Multiple Myeloma Archives

Plasma cells are cells in the immune system that make antibodies, which help the body fight infection and disease. Multiple myeloma cells are abnormal plasma cells (a type of white blood cell) that build up in the bone marrow and form tumors in many bones of the body.

More resources for Multiple Myeloma from Patient Empowerment Network.

How Can We Address Noted Disparities in Multiple Myeloma?

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

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

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

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

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

What Are the Benefits of Telemedicine for Myeloma Patients?

 Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?
 

Transcript:

Dr. Joseph Mikhael:

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

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

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

 

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

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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

Related Resources:

 
Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities?

Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities?

 Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

What Are the Benefits of Telemedicine for Myeloma Patients?
 

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. 

Why Is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

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Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients? from Patient Empowerment Network on Vimeo. 

How do multiple myeloma diagnosis and treatment differ in BIPOC communities? Expert Dr. Joseph Mikhael details some statistics on BIPOC myeloma patients, factors that can impact myeloma survival rates, and myeloma clinical trial participation rates of African Americans.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 
Is MGUS More Prevalent in BIPOC Communities?

Is MGUS More Prevalent in BIPOC Communities?

 

 Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

 How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma?
 

Transcript:

Dr. Joseph Mikhael:

We know that multiple myeloma is a unique disease in the African American, in the Black community, really for many reasons, primarily the disease is twice as common in Blacks than it is in Caucasians, we don’t fully understand all of the rationale and the understanding of that, the science behind that, but we know it’s just twice as prevalent.  What’s perhaps most disturbing is that despite knowing that it is twice as common, it is often not recognized and not recognized in time. The average time to diagnosis from the onset of symptoms to an accurate diagnosis is significantly longer in the African American community than it would be in the Caucasian community, and that’s an unfortunate reality. And that along with the treatment that individuals have access to, we’ve learned, unfortunately, that African Americans are less likely to receive triplet therapies or the combinations of chemotherapy that are so important, transplant that we know is stem cell transplants are very important in the treatment of myeloma, and access to clinical trials. African Americans constitute somewhere between 17 percent to 20 percent of all myeloma patients in this country, but actually, only reflect about 5 percent to 6 percent of clinical trial participation, and all of that has led unfortunately to an inferior survival rate in African Americans compared to Caucasians.

We’ve seen huge advances in survival in myeloma over the last decade, but for every 1.3 years gained by Caucasian patients, we’ve only seen 0.8 years gained in Black patients, so this is a disparity that is disturbing and that we need to address.

The disparity in multiple myeloma is honestly, not only confined to the African American community, we see this in many other vulnerable communities, in particular, the Hispanic community, where we know that the disease is diagnosed at a younger age than we would typically see in the Caucasian community. Also reflective of the healthcare system in our country where many patients of the Hispanic background have less access to healthcare, and this clearly influences outcomes, and so as we study this more and appreciate it more, we come to understand that there are many vulnerable populations by virtue of race, by virtue of insurance status, by virtue of a documented status, all of these things, unfortunately, have a significant impact in a patient’s survival with multiple myeloma. COVID-19 has really affected so many things in the medical community. But thankfully, one of the things that we have not significantly seen, apart from for a period of time, reduced access to clinical trials, we have been able to maintain the supply of our key agents and treatments that we use in multiple myeloma. So I’m very thankful that I have not had to delay or cancel my patients’ treatments by virtue of a supply chain issue, we’re very grateful that that supply chain has pretty well been maintained after out the pandemic, and we trust will continue to be maintained.

Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities?

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Why Is Multiple Myeloma Nearly Twice As Common in BIPOC Communities? from Patient Empowerment Network on Vimeo. 

Why does multiple myeloma impact some BIPOC communities nearly twice as often compared to white Americans? Expert Dr. Joseph Mikhael shares factors that affect diagnosis and treatment of African American and Hispanic American patients — and how to improve health outcomes for BIPOC myeloma patients.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 
Is MGUS More Prevalent in BIPOC Communities?

Is MGUS More Prevalent in BIPOC Communities?

 Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

 Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

 
 

Transcript:

Dr. Joseph Mikhael:

Almost twice as common in the African American population, it’s diagnosed younger, and the African American population is actually also diagnosed younger in the Hispanic population. And then even though we tell myeloma is having this amazing survival advantage over the last decade, which is true, that advantage has not been seen in the African American population as much as we have seen in the Caucasian population, similarly not as much in the Hispanic population as well. So those are the key highlights. When people have access to those treatments, when there is that kind of equity, we actually see the outcomes, if not the same, are actually better for African American patients. So it highlights, what I often call the three T’s that are not accessed as well in the African American population, triplets, transplant, and trials. So those are some of the key things I like to say. And then when we talk about how we correct this.

I think there was a question about how are we going to do it, that could be a 20-minute answer, but it’s not just a function of having more transplants, triplets, or trials, it is really engaging the community to change this course of my alumni really is an issue of trust and of long-term strategies that engage people in a way that resonates with them, to be able to trust their institution in their hospital or their physician or within their community.

Number one, we know even from studies that we’ve done in Africa and gone on in other countries that, for reasons we don’t really understand the disease is twice as common from its early stage from MGUS right through to myeloma. It’s not an environmental factor, it’s not a later acquired phenomenon, so the baseline risk is significantly higher. But that’s secondly experiencing myeloma, having it has a lot to do with the whole experience that patients have with myeloma from diagnosis through treatment. And we know that, unfortunately, along the way, there’s a significantly longer time to diagnosis, in the African American population which has multiple reasons. Some of it is a lack of understanding, a lack of trust, a lack of education in the physician community. As part of one, the big projects that I’m working on later this year is to educate primary care doctors in primarily African American communities, so that when that man comes in with symptoms that I think of myeloma, they think of diabetes, diabetes, diabetes.

And I want them to think diabetes, diabetes, myeloma. I want it to be added to that differential diagnosis, so it’s a multi-headed beast for the diagnosis. But also as I mentioned before, access and so on all the way through, so it’s a complex problem. We do know that certain side genetic features are more common in African Americans, namely what’s called the translocation t(11;14), which with the right treatment actually can have a better outcome. So it tells us that there is a goal line that we can reach, that can actually get superior outcomes, and yet we’re now in inferior outcomes.

Is MGUS More Prevalent in BIPOC Communities?

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Is MGUS More Prevalent in BIPOC Communities? from Patient Empowerment Network on Vimeo. 

Does the multiple myeloma precursor of monoclonal gammopathy of undetermined significance (MGUS) occur more frequently in minority (BIPOC) patients? Expert Dr. Sarah Holstein from the University of Nebraska Medical Center shares information that myeloma studies are researching on Black, Indigenous, and People of Color patients and how to improve myeloma awareness and care.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 
Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

 Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

What Are the Benefits of Telemedicine for Myeloma Patients?
 

Transcript:

Dr. Sarah Holstein:

:  When we look at data sources like the SEER (The Surveillance Epidemiology, and End Results) data source, it’s not necessarily so granular that we can always distinguish whether the population is Black/Hispanic, Black/non-Hispanic, but really where I’ve seen the increased risk is whenever there are population-based studies and they describe the population at least in the U.S. as Black. I will admit I don’t know the details as to further sub-division amongst the category of Black and whether or not it’s appropriate to use the term BIPOC in this setting with respect to why do Black Americans have higher risk of plasma cell disorders than white Americans? I think that’s still a question that we can’t completely answer. There are a lot of really good research teams in this country and really worldwide that are trying to understand the different genetic-based risks, and it’s clear based on some studies that there’s some differential with respect to for example, what the frequency is of particular genetic abnormalities that happen in the plasma cells as they go from normal to abnormal. So, one example that I’ve seen is a higher frequency of translocation 11;14 in patients who are Black compared to patients who are white, but ultimately, I don’t think there’s an easy, easily understood answer to that very complex question right now with respect to why the risk is two to three-fold higher in Black individuals compared to white individuals. 

And then that’s a little bit of a separate—I mean it’s related, but in some ways, and that’s somewhat separate from the issue of when Black individuals actually get diagnosed with myeloma, whether that’s at a more advanced state of the disease than in white people that I think is a little bit more dependent on access to care as well, as knowledge of the disease. I would say that in general, myeloma is not a cancer that most Americans are actually that familiar with, and that’s regardless of white, Black, race or ethnicity, it’s still a relatively rare cancer and most people have never heard of it and don’t know other people who’ve had it. But I think what is key in the Black community is to really increase awareness of not only myeloma, but the precursor condition MGUS just like there have been enormous efforts to increase awareness of the risks of high blood pressure and diabetes, and how that can affect health later on, there’s also… I think sometimes a decreased frequency of access to primary care, sometimes myeloma is picked up just because of routine blood work, and that can be done sometimes on an annual basis by a primary care provider. And if individuals aren’t getting their annual physical and annual labs drawn, then by the time myeloma presents itself, sometimes it’s at the point where it’s presenting, because bad things have happened, like bones are breaking, or patients are very anemic, or there are serious infections, etcetera, as opposed to being found in a more asymptomatic stage when abnormalities such as high protein levels in the blood are noted that patients are otherwise feeling well. So I think you raise some really excellent questions, and I think there’s a lot of room for improvement in this country for not only improving the research so that we understand what the genetic bases are for developing plasma cell disorders, but also increasing education throughout this country, but specifically in the Black population, and then making sure that everybody has access to care.

Meet Jack Aiello: Myeloma Survivor and PEN Board Member

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In this podcast, Jack Aiello, myeloma survivor and Patient Empowerment Network (PEN) board member, shares his myeloma story. Having been diagnosed with myeloma more than 20 years ago, Jack share his perspective as an advocate and his optimism about the future of myeloma care.

About the Guest:
Jack Aiello is a multiple myeloma survivor and patient advocate. Jack is involved with a number of advocacy organizations around the country, including serving on the Board of Directors for the Patient Empowerment Network. Learn more about Jack here: https://powerfulpatients.org/2019/01/03/jack-aiello.

Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients

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Peer-to-Peer Advice for Newly Diagnosed Myeloma Patients from Patient Empowerment Network on Vimeo.

Myeloma Network Manager Honora and Myeloma patient Barry stress the importance of finding a myeloma specialist as soon as possible, finding a support group, being comfortable with your healthcare team. Remaining hopeful and positive throughout your diagnosis is key.

Transcript:

Honora Miller

I’d like to point out the importance of finding a myeloma specialist as soon as possible in your myeloma journey. There have been studies done, I can’t point to the specifics of one at this moment, there have been studies done that have shown that myeloma patients who have a myeloma specialist have a better long-term outcome. When you get a myeloma specialist, they’re dealing, they’ve dealt with hundreds, perhaps thousands of myeloma patients, and because of the complexity and variation of the myeloma with the disease, really you need to have that level of knowledge. So that would be something that I would encourage somebody newly diagnosed to find, to be referred to a myeloma specialist, possibly not as their primary provider, but as a secondary guider of the process. I do have that. So, I have a second doctor who I meet with quarterly, say, who is at a different institution who guides my myeloma treatment, and he’s a myeloma specialist and he handled my stem cell transplant. 

Barry Marcus

I think it’s very important to have a support group. Somebody who is newly diagnosed, I would counsel them to seek out a support group now it’s hard in the time of COVID, the support group that I was in, quit meeting because of it. I’m right now in the process of trying to find another one that meets virtually, and I would highly recommend that it feels good to connect with people who are going through the same things that you are, and maybe get varied perspectives on different issues around myeloma.  

I really want to emphasize how important it is to get information and to feel comfortable with your health team and the care that you’re getting and pursue that. Don’t feel like you’re worried about offending anybody, because in the first place, probably you’re not. In the second place, it’s your life. If you die, they go on to the next patient. And you’re done. 

 Honora Miller

True enough. True enough. For new patients, and I’ve talked to quite a few, having hope is something that is very important and having a positive outlook, and when you get this sudden diagnosis, it’s very scary and overwhelming. But I want to encourage people to remain hopeful, to stay positive, this is an as yet incurable cancer, but it’s being treated more and more like a chronic disease, and there’s never been a time as good as now in terms of the number of treatment options and new drugs that are coming down the pipeline, so it’s a time of great hope for myeloma, and I want to emphasize that for people because I do think that it’s important for people to hold on to that. 

Barry Marcus

I couldn’t agree more. That’s well said.

Sujata Dutta: Sharing the Journey

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Check out Part I of Sujata’s story: Normalizing the Word Cancer

 

Sujata Dutta, Part 2 Sharing the Journey from Patient Empowerment Network on Vimeo.

Empowered multiple myeloma patient, Sujata Dutta, shares an overview of her treatment from a stem-cell transplant to a clinical trial, and how she chooses to see the positives in her journey.

Transcript:

So once I was diagnosed with multiple myeloma and I was actually informed about the standard of care. So standard of care with multiple myeloma today is typically a couple of cycles of chemo. So I had about five or six cycles of chemo to bring the M-spike to as low as you can, and then that’s followed with like a stem-cell transplant (an SCT) or bone marrow transplant – both are the same. In my case, it was an autologous stem-cell transplant which meant that I use my own stem cells which were extracted and stored and then given back to me.

 So then post-transplant, if the counts look good then you go into a maintenance routine. So I didn’t have succession of chemo before the stem-cell transplant. I had my stem-cell transplant at Mayo in Rochester, Minnesota and unfortunately, in my case, we did not achieve the results that we were expecting so my disease actually did actually not come down as much as we would have hoped. 

So, I had to go back on a chemo routine and I’m on that one right now. However, I actually am part of a clinical trial. I signed up to be part of a clinical trial that’s looking for newer ways of treatment which are shortening the time of treatment and also with the goal of improving the standard of you know care or like better lifestyle for the patients and like obviously longer life.

So, I’m part of a clinical trial that’s combining Revlimid and Daratumumab, which is like usually you would have an 8-hour hospital visit for the chemo, but in this I am just getting a subcutaneous injection in my belly. It’s a 5-minute injection so that’s not pleasant, but 8 hours compared to 5 minutes, it’s great.

So yes, I am back on chemo just so that we can bring the disease under control. But typically with standard of care with multiple myeloma is like couple cycles of chemo followed by a transplant. If you are eligible for one, and if you are ready for one, and then followed by maintenance. So that’s typically what happens with multiple myeloma.

But there are loads of other treatments that are coming up and researches that are happening, clinical trials that are happening, I would highly encourage it if you come across a clinical trial that interests you, speak to your doctors and see what they say. And if you’re eligible, it would be a great thing to do. I personally wanted to get involved in some kind of volunteering activity. I know that folks before me have done so much and I’m benefiting from that, I wanted to give back as well so I actually signed up for the trial. But other than that, that’s pretty much what the standard of care is today for multiple myeloma or what I know of.

I think one of the biggest takeaways from my cancer journey, I would say is learning to be appreciative of what I have. Learning the value of what I have, not that I did not know that, but I think this life changing kind of event that has happened has taught me even more of the value. For myself, what’s my worth? What’s the worth of somebody else in my life? What’s the worth of things around me in my life? And it has, so my journey has actually helped me understand these things and be appreciative of what I have. 

My husband he’s been my primary caregiver throughout this journey and we have actually like been on the journey together, so it has been an amazing journey I would say. 

We have discovered like a new relationship between us, like going for chemo, going to Mayo for 6 weeks, and we stay together and you know how much I appreciate what he has had to go through because of me. Like looking at me not being able to walk or not even being able to talk or even drink water because of the amounts of … that I had and supporting me through all of that. I really appreciated it. I appreciated my boys, like I have a 7th and a 6th grader, and for them to understand what I was going through and for them to be able to accept in the form that I was, has been great.

I have friends, I have family who have supported me throughout this so I really appreciate them being with me, being around me, supporting me, rooting for me, praying. There’s one thing that I tell everybody like you know there have been so many people known and unknown that have like you know helped me or prayed for me or rooted for me that I have no choice but to get better.

So you know I really appreciate what I have and I think I also appreciate the value of what I have, and like not think about what I don’t have. I am a believer that divine intervention happens, you don’t know why but everything has a reason and I think whatever happens, happens for the best. For even cancer, I think happens for the best.

For me to understand like what all I had and like how grateful I was for everything that I had. For me to go back to a hobby that I had almost forgotten. I paint, I used to paint and I’d almost given up on that through my journey. I was like I need to go back and do something else and I went back to painting. So like so many good things have come out of this, so you know I’m really grateful for whatever has happened and I’m quite positive for the future so I am looking forward to what’s in store for the future and I’m going to be positive keeping my fingers crossed. That’s my story for you.

Tips for Myeloma Patients Deciphering Between In-Person or a Telemedicine Visit

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Download Guide

Tips for Myeloma Patients Deciphering Between In-Person or a Telemedicine Visit

Download Guide

See More from The Myeloma TelemEDucation Empowerment Resource Center

Telemedicine Visit Preparation Tips From Myeloma Patients to Myeloma Patients

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Telemedicine Visit Preparation Tips From Myeloma Patients to Myeloma Patients from Patient Empowerment Network on Vimeo.

With the pandemic altering our conventional communication methods, how can myeloma patients be prepared for upcoming telehealth appointments? Myeloma patients Barry Marcus and Honora Miller share their top tips for being as prepared as possible for a telemedicine visit.

See More From the Myeloma TelemEDucation Resource Center

Transcript:

Barry Marcus:

One of the virtues of it is that you can seek opinions from a wide geographic area, you don’t have to travel, some opinions that you might want to get could be thousands of miles away, and I didn’t feel when I had a telemedicine visit that was really much different than an in-person visit, we talked about the same things we would have had we been face-to-face, and I was very happy with it.

Honora Miller:

I’ve had quite a few telemedicine visits since the beginning of COVID, almost the entirety of my myeloma specialist visits have been via telemedicine. And I don’t have to drive an hour and a half to get there. My doctor is on time. We have the same conversation we would have had in person, and it’s very efficient, I come with my list, and it’s very efficient. I do see my local oncologist via in-person every other month so that they can lay their hands on me, and that seems to be sufficient, but every other month, just before my infusion, I’ll have a telemedicine visit with the oncologist and that’ll be sufficient and it’s cut down on a lot of anxiety around COVID.

Barry Marcus:

I would definitely recommend having, as you mentioned, a list of questions before you initiate the meeting, and think about what you really want to get from the meeting, and then review your list maybe towards the end and make sure that you have gone over the things that you wanted to talk about.

Honora Miller:

Agreed, I feel that it helps focus the conversation, and then you just know you’ve covered everything that’s concerned to you.

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

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The Patient Empowerment Network (PEN) is fostering change toward achieving equitable healthcare for all. One resource, the Myeloma TelemEDucation Empowerment Resource Center is to significantly improve multiple myeloma patients’ and caregivers’ familiarity with remote access to healthcare, and thus increase quality of care regardless of geographical location. This one-of-a-kind resource center is intended to educate the myeloma community on the practical usage of telemedicine tools, to humanize patient and provider experiences.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to myeloma patients and to aid in receiving optimal care no matter virus limitations, where patients live, and other factors.

Benefits and Limitations of Telemedicine Visits

There are both benefits and limitations of telemedicine visits. Some benefits of telehealth include:

  • Telemedicine allows care providers the opportunity to determine when myeloma patients really need to be seen in-person.
  • Standard of care and maintenance treatment are usually a good fit for using some telemedicine visits in clinical trials.
  • The option to get laboratory work done closer to home is a benefit for saving travel time and from taking time off of work and also lessens patient exposure to viruses.
  • Telehealth allows care providers the opportunity to meet family members of some patients who can’t make it to in-person visits and to get to know their patients on a more personal level.
  • Care providers are now able to provide second opinions to patients in other parts of their state and even to some patients across the country.

Unfortunately, some limitations of telehealth include:

  • Gauging toxicity and other things with new treatments are usually best done along with performing a physical exam.
  • Some patients only have technology access to talk over the phone and don’t have access to use video due to their device or due to lack of Wi-Fi bandwidth.
  • Physical examinations cannot be performed via telehealth visits.
  • Some providers feel it’s more difficult to establish a bond with some patients and to have considerable discussions with then over telemedicine.
  • Open and honest communication between patients and care providers is sometimes better served in-person.

How to Optimize a Telemedicine Visit

 Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits are:

  • Try to write down your questions for your doctor or care provider before your appointment to keep on track. Keep it next to you for easy access during your visit.
  • If patients normally have a friend or loved one join or doctors have a nurse or pharmacist join for in-person visits, have them join your telemedicine visits to help take notes, to ask questions, and/or to provide answers or additional information.
  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time to prevent rushing before your appointment. If possible, try to test the video conferencing tool with a friend or loved one a day or so ahead of your appointment.
  • If there’s anything you don’t understand during the appointment, ask your doctor to explain it again – whether it’s medication instructions, test results, a new medical term, or anything else.
  • If you feel like a treatment isn’t working well for you, ask your doctor about possible medication or dosage changes.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late. Try your best to remain flexible and to be patient.

Telemedicine and Multiple Myeloma Clinical Trials

To the surprise of some, telemedicine has taken a role in multiple myeloma clinical trials. Currently, and looking to the future, patients can expect:

  • Telemedicine to continue as an option for follow-up visits along with in-person visits in clinical trials.
  • Paperwork for clinical trials to be available to complete online for an easier process for joining clinical trials.
  • Multiple myeloma clinical trials to provide optimal care through the use of both telemedicine and in-person visits.
  • Telemedicine to provide more options for clinical trial access for those who live in remote areas.
  • Multiple myeloma clinical trials for quality-of-life studies, engagement studies, educational studies, and possibly others to be available via telemedicine. 

Financial Benefits of Telemedicine 

Telemedicine has brought some financial benefits for multiple myeloma patients, including:

  • Telemedicine saves the time and costs of traveling to appointments and can reduce or sometimes eliminate the need to take time off from work for an appointment.
  • The option of connecting with your doctor via telemedicine can sometimes eliminate the need for costly urgent care visits.
  • The use of telemedicine eliminates the need to find child care for patients and care partners with young children who couldn’t take them along to in-person doctor appointments.

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools continue to increase in use and to be refined, multiple myeloma patients can feel hopeful about improved care and treatment ahead for patients. As a step in that direction, take advantage of the resources below and continue to visit the Myeloma TelemEDucation Empowerment Resource Center for informative content about multiple myeloma and telemedicine.

Resources for Telemedicine and Multiple Myeloma

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials?

Is Telemedicine Here to Stay for Multiple Myeloma Care?

 What Are the Benefits of Telemedicine for Myeloma Patients?

How to Make the Most of a Virtual Visit

Telemedicine & Second Opinion Options

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

Financial Resources for Patients and Families

 Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

 Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

Is the COVID-19 Vaccine Safe for Myeloma Patients?

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Is the COVID-19 Vaccine Safe for Myeloma Patients? from Patient Empowerment Network on Vimeo.

 Should myeloma patients get the COVID-19 Vaccine? Dr. Joshua Richter encourages all patients to get the vaccine but notes important considerations around treatment.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma

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Myeloma Treatment Decisions: What Should Be Considered?

What Standard Testing Follows a Myeloma Diagnosis?

An Expert’s Take on Promising Myeloma Treatment and Research

Transcript:

Katherine:

Is the COVID-19 vaccine safe for patients with myeloma?

Dr. Richter:

Absolutely, 100 percent yes. Everybody with myeloma should absolutely get the vaccine. What’s a little more complicated is the timing of it. So, one is in relation to stem cell transplant or CAR T-cell therapy. If you’ve had one of these, obviously, consult with your provider. But the general recommendation is to wait about 60 to 90 days after a high-dose therapy like that. And it’s not a question of safety, it’s a question of efficacy. Vaccines are like vegetables, seeds, you have to put them in the ground to grow. If you give yourself a vaccine right after a stem cell transplant, well, your bone marrow is not ready to work with it. It’s like planting a seed in the desert.

You want to make sure your immune system can take in that vaccine and give you immunity. So, you have to wait at least 60 to 90 days. The other question is, what happens if you’re getting continual therapy? And we don’t know the answer for most of these drugs, but one of the things is dexamethasone (Decadron), which is a steroid. Almost all myeloma therapy comes with some steroids. And we like to separate the vaccine from the steroid dose by a little bit if we can. Again, always important to talk with your care team as to risk/benefit about holding certain treatments.

An Expert’s Take on Promising Myeloma Treatment and Research

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An Expert’s Take on Promising Myeloma Treatment and Research from Patient Empowerment Network on Vimeo.

 Myeloma research is advancing quickly. Dr. Joshua Richter, a myeloma expert, shares his excitement about emerging treatments in development.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma

Related Programs:

Myeloma Treatment Decisions: What Should Be Considered?

Myeloma Treatment: When Should a Clinical Trial Be Considered?

What Standard Testing Follows a Myeloma Diagnosis?

Transcript:

Katherine:

When it comes to myeloma research and emerging treatment options, what are you most excited about, specifically?

Dr. Richter:

So, I think the big thing that I’m excited about from myeloma that we’re on the cusp of is T-cell engagers and T-cell based therapies. And, essentially, we all have T cells in our body, and T cells are a part of our immune system. They attack bacteria, viruses, and cancer.

And one of the best cancer fighters that exists is our own immune system. And the old way of treating cancer and blood cancers like myeloma was just to give medicines that suppressed all of the immune system, the good and the bad. Now, we’re trying to be more precise, and there’s certain parts of the immune system that we don’t want down, we want up. So, they help attack the cancer.

And the two biggest technologies are something called CAR T and something called bispecific antibodies. CAR T stands for chimeric antigen receptor T cells.

And, basically, what that is is we collect your T cells, we engineer them in the lab to rev them up and target the cancer. And we can put them back into you and they attack the cancer, very exciting. And then we have something called a bispecific antibody that has two arms. And as we infuse this medicine into you, one arm grabs onto the cancer cell, the other arm grabs onto your T cell and makes that T cell activate and attack the cancer cell.

And a lot of these drugs are in clinical trials as well. So, we’re very excited about moving from, you know, just lowering everything, the good and the bad, to being more precise and saying, no, no, no. There are some cells that we want way, way up.

Katherine:

Right. Right. So, you’re – you’re being much more specific now.

Dr. Richter:

Mm-hmm.

Myeloma Treatment: When Should a Clinical Trial Be Considered?

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Myeloma Treatment: When Should a Clinical Trial Be Considered? from Patient Empowerment Network on Vimeo.

 At what point should a clinical trial be an option for myeloma treatment? Dr. Joshua Richter shares his perspective on the appropriate time to weigh clinical trial participation and the potential benefits.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma

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Myeloma Treatment Decisions: What Should Be Considered?

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Is the COVID-19 Vaccine Safe for Myeloma Patients?

Transcript:

Katherine:

When should a clinical trial be considered for myeloma treatment?

Dr. Richter:

So, clinical trials are an extremely important component of how we manage myeloma. And I think there are a lot of myths and misconceptions about trials. Trials are not always things to do after everything else failed. From my standpoint, at every point along the way, we should always consider clinical trials, because they offer something really amazing. They offer us access to drugs way before they’re approved.

And the benefit of not waiting until the end, after you’ve been through everything else, is two-fold. One, in order to get on a trial, you need to fit certain criteria, inclusion, and exclusion criteria. You need to have myeloma, but you can’t be so sick from other medical problems that you’re not going to tolerate that treatment well. As such, unfortunately, some patients after they’ve been through all the other therapies may not qualify for a clinical trial, and that can be really upsetting.

The other benefit of doing a clinical trial early on is if you go on a new drug and it doesn’t work, you have all of the other standard of care options available at a moment’s notice. But if it does work and you gain access to a drug way before it’s approved, and it happens to work extremely well in you, you can have an unbelievably long remission and still have all of the drugs that are available. And, potentially, in that time on the drug, new standard of care drugs are approved. It even deepens the well that you can reach into to grab more options. So, at all times along the way, it’s always important to weigh the risks and benefits of what we call standard of care treatment versus clinical trial options.

Which Myeloma Patients Should Consider Stem Cell Transplant?

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Which Myeloma Patients Should Consider Stem Cell Transplant? from Patient Empowerment Network on Vimeo.

 Which myeloma patient is stem cell transplant most appropriate for? Dr. Joshua Richter reviews the factors that go into the decision, as well as the risks and benefits of this treatment approach.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma

Related Programs:

Myeloma Treatment Decisions: What Should Be Considered?

Myeloma Treatment: When Should a Clinical Trial Be Considered?

Is the COVID-19 Vaccine Safe for Myeloma Patients?

Transcript:

How do you determine if stem cell transplant is appropriate?Katherine:

Dr. Richter:

So, stem cell transplant has been a key component for the treatment of myeloma for many patients for decades.

It’s a tool; it is not the only tool. So, it’s a very complex decision deciding who should receive a transplant and who should not. Outside of the U.S., there are very strict guidelines. In many places in the world, over the age of 65, you do not receive a transplant outside of being involved in a clinical trial.

In the U.S., there is no age restriction. But it’s an ongoing discussion between the patient and their care team about the risks and benefits. The older you are and/or the other comorbidities you have, other medical problems, may make it too risky to do. There are some people that we can control their disease for extremely long times without the need for transplant. One of the things that weighs into it is how well did you respond to your first therapy. We have some emerging data that if you have such a great response to your initial treatment that you have no measurable disease at all even in the bone marrow, you may not even need a transplant.

So, the decision of who needs it and who doesn’t is evolving. From my standpoint, I consider it for any person who is healthy enough to go through it and who has a clear understanding of the risks and benefits.

I’m a strong proponent of it, but because there are such great new drugs, it’s a moving target.