Tag Archive for: myeloma care

CAR T-Cell Therapy Support | Questions to Ask About the Process

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What questions should patients ask when considering CAR T-cell therapy? Nurse practitioner Donna Catamero shares key advice for patients and care partners, available resources, and emphasizes the importance of financial and logistical assistance when accessing treatment.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero. 

See More From Thrive CAR T-Cell Therapy

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Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

 Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

 CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

Transcript:

Katherine Banwell:

When meeting with someone considering CAR T-cell therapy, what are some questions that they should be asking about the process? 

Donna Catamero:

So, I think first, “Am I a candidate for CAR T?” Certain comorbidities may put patients at higher risk for complications, or they might need to have additional testing – lung and heart functions – but “Am I a good candidate?” 

“Do I have caregiver support?” Again, support network of caregivers for patients, because patients do need to have someone with them during that CAR T process, and “What are the resources available to me receiving CAR T?” Patients live far from CAR T centers. What kind of support that we can provide patients – is it hotel stays, is it transportation – to really get patients to their CAR T therapies? 

Katherine Banwell:

Right. There’s the whole financial aspect of therapy that some – it can be a difficult situation for some patients. 

Donna Catamero:

We’re very fortunate that both products have patient support services that help patients. They will provide hotel, transportation, food. 

So, we are trying to get more patients to the CAR T therapy. So, geographical constraints shouldn’t be a barrier, so we are really helping bridge patients to get to the CAR T centers.   

 So, to access some of these resources, talk to your healthcare team, social work, but also, again, I empower patients. Go directly to the manufacturer – Johnson & Johnson, Bristol Myers Squibb – you can go directly to their websites and find out more information, but your healthcare team can kind of, again, be a bridge to get patients that support.  

Being Empowered | The Importance of Understanding Myeloma

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How can patients and care partners feel empowered when facing a myeloma diagnosis? Nurse practitioner Donna Catamero highlights the importance of education, shared decision-making, and a strong emotional support network, along with using trusted sources for reliable information. 

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

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CAR T-Cell Therapy | Care and Monitoring Post-Treatment

CAR T-Cell Therapy | Care and Monitoring Post-Treatment

 Current and Emerging CAR T-Cell Therapies for Myeloma

Current and Emerging CAR T-Cell Therapies for Myeloma

 CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

As a provider, how do you empower care partners and patients who have been diagnosed with myeloma? 

Donna Catamero:

So, education, education, education. Knowledge is power. Learn everything you can, attend your support groups, attend educational seminars, and be part of your decision making. So, we called that shared decision making. You’re part of the healthcare team. You need to tell your providers what your goals of therapy are, and in order to do that, you really need to educate yourself on what kind of therapies, what are the supportive care options, and be part of that discussion. 

Katherine Banwell:

And how does one educate themselves? Are there websites that you would recommend they go to? 

Donna Catamero:

There are several foundations and organizations that I find very useful for patients. Our instinct is to go to the Google machine and type in our thoughts, but we do have great foundations. The Multiple Myeloma Research Foundation, the International Myeloma Foundation, HealthTree – all great resources for patients. They provide education, educational seminars, support groups, mentors. There are hotlines where patients can call and get the information right at their fingertips, and this is really from reliable sources. 

Katherine Banwell:

How do you counsel patients on coping with the emotional side of myeloma? What advice and resources are available for them there? 

Donna Catamero:

So, it’s important to try to get yourself a good emotional support network, so your family, your friends, your fellow myeloma community can really provide support for patients, and really – when you get – I’m going to repeat that. When you get a devastating diagnosis, patients can tend to withdraw from family and friends, but family and friends – your support network – can really help patients get through very trying times, so, your caregivers, your family, your friends, and like I said, the myeloma community is here to help. 

Undergoing CAR T-Cell Therapy? Why Managing Overall Health Is Essential

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Planning to undergo CAR T-cell therapy? Nurse practitioner Donna Catamero explains the importance of maintaining overall health before CAR T-cell therapy, staying organized during treatment, and how healthcare teams are improving the management and anticipation of side effects.

Donna Catamero is a Nurse Practitioner and associate director of the Multiple Myeloma Clinical Research Program at Mount Sinai Hospital in New York City. Learn more about Donna Catamero.

See More From Thrive CAR T-Cell Therapy

Related Resources:

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

CAR T-Cell Therapy | Key Considerations for Myeloma Patients

 Planning for CAR T-Cell Therapy | Advice for Myeloma Patients

Planning for CAR T-Cell Therapy | Advice for Myeloma Patients 

 CAR T-Cell Therapy Support | Questions to Ask About the Process

CAR T-Cell Therapy Support | Questions to Ask About the Process

Transcript:

Katherine Banwell:

Wow, that’s great. Why is it so important for those undergoing CAR T-cell therapy to manage their overall health? 

Donna Catamero:

So, the healthier you go into a treatment, the better you’re going to feel, and this includes your activity level, so, really maintaining activity, getting out there, walking, exercising, eating things in moderation, having a healthier diet, and I just think the better you feel going into therapy, the better you’re going to tolerate therapies. 

Katherine Banwell:

Okay. Managing life before and after CAR T-cell therapy can be a really big undertaking. What tips do you have for staying organized at home, especially related to medication and follow-up appointments?  

Donna Catamero:

So, CAR T therapy can be very intense up front. There’s a lot of appointments, a lot of things you need to do to prepare yourself to get ready to collect your T cells and to receive your T cells, and it’s a lot of appointments, a lot of scheduling, and treatments to gear up for that cell infusion. So, what we do for our patients is getting calendars for patients, diaries for patients, to really keep them organized. It is a lot up front, but then, after a patient receives their T cells, they are then more on a maintenance phase, and life will get easier. It’s just heavy up front.  

Katherine Banwell:

Would you say that healthcare teams are getting better at managing and anticipating CAR T side effects? 

Donna Catamero:

Absolutely. So, we have several years of experience now. We can anticipate the timing of certain side effects, we manage them very well, many institutions are now doing CAR T therapies as an outpatient, so we really have gotten a great handle on how to manage these side effects, when to anticipate these side effects. And then, even long-term monitoring and managing patients several months post the CAR T infusion, infection prevention, etc., we have done quite well and been successful with our patient outcomes.   

Charise Gleason: Why Is It Important for You to Empower Patients?

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Charise Gleason: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can patients and families be empowered? Advanced practice professional Charise Gleason from Winship Cancer Institute discusses her perspective and communication methods that have shown benefits for her myeloma patients.

See More from Empowering Providers to Empower Patients (EPEP)

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Dr. Craig Cole: Why Is It Important for You to Empower Patients?

Transcript:

Charise Gleason:

I think it’s important to empower our patients, and we do that from day one. Patient comes to us, we’re starting to develop that relationship. And the discussions that we have early on can be very different from later, but we have to continually reinforce, ask questions, give patients the opportunity to ask us questions. I know when I talk to a patient about a clinical trial, and I’m documenting, I put that back in, patient or family member or care partner was given the opportunity to ask questions.

Our clinics go very quickly, and you have to make the time for your patients. So you have that relationship, and they know that they can bring issues to you. Sometimes we don’t get it right either, and you’ve got to own that and move on to that next step. So you continue that relationship. Patients are going through losing control with having a cancer, and like myeloma and many times patients never even heard of multiple myeloma until they come into our world.

So it is an ongoing open communication, and we don’t make decisions for them. We give them options and upfront or early relapse, you may have far more options than you do in that relapsed/refractory setting. But you’ve got to know what’s important to your patient and what their goals are. And, are they still working? Our patients vary in age. But you want to think about where your patient is, what’s important to them, and you don’t know that unless you ask the questions and have that communication. Our patients are very savvy. We go to meetings. The first thing they want to know is what did you learn? Even when they’re doing well on their current treatment, they want to know what’s next. What’s out there for me if this stops working?

 When we’re in that biochemical relapse phase where we don’t have to change treatment, we’re already having those conversations about what are those options next for you? And so I think that having that team approach, that open communication is really important for our patients and empowers them to make good decisions. As an advanced practice provider, it’s important for me to explain my role, right?

Patients will come to a practice, and sometimes they’re surprised that I don’t see the physician every time I come. So I think it’s instead of ignoring that and not telling patients, I think it’s important that we describe our roles in that care as well. That, yes, I also specialize in multiple myeloma. I collaborate with your physician. We talk about you, even if you’re not seeing your physician. And so I think that patient and family understanding the rest of the team and what we bring to the table for them is essential as well. 

Best Practices: Crafting Myeloma Clinical Trial Conversations to Individual Patient Needs

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Best Practices: Crafting Myeloma Clinical Trial Conversations to Individual Patient Needs from Patient Empowerment Network on Vimeo.

What are some ways for myeloma nurses and care providers to optimize patient care? Advanced practice provider Charise Gleason shares her perspective on how care team members support patients and collaborate with physicians and research team members. 

Download Resource Guide  |  Descargar guía de recursos

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Transcript:

Dr. Nicole Rochester:

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.

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INSIST! Myeloma Resource Guide

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support

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CAR T-Cell Therapy Care Partners: Tools for Accessing Support from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

 What Is CAR T-Cell Therapy for Myeloma?

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 How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? 

Transcript:

Katherine:

What support services or resources are available for care partners of patients who are undergoing CAR T-cell therapy?

Dr. Mehta:

Unfortunately, I have to say that there are not that many support systems existing. It depends on the center most of the time. And, remember, that many of the centers – you know, CAR T is not offered at every community center.

Usually, they are certified centers. So, on an average, patients might have to travel to go to the center, right? So, it’s mainly center dependent. Now – and, you know, like, if I talk about my center, as I was mentioning, that I like to have the caregiver as a part of the process so they are aware what the patient is going through. Second person is – or second team person is our clinic nurse or CAR-T coordinator who actually talks to the patient in depth as well as patient’s caregiver.

Now, if you are living farther away from the center, three hours, four hours, five hours, in that case, where do I lodge myself, whether there is any other support system? We are going to stay here. Where I’m going to eat? Where is the center? Where do I have to them, whether I have to take them daily or not? So, those kinds of information is provided mainly by the center.

And centers also have many other support systems that we can tap in. The most important is to highlight is CAR T is not cheap. It’s very expensive treatment, right? So, there’s an extra step of insurance approval. Well, what is your copay? So, financial toxicity so to speak also come in picture and not only for the patients but their caregiver also.

We need to sit down if they need additional help. What other sources? What are the other agencies or maybe a local church or local community it can help? One other thing that our center has done, which has helped quite a bit, we have a patient ambassador. There was a patient who had gone through CAR T, and he had such an experience that he decided to offer his service to other patients who were going through CAR T. And he is always available.

So, he always – whenever he comes for the clinic visit and says “I’ll be happy to talk to anyone including his family, right, his mother and his father. They’re available that if [they support the patient], the caregiver, we would like to talk to them. And we would like to share our experience. And, if they have any questions, we can share the resources available to go through CAR T because, at the end, it’s a potentially curative option.

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

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Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy? from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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 What Are the Risks of CAR T-Cell Therapy?

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 How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape? 

Transcript:

Katherine:

What is the role of a care partner of a patient who is undergoing CAR T-cell therapy?

Dr. Mehta:

CAR T-cell therapy is very important therapy and has evolved as a potentially curative therapy in a relapse setting. It does have a downside. And downside, when I say is side effects, which needs to be monitored closely, and it has to be detected early and intervened early, right? Steroids, as well as tocilizumab (Actemra) or anti-IL-6 treatment, are very, very effective in mitigating some of the side effect of CAR T.

But the whole process is very involved, right? You have a patient identified. Then you go through collection. Some people might get some bridging therapy, then chemotherapy, and then they get admitted. Importantly, after the infusion for two months, some of them could have neurological side effect, and that’s why for label and for safety, the patients cannot drive for two months or operate heavy machinery.

So, the whole process requires a good support. In my opinion, when we screen a patient, that “Okay, somebody’s referred to me, or my patient going through a CAR-T process,” how to make sure that they have a caregiver. And caregiver is immensely important, not only for the safety but also moral support for the patient, right?

Katherine:

Yeah.

Dr. Mehta:

And, importantly, what I make sure is that they’re part of the whole discussion. When we sit down and discuss the whole process, side effects, what’s going to happen, they are there.

They know what their loved one is going to go through. So, caregiver support is immensely important. In some patients, unfortunately, they don’t have a caregiver support. For the sake of safety, we might have to give them opportunity to see whether they can actually secure some sort of support. Maybe their distant family member living in a different state and if they can live with them, or their neighbor, or their close friends. If they can bring them to the clinic visit so that we can also discuss with them the whole process. So, caregiver is a very, very important and vital part of the whole process of CAR T.

Are Myeloma Therapies Showing Deeper Responses?

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Are Myeloma Therapies Showing Deeper Responses? from Patient Empowerment Network on Vimeo.

Are multiple myeloma patients showing deeper responses to therapies? Dr. Sikander Ailawadhi from the Mayo Clinic discusses treatment response and the potential for a myeloma cure.

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Transcript:

Lisa Hatfield:

And one question comes to mind that I have heard from other myeloma patients, and you mentioned that we are seeing deep responses, or they’re seeing deep responses in clinical trials for some of these in refractory relapsed patients. Do you think that bringing these…do you think it’s possible to bring some of these therapies to the forefront of myeloma care, maybe an induction therapy or after first relapse, and if so, do you think that that could lead to even deeper responses in those patients because their immune system isn’t quite so tired and potentially cure?

Dr. Sikander Ailawadhi:

Again, Lisa, that is such an important and such a spot-on question that you’ve asked because absolutely, you can imagine, if we are thinking of harnessing the body’s immune system, the T cells, but we’re talking about patients who have had five, six, seven, then, prior lines of therapy. But that immune system is also a little exhausted, a little tired, but if you were to use the immune system of a newly diagnosed patient, patient who’s not been created that much…well, those T cells are going to be way more robust.

Whether we use a CAR-T kind of strategy where we remove the T cells, train them and put them back, or we use a bispecific kind of strategy where we put in a drug that pulls the T cells closer to the myeloma cells and kills them using these smart thoughtful strategies which are not just dumb drugs that go in and kill everything, these are smart targeted drugs, using them early on in the treatment paradigm will certainly be more beneficial.

In fact, there is some data showing up where some of these strategies like CAR-T cell are being used sooner in the treatment paradigm. But again, as drug development goes, We first want to make sure it is safe, it is effective, and typically the starting point is patients who have exhausted other options, but very soon we will be seeing all of these strategies, and in fact, some of these strategies combined with each other coming in, early lines of therapy and hopefully providing excellent, deep responses, and you mentioned that term that has been very invasive for us cure, I don’t know if we are…

So we are not there yet. I don’t know how long it’ll take us to get there, but there is certainly much more hope today for getting to that cure than it was before. 

Expert Advice for Navigating Myeloma Treatment and Care Decisions Guide

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Thriving With Myeloma: What You Should Know About Care and Treatment Guide

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

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How Can Myeloma Patients Take Disease Ownership and Connect With Resources? from Patient Empowerment Network on Vimeo. 

What actions can multiple myeloma patients take to ensure the best care? Expert Dr. Joseph Mikhael shares his perspective on how patients can take ownership towards optimal myeloma care.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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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. 

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

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How Will Telemedicine Impact Multiple Myeloma Clinical Trials? from Patient Empowerment Network on Vimeo. 

What impact has telemedicine had on multiple myeloma clinical trials, and what effect will it have on trials in the future? Expert Dr. Joseph Mikhael explains the impact of telemedicine early on in the COVID-19 pandemic, how he uses virtual visits with his patients currently, and the role and benefits of telehealth in the future of myeloma care.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

What Multiple Myeloma Populations Will Benefit from Telemedicine?
 

Transcript:

Dr. Joseph Mikhael:

COVID-19 has impacted our lives in just about every way imaginable, and in multiple myeloma, sadly has very much impacted our ability to conduct clinical trials. Thankfully, now that we are out of the immediate acute phase when many trials were suspended, we actually have been able to work around this in general, where now we’ve been able to re-introduce studies and bring in new studies, of course, and we can do so in a more careful manner. Many of our clinical trials now are allowing intermittently to have telemedicine visits, which reduces the traffic for patients and makes it a little bit smoother. Some of the questionnaires and the things that we used to have to fill out on paper or physically in-person now can be done electronically, and so I think in many respects, we’ve really overcome most of the barriers so that we can continue the outstanding work and clinical trials to provide options for our patients that were not available before.

And looking to the future, I hope, even paradoxically in some way that this may — now that we’ve developed a more sophisticated telemedicine platform — it may allow us to do more and perhaps reach patients that may not have been reached before, there are already studies and trials that are being done through telemedicine, not necessarily a drug trial but quality of life studies, engagement studies, educational studies, different ways that we can enhance a patient’s experience and investigate better ways of doing things now that we can do so more fully electronically.

So, when I think of telemedicine and the future in multiple myeloma, I think it will continue to have a role in the long term. I think, much like people think that there will be more virtual meetings, I think we all want to get back to in-person meetings of various types and sizes and shapes, there will always be a component of virtual, and I can think even in my own practice and some patients that have quite a long drive to come down to see me, that they will still have to have face-to-face visits, but intermittently when the things are going well, follow-up like visits where the discussion may be limited.

I think there will be a role for this so that we can leverage the best of telemedicine and the best of in-person medicine so that the patients can receive the best care possible.

What Multiple Myeloma Populations Will Benefit From Telemedicine?

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What Multiple Myeloma Populations Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo. 

Which multiple myeloma patients will benefit most from telemedicine visits, and which patients can get more from in-person visits? Dr. Joseph Mikhael shares information on how to ensure the best myeloma care even during pandemic restrictions and how in-person visits have adjusted to limit COVID exposure risk.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

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How Will Telemedicine Impact Multiple Myeloma Clinical Trials?
 

Transcript:

Dr. Joseph Mikhael:

When it comes to making a decision around, do I need to go into the clinic or can I do this as a telemedicine visit, of course, that has to be discussed with the healthcare team, but a few things we’ve learned through this pandemic.

And perhaps one of the most important things we’ve learned through the pandemic is that controlling one’s disease, controlling one’s myeloma is critical to protecting people against COVID, sadly, many of our patients who have struggled the most with COVID are those who had very active myeloma. So, we emphasize the importance of making sure that one continues to receive the best myeloma care possible, and very often that is going to involve an in-person visit, not only for discussion, but, of course, for the actual receiving of treatment. Secondly, I think it’s very important for us to note that we really have not seen significant spread of COVID or almost any infection within our hematology-oncology clinics, we’ve taken particular precaution around this area. So, this is different than someone maybe going out to a more public place where the risks may be higher. And so, we try to reassure our patients that coming into clinic actually is really not a high-risk situation and, in fact, perhaps lower risk than ever in light of the fact that many of our waiting areas and places where we have patients have been restructured and have fewer patients because of telemedicine visits.

And then thirdly, and very importantly, whether it’s telemedicine or in-person, it’s really important to maintain open, honest, and clear communication with the healthcare team. And if that is felt that it’s being done to a certain extent in telemedicine, fantastic, but there are situations where it’s challenging and difficult and really must be face-to-face. And so I would want to encourage my patients not to be afraid to go in to receive treatment and to meet with their healthcare team. These are generally very safe places that we take special precautions to ensure their patients can receive the best care possible.

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

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Are There Any Barriers For Multiple Myeloma Patients Using Telemedicine? from Patient Empowerment Network on Vimeo. 

Along with all the benefits of multiple myeloma care via telemedicine, there are some obstacles that providers run into as well. Myeloma expert Dr. Joseph Mikhael details his experience with telehealth barriers in caring for his patients.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

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Transcript:

Dr. Joseph Mikhael:

So there are several limitations to telemedicine, despite better technology and camera strength and Wi-Fi, and we’re removing all those distractions, it really is limited by not being able to physically be present with a patient, which means we can’t examine patients, which means we can’t hug our patients, I’m a hugger as an oncologist, I like to get close to my patients, and then of course, there are those things that don’t always convey themselves easily over a camera or a computer.

The emotion in the room, the tension, the fear, many of my patients experience fear being cancer patients, and so telemedicine can be very helpful when we have more straightforward follow-ups and questions, but initially building a bond with the patient and having very considerable discussions about one’s treatment and on symptoms, it is always going to be limited in a telemedicine capacity