How Can Myeloma Patients Advocate for the Best Care?

 

How Can Myeloma Patients Advocate for the Best Care? from Patient Empowerment Network on Vimeo.

Dr. Peter Forsberg shares advice for myeloma patients on why it’s important to speak up about symptoms and side effects, how to become a better partner in their care, and the role of a second opinion.

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:

Katherine:                  

What is some key advice that you give patients when they’re considering their treatment options?

Dr. Forsberg:             

Well, I think one important one is to always feel comfortable communicating with your provider. I think that there no by the book questions, list of questions, that’re the right questions to ask. I think the more important thing is trying to establish a good working relationship with your treatment team. Myeloma is much more of a marathon than it is a sprint. So, getting comfortable with your team, getting comfortable with a relationship and a partnership that can be often many years in duration, are really critical steps.

So, I think laying that foundation, feeling comfortable asking questions, trying to understand why. Understand how and what are tools to monitor what the myeloma will be and what indicates success or a need for something else. Those would all be critical pieces that I would encourage patients to feel empowered to be part of.

Katherine:                  

Patients can sometimes feel like they’re bothering their healthcare team with the comments and the questions. So, why is it important for patients to speak up when it comes to their symptoms and side effects?

Dr. Forsberg:             

Well, I think feeling comfortable being vocal about what’s going on is one of the key issues to navigating myeloma successfully. Being aware of issues, even if they may seem minor or insignificant, they may be an indicator for something that is emerging in terms of a treatment related side effect that we wanna be aware of. There are treatment side effects that we are willing to work through. But it can be very broad in terms of the spectrum of how we maneuver through different side effects.

And additionally, we always want to be aware of any issues that may be going on that could be a sign for what’s happening with the myeloma. So, trying to be vocal. Not only to understand what’s going on, what our treatments are, how successful are we at any given point in time, where things stand. But also, to make sure that you are putting things on your provider’s radar are key. So, lots of folks want to be good and compliant patients and we certainly appreciate that hope. But being assertive in terms of issues that may be coming up or questions that you may have, can really make for a much more successful long-term relationship in terms of how we manage the myeloma.

Katherine:                  

Well, do you have suggestions on how a patient could feel more confident in speaking up and becoming a partner in their care?

Dr. Forsberg:             

Well, certainly using tools like, if you found your way to this material, I think is a great first step.

Becoming a little bit more versed in the myeloma, in the language of the myeloma, what these tests that we use are. What their results might be. Using a number of great patient specific organizations are great first steps. So, being proactive about learning, to some degree about the myeloma. And then feeling comfortable asking that first questions. Once you begin the process of unlocking the myeloma and demystifying what it is and what these tests mean and where we stand, then that can really build on itself and allow folks to feel more in control of their myeloma and their myeloma journey.

Katherine:                  

And if a patient isn’t feeling confident with their treatment plan or their care, do you recommend that they seek a second opinion or consult a specialist?

Dr. Forsberg:             

Well, I never think it’s a bad idea to think about a second opinion or seeing a myeloma specialist. Even if you feel very comfortable with your treatment plan. Myeloma’s a unique disease and our approaches for it may be somewhat different, person to person.

And your needs as a myeloma patient my change and they may change somewhat abruptly. So, having seen someone who specializes in myeloma as part of your care team, and usually it is a care team. And there’s different models we sometimes work with in terms of both local or primary oncologists, as well as more specialized academic oncologists. We’re used to working through all sorts of models to provide the best possible care for patients. So, I never think it’s a bad idea to ask about that. Because having that more robust team is usually mostly benefit without adding a lot of headache. 

Debunking Common Myeloma Misconceptions

 

Debunking Common Myeloma Misconceptions from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Peter Forsberg discusses common misconceptions about the disease and explains who may have an increased risk for developing myeloma.

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:

Katherine:                  

Are there common misconceptions you hear when you see a new myeloma patient for the first time?

Dr. Forsberg:             

Yeah, I think some of the more common questions that come up involve those questions like I mentioned about things like stage and understanding this unique characteristic to myeloma. Myeloma unfortunately remains an incurable disease in the year 2020. So, some of the questions come up regarding what prognosis or treatment approaches may entail. Certainly, going to not up-to-date sources can lead to a lot of misconceptions about what our options are and what our outlook might be for myeloma.

And certainly at times, patients wonder where the myeloma came from. Is there something that I did or that I was exposed to that was a real driver for me to develop this? That’s a really common question that comes up. And unfortunately, or fortunately, the answer is not really any that we know well about. So, let me rephrase. So, one question that comes up a lot is what may have caused the myeloma.

Is there something that someone did or was exposed to that drove the myeloma? And truthfully, at this point there aren’t a lot of drivers for myeloma that we know about. So, usually that’s something that can be a little hard to understand or to reconcile. But it is a type of disease that can, unfortunately, can affect anyone. It does get more common as people get older. But aside from some potential genetic impact or mild increased risk in family members and with certain ethnic groups. Not a lot of historical things that were done might drive the development of myeloma.

What Key Tests Should Follow a Myeloma Diagnosis?

 

What Key Tests Should Follow a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.

What are the key tests that should take place following a multiple myeloma diagnosis? Dr. Peter Forsberg details the appropriate tests, including imaging and blood tests, that may aid in assessing the risk and informing treatment options.

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:

Katherine:                  

What testing should take place following a myeloma diagnosis?

Dr. Forsberg:             

So, after a patient is diagnosed with myeloma, or with suspected myeloma, a number of tests take place to both understand the myeloma. Get some sense for how aggressive the myeloma might be and understand what may be being caused by the myeloma at any given time. So, that involves a number of blood tests. It involves checking urine, doing at least one 24-hour collection of urine. Doing imaging, tests to look at the skeleton or different areas of the body for myeloma involvement.

And a bone marrow biopsy and what’s called an aspirate.

So, all those tests together are used to help confirm myeloma, to understand what’s going on with it and then to understand some of the characteristics of it that might be important over time.

Some of the more complicated tests when people are initially diagnosed with myeloma to get their head around are some pretty important blood tests that we monitor pretty closely.

Things called the serum protein electrophoresis and serum light chain assays. And basically, those are tools that help us measure antibodies. Myeloma is a disease; it comes from cells that make antibodies or fragments of antibodies. And by measuring those, we can understand the myeloma, we can give it some names. And then we can also measure it over time. So, those can seem a little bit impenetrable to patients when they’re first diagnosed, but they’re pretty important for patients and for people treating the myeloma to understand where the myeloma stands and how things are going.

Katherine:                  

What about genetic testing?

Dr. Forsberg:             

So, the main way that we use genetic testing in multiple myeloma is through something called, cytogenetics. And cytogenetics is a way for us to evaluate chromosomes. Chromosomes are in cells and that’s where genetic material is contained. And in myeloma, some of the main vents that drive myeloma cells to change from normal plasma cells come through changes in chromosomes.

And so, those chromosome changes that can be detected with different tests, sometimes they’re called karyotyping or what’s called FISH can give us a sense for some of the changes that may drive the myeloma or have driven it in the first place.

What is Multiple Myeloma?

 

What is Multiple Myeloma? from Patient Empowerment Network on Vimeo.

What is multiple myeloma exactly? Dr. Peter Forsberg defines myeloma, explaining how it affects bone marrow, and shares details about myeloma statistics and treatment in the U.S.

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. Forsberg:             

So, multiple myeloma is a blood cancer. It comes from cells that live in your bone marrow called plasma cells. They’re part of your immune system. And when they do their job, they help protect you from infections.

They’re antibody producing cells. In myeloma, unfortunately something changes in those cells and they begin to grow and live beyond what they normally would. So, myeloma is a disease that results from that and when myeloma is diagnosed, it’s usually because those plasma cells or the antibody they produce has started to cause problems, to cause destructive changes or symptoms. So, that’s multiple myeloma.

And it’s maybe a little more common than people sometimes think. It’s got an unusual name, so most folks haven’t really heard of myeloma when they’re diagnosed with it. But it is the 14th most common cancer and there are about 30,000 cases diagnosed each year in the U.S. and at this point, more than 150,000 people living with myeloma. And that’s because more and more people are living with myeloma all the time. Advancements in treatment have made people live longer and live better with myeloma.

Maintenance Therapy and Continuous Therapy in Myeloma: What’s the Difference?

Maintenance Therapy and Continuous Therapy in Myeloma: What’s the Difference? from Patient Empowerment Network on Vimeo.

Nurse Practitioner, Beth Faiman from the Cleveland Clinic, explains in maintenance therapy versus continuous therapy in multiple myeloma, which can sometimes be confusing.

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:

I’d like to define the difference between maintenance therapy and continuous therapy. When patients have a stem cell transplant, they have a pre-therapy, the transplant consolidation is the second step, and then they have a maintenance to maintain that remission. For some people that don’t have a transplant, you can just stay on continuous doses of a therapy that’s very well tolerated. So, maintenance and continuous can sometimes be confused, but it’s — maintenance is lesser doses of something that got you into remission and continuous is just kind of staying on that same dose of tolerated medication.

How Side Effects Can Be Managed in Myeloma

How Side Effects Can Be Managed in Myeloma from Patient Empowerment Network on Vimeo.

Beth Faiman, a nurse practitioner specializing in multiple myeloma, discusses side effects in myeloma and shares what can be done to prevent or reduce these issues in patients.

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:

In multiple myeloma, there are numerous side effects, but the most common side effects of treatment are oftentimes the lowering of blood count. So, for example, depending on which type of therapy you’re on, maybe it’s lenalidomide or carfilzomib or some others, you can get some lowering of blood count.

So, those blood counts need to be regularly monitored. Another side effect might be peripheral neuropathy. Now, that’s more common in drugs such as bortezomib or thalidomide.

And so, it’s important to look for that symptom and report if you have any numbness or tingling in your fingers or feet, or dizziness, or anything odd to your healthcare team. Because by adjusting the medication doses, then those patients can actually stay in treatment longer with better control.

Other things with the monoclonal antibodies, some of the newer drugs that are currently available will produce an increased chance of infusion reactions. Now, that’s only at the very beginning of the infusion. So, once patients have received that therapy,  they can feel comfortable to keep taking that with lesser chance of side effects.

And then, finally, many drugs with myeloma have an increased risk of blood clots. So, patients should stay active, keep well-hydrated, and know that they’re at an increased risk. Most providers will recommend a baby aspirin for all patients taking these drugs like lenalidomide, thalidomide, pomalidomide, and carfilzomib. And that’ll lessen their chance of blood clots.

The last thing I’d like to add in is an increased risk of infections. Myeloma is a cancer of the bone marrow plasma cells that are responsible to protect you from getting sick, and unfortunately, they don’t work. Many therapies will further weaken the immune system. So, getting a seasonal influenza vaccine, a pneumonia vaccine every five years, and making sure they take shingles prevention is a very effective way of keeping yourself healthy.

Lab Tests in Myeloma: Key Results to Monitor

Lab Tests in Myeloma: Key Results to Monitor from Patient Empowerment Network on Vimeo.

Nurse practitioner, Beth Faiman, discusses laboratory tests for multiple myeloma, including which results should be monitored closely and how different labs may vary.

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:

Laboratory results can be quite anxiety-provoking for some patients and others are pretty easygoing about it. One of the most important things I share with patients whether they come to see me every month, every three months, or sometimes we share care with referral providers is always take ownership of your own care.

You are your best advocate and it’s important to find out what kind of myeloma you have and what they myeloma specialist thinks is important in monitoring your labs. So, for example, there are kappa and lambda light chains, and everybody has a different form of myeloma. Find out the best way that they can monitor their myeloma. Also, key lab results like blood creatinine level, reflect kidney function, hemoglobin carries oxygen and that’s your anemia number. So, finding out those important key lab values and keeping track of them over time can help feel — patients feel empowered often times in their care.

But with that, I always have the caveat, take the results with a grain of salt because there are lab variations within one’s own institution or when you’re going outside of institutions if we partner with care. So, that can be about 20/25 percent lab error each month depending on the test result.

Lab values can fluctuate quite rapidly. So, if I draw a serum creatinine level in the morning, and it might be high indicating kidneys might not be functioning normally, I can encourage them to have some hydration or — and then recheck that lab value and it might go down. The same with the serum-free light chains and M-Spikes.

The lab variation within a single day can be very, very, very diverse. So, it’s important to say, hey gosh, it’s abnormal one day or one hour of the day, but then the next time it can be normal. Or normal for you a well, because there are normal values for one patient that’s abnormal for the other, and vice-versa.

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

 

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

 

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.

What Does Remission Mean in Myeloma?

What Does Remission Mean in Myeloma? from Patient Empowerment Network on Vimeo.

The concept of remission in multiple myeloma can be complex. Myeloma specialist, Dr. Peter Forsberg explains. 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 also think that one thing that can be a little challenging in multiple myeloma is the concept of remission. I think in multiple myeloma what we think of as remission may be a little bit different than in other diseases, and I know that can be confusing for patients. Remission may just mean an interval of myeloma control. It may still be a time where you’re on active therapy or where the active therapy that you’re receiving hasn’t changed too substantially, but where the myeloma is under control whether it’s still detectable or not. So, that name can be a little bit different than what we think of as remission in other types of cancer and that can be a little confusing.

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

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?

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

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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Office Visit Planner

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.

Diagnosed with Myeloma? An Advocate’s Key Advice

Diagnosed with Myeloma? An Advocate’s Key Advice from Patient Empowerment Network on Vimeo.

Where do you start after being diagnosed with a myeloma? Myeloma survivor and advocate, Jack Aiello, shares key advice on second opinions, keeping up with lab tests, and educating yourself about your myeloma.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Jack:

So, I’m often contacted by either newly diagnosed patients or a friend of a newly diagnosed patient and asked to – by that patient, what should they be doing.

And I usually give several pieces of information. One is, as I previously mentioned, getting second opinions are important, but I’ll also talk about how important it is to understand your lab values. It’s not so important what a particular number is that month, but what is important is the tracking or trend of those lab numbers. You should be asking your doctors what myeloma markers are they looking at to determine if a treatment is working or not. You can become familiar with those markers as well and track them yourself.

There’s some tools out there; you can also just put them in a spreadsheet if you like. But it’s a good way to kind of stay on top of your own myeloma; it’s also helpful, if you do ever want to get a second opinion, to be able to share that information with others.

And I think that when talking with that newly diagnosed patient as well, I think it’s important to remind them that – there has been so much progress forward; they will hear that the good news is there are many, many more treatments out there for myeloma, certainly than when I was diagnosed 24 years ago.

But the negative side of that is, there are certainly many, many more treatments out there than when I was diagnosed 24 years ago, but you don’t necessarily know what the best treatment is for you. So, that goes back, again, to working closely with your oncologist, working with that second-opinion doctor, understanding your numbers, understanding what your myeloma stage was and maybe what your risk factors are that you can learn from myeloma tests that are being taken, and try to get as full

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate

Staying Abreast of the Latest News in Myeloma: Tips from an Advocate from Patient Empowerment Network on Vimeo.

Keeping up with all the changes in myeloma treatment and research can be daunting. Myeloma survivor and advocate, Jack Aiello, shares his tips for keeping up with the latest, including a list of myeloma educational resources.

Jack Aiello is a multiple myeloma survivor and patient advocate. He is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. More about Jack here.

See More From The Pro-Active Myeloma Patient Toolkit

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Transcript:

Jack:                           

So, it’s interesting. I’ve mentioned previously how much is changing in myeloma, and I’ve been asked a question of, “How do you stay abreast of all of those new changes?”

And there are several ways. There are some excellent organizations that focus on myeloma. The International Myeloma Foundation, the Multiple Myeloma Research Foundation, the Leukemia & Lymphoma Society, Myeloma CrowdCare are just four of them to mention. PEN is Patient Empowerment Network, Patient Power is another site that both offer expertise and help with myeloma. So, websites is a great tool. Many of those websites also offer both webinars and seminars and that can be an excellent resource to learn about myeloma or ask specific questions and get them answered during a live webinar.

And typically, all those webinars are recorded for later replays, so that you can listen to them if you weren’t available to listen to them live. I’m fortunate also that I’m able to attend several of the myeloma conferences. There’s a conference called ASH, the American Society of Hematology, that I’ve attended for the last 10 years. There’s a meeting of the International Myeloma Working Group that I’ve been fortunate to be invited to for the last six or seven years.

These are meetings that doctors meet at to determine best treatments for patients; they provide the latest on research of newer treatments for patients as well, and I get to hear it firsthand. And I think, as I said, the support groups are a good way to stay abreast of the information was well.

Most patients don’t want or need or are not going to get as deeply as involved as I am, but those support groups are a terrific resource for hearing what’s happened over the last month or two. There’s a drug just approved last month for myeloma, and there have been drugs approved previously in the years previous to 2019. So, I think that there are a number of ways to really become educated and more knowledgeable about myeloma.