a real cure. But, living out your normal life span compared to people that don’t have myeloma, and really enjoying life as you do it. So, I always tell patients don’t forget about health maintenance and checking cholesterols, looking for secondary cancers, keep a primary care provider on hand because as a team, we can all work together, to have you live your best life as possible.

Diagnosed with Myeloma? Why to See a Specialist and What to Expect

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Diagnosed with Myeloma? Why to See a Specialist and What to Expect from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, provides insight into her relationships with patients and the importance of seeking a second opinion with a specialist, even for just a single consultation.

Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.

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Transcript:

Beth Faiman:

So, my role in treating patients with multiple myeloma is very variable. So, I am a member of a treatment team. I have doctors that I work with, as well as nurses, other nurse practitioners, and social workers.

Sometimes I’m the first face that patients will see when they come to the cancer center. And hopefully, I’ll be fortunate to follow them along with their treatment trajectory.

Some of the other things that I do for patients who have multiple myeloma  — I’m involved in the diagnosis and management of their care. I am responsible for obtaining and reviewing their laboratory results at each visit, and if they have a certain symptom that needs to be controlled, I am oftentimes the one that they call or reach out to for some answers.

I think it’s very important for patients to meet with a myeloma specialist at least once. I understand there are a lot of barriers from transportation to finances to just not feeling comfortable with going to an outside institution. But working at a major center which focuses on multiple myeloma for the last 20-plus years, I can really see the value in even just getting an opinion.

So, one of the things I try to encourage is for patients to come and meet with us once or twice because not only are we educating the community physician, but we’re also partnering in their care. So, if they’re getting an injection once or twice weekly, we can see them every couple months, review their laboratory values, and they can get care closer to home. And so, there’s that partnership that forms and then you’re not only educating the patient, but you’re oftentimes educating the community physician or provider that might only see one or two myeloma patients in a year.

So, when patients come to me all they know is that they’re in a cancer center. Oftentimes they have to go on whatever information they’ve been told. I see consultations independently at the Cleveland Clinic so sometimes they’ve been told by their outside physician or nurse practitioner that they might have a blood cancer. Sometimes they fall into a category of patients that have what’s called MGUS or monoclonal gammopathy, so these individuals might not even need treatment forever.

Others might have what’s called smoldering myeloma, which is a different second level, and those patients might need treatment within two to five years. But for those that have been told they have multiple myeloma, there’s a myriad of emotions, and oftentimes I like to take time, share with them first what I know about their case, get time to know them on a one-on-one basis. What they like, what they don’t like, what they do for a living, their hobbies. Because you’re building a relationship.

You might be with that patient for many, many years. So, taking the time to let them know what I know about their case, finding out about themselves, and then pooling it all together with what we need to do now, with this information is oftentimes a good way to start a relationship with the patient and their caregiver.

Get The Best Myeloma Care NOW: A Physician’s View

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Get The Best Myeloma Care NOW: A Physician’s View from Patient Empowerment Network on Vimeo.

Advocating for yourself is critical when diagnosed with multiple myeloma. Dr. Peter Forsberg details the value of collaborating with your healthcare team on treatment decisions.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

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Transcript:

Patient education and self-advocacy I think are critical in multiple myeloma. Myeloma is a complicated disease. Getting your head around it can be challenging. Beyond that we have more and more treatments. Treatments are fairly complex. Our goals can be pretty different patient to patient. So really, patient education can be a key to understanding that and removing layers of complexity from something that can be a little challenging to get into.

I think self-advocacy is also really important in that, sometimes you can feel swept up into a wave of what the next treatments are gonna be, what the next steps are. So, making sure you’re taking time to voice your opinions or concerns for yourself, to make sure that you’re not leaving stones unturned in terms of what your best options are, what the best next steps are, what treatments or testing might be available.

I think myeloma, maybe more so than even some other diseases because it’s such a unique type of cancer, one where patients are often dealing with it for many years… Making sure that there’s a good level of education that evolves over time can help make sure that the patients get the best out of their treatments; to make sure that they’re able to have the most fulfilling experience dealing with their cancer and with their cancer team, and making sure that they’re advocating to get all options available to them in the mix potentially.

I think patients are often very thoughtful about knowing that providers are busy and that clinic can be kind of fast-paced, but I want to make sure that they know that the last thing that they’re ever doing is bothering me or other members of my team when they ask questions. I think one of the keys to making sure that everybody is comfortable with the steps we’re taking with their myeloma is to recognize that it’s a team. And the patients and myself and other members of my team, you know I think that the goal is for all of us to be on the same page and to understand what we’re working towards.

So, I think that my philosophy about how best to take care of patients tis to try to make it as collaborative as possible. To make sure people understand what we’re doing and why. And to be all on the same page I think you have to feel comfortable to take a moment to say, “Why are we doing this?” or to voice concerns about what’s going on or what the next steps might be.

Relapsed and Refractory Multiple Myeloma: What’s the Difference?

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Relapsed and Refractory Multiple Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg defines relapsed and refractory myeloma, terms often used when discussing myeloma, but not always explained.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

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Transcript:

So, I think that in differentiating relapsed and refractory multiple myeloma, they sometimes get lumped together and you might say relapsed and refractory myeloma. And that’s partly because that’s groups of patients who are included in the same clinical trials or different things like that.  But they are different things. A patient who is relapsed may have been off treatment for a substantial amount of time before they relapsed. A patient with refractory multiple myeloma, they may be refractory to just one type of medicine.

You may be refractory just to lenalidomide if you’re myeloma progressed or relapsed while you were taking it, or it may mean that you have not responded very substantially to any of the medicines you have received so far. So, there are different categories even within refractory myeloma. Whether it’s just to one or multiple different medicines, or if it’s more broad where we’re having a hard time getting a response with even different combinations.

Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take

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Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take from Patient Empowerment Network on Vimeo.

A myeloma diagnosis can be overwhelming and, in some cases, patients and caregivers may feel frantic or scared. Dr. Forsberg outlines clear steps to approaching a myeloma diagnosis. Want to learn more? Download the Find Your Voice Resource Guide here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

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Transcript:

Dr. Peter Forsberg:    

I think being diagnosed with myeloma can be a big shock, so I think the first step is to sort of take a beat and work on getting the logistics of care lined up. I think the first thing you want to do is make sure you have a care team in place you’re comfortable with. That means support from friends and family. It also means providers you’re comfortable with. Usually you’re diagnosed by an oncologist and hopefully that’s somebody that you already feel a good comfortable relationship with.

I always think it’s worthwhile to consider getting a second opinion, another voice. And that could be even if you’re diagnosed at the most high-power academic center in the country, or whether it’s in a more community-type setting. I think having another voice just to make sure everything makes sense, that it seems fairly consistent, and that you understand things as thoroughly as you can. But you do want to get the ball rolling in terms of making a care plan and moving towards therapy if that’s the next step, without taking too much time.

So, I think it’s kind of a balance between making sure you’re really comfortable with all the participants in your care team, whether that’s one or more physicians if you have a primary and somebody else who helps to consult or guide as a more specialized voice. But also balancing that with moving towards the next steps in your treatment because often it is fairly time-sensitive to get going with management of the myeloma.

I think that the initial conversation can be a pretty complicated one. It’s one where we want to take plenty of time to work through a variety of different questions. I think some of the most important questions can be fairly open-ended ones. Ones that sort of help to take the conversation to maybe more broad areas. So, asking things like why. Is there a specific reason why we’re choosing this approach? What are the goals for our treatments?

So that everybody can try to get on the same page in terms of understanding what the rationale is, maybe making sure that nobody is missing anything in terms of what a patient’s goal is and that those are in line with the providers and that those priorities are understood.

I also think it’s important to ask pretty specific questions. I think lots of patients are pretty good about that in terms of trying to nail down expectations for logistics of medicines, things that we should expect as we start with treatments. So, I think it’s a balance between making sure we get into those fine-tuned details as well as taking a step back and asking those broad questions so that everyone can make sure that they’re seeing things in a similar way.

Facing a Cancer Diagnosis: Advice From An Expert

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Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key. Download the Office Visit Planner and bring it to your next appointment here.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

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Transcript:

One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources.