What Standard Testing Follows a Myeloma Diagnosis?

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What Standard Testing Follows a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo. 

What tests will you have following a myeloma diagnosis? Are there additional tests you should request? Dr. Joshua Richter provides an overview of key testing for myeloma and why each test is necessary.

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.

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Transcript:

Katherine:

What standard testing follows a myeloma diagnosis?

Dr. Richter:

So, the standard testing that follows a myeloma diagnosis is multifaceted. So, the first one is blood work. And we draw a lot of blood tests to look at the bad protein that the cancer cells make. So, we send tests like a protein electrophoresis which tells us how high that bad protein is. We send immunofixation. That test tells us what type of bad protein it is. You’ll hear names like IgG kappa and IgA lambda.

These are the different types of bad proteins made by myeloma cells. Oftentimes, we’ll send urine tests to find out how much of that bad protein that was in the blood is coming out in the urine. We will, typically, do a bone marrow biopsy. It’s a test where we put a needle into the back of the hip bone to look at the marrow itself. And we’ll use that marrow to figure out how much myeloma there is, any other characteristics like the genetic changes in those cells.

The other big thing is imaging. So, the classic imaging that we do with myeloma is something called a skeletal survey. It’s, basically, a listing of X-rays from head to toe. But nowadays, we have newer techniques, things like whole body low-dose CAT scans, something called a PET-CT scan, and MRI scans. And your care team may have to figure out which one is right for you at what given time.

Katherine:

Mm-hmm. Are there additional tests that patients should ask for?

Dr. Richter:

Absolutely. One of the most important things from myeloma has to do with the genetic risk stratification.

So, for almost all cancers, the staging has a very big impact. And people will often think of cancer in stages I, II, III, and IV, and they’re managed very differently depending upon what stage it is. Myeloma has three stages, stage I, II, and III. But the most important thing is, actually, beyond the staging is what’s called the cytogenetics risk stratification. So, it’s really important when the bone marrow is sent to be sure that it is sent for, kind of, advanced techniques. Because you really want that snapshot of exactly what the genetic profile is, because that gives us information of A) how to treat, and B) prognostic, you know, who will tend to do better or worse based on this information. And even though that may not tell us which drugs to use, specifically, it may say, should we do something like a transplant or not? Should we consider a clinical trial early or not?

Katherine:

I see. How do test results affect treatment choices?

Dr. Richter:

So, test results can affect treatment choices in a number of ways. Probably, the most common one is thinking about the routine blood tests like your CBC or complete blood count and your chemistry, which looks at things like your kidney function. Some drugs tend to have more toxicity to the blood counts. So, if your blood counts are very low, we may choose drugs that don’t lower the blood counts very much.

Kidney function which we, usually, measure by something called the creatinine. Creatinine is made by the muscles and cleared out by the kidneys. So, if your kidneys aren’t working very well, you don’t pee out creatinine, and that creatinine level will rise in the blood. If your creatinine level is high, we may choose certain drugs that don’t affect the kidneys or not metabolized or broken down by the kidneys.

The genetic studies that we use – we’re not quite at this base yet where we can say, if you have this genetic abnormality in your myeloma, we should use this drug except there’s some really great data on the cutting edge about a drug called venetoclax.

Venetoclax is a pill that’s used to treat other diseases like lymphoma and leukemia. And it turns out that people who have what’s called a translocation (11:14) which means part of the 11th chromosome and part of the 14th chromosome in the cancer cells swap material.

Those people respond amazingly well to venetoclax. So, we’re starting to have what we would call precision medicine where we find your genetic abnormalities, not that you got from your parents or passed to your kids, but the genetics inside the tumor cells to tell us which treatments will work best for you.

What You Need to Know Before Choosing a Cancer Treatment

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What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.

If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.

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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 

This program is supported by Blueprint Medicines, and through generous donations from people like you.

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.

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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.

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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.

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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

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

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What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine? from Patient Empowerment Network on Vimeo.

What are some ways that patients and providers can make the most of multiple myeloma telemedicine visits? Dr. Joseph Mikhael shares things that he has found helpful in interacting via telehealth visits with his patients and how he tries to approach different types of visits.

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Transcript:

Dr. Joseph Mikhael:

Well, the best practices for telemedicine are really going to depend on the nature of the clinic, the way the provider likes to interact with their patients, and the way the patients like to interact with them. I think one of the beauties of the multiple platforms we have is that we can leverage them, that beautiful connection that we develop between a physician or a provider and their patient, we can continue obviously not to the same extent that using electronic means, and so I’ve really tried to make sure that I don’t look at this as a half visit or as a partial visit.

I think psychologically is my first important tip that we look at this as another very important physician-patient interaction. Secondly, I try to make sure that my patients are comfortable with this modality, that we’ve had time to work through the technology, so we’re not worrying about who’s on mute, who’s not on mute, so that when we discuss things, we can discuss things properly, and that thirdly, we as much as possible, try to engage a full visit, whether a family member is going to be with the patient, whether a nurse practitioner, a nurse or pharmacist is going to join me on this side, that we really try to reproduce what we know works well in the clinic.

So, that the patient can feel comfortable so that they can be heard, because sometimes it’s difficult when you’re on the other side of a computer or phone to really be heard.

So psychologically, being prepared for this and getting into the specifics of making sure we’re comfortable with the technology, and then thirdly, really as much as possible, trying to reproduce that magic that we feel like when we have a face-to-face interaction.

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

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Will Telemedicine Be An Advantage for Multiple Myeloma Patients? from Patient Empowerment Network on Vimeo. 

With the rise of telemedicine into multiple myeloma care options, unforeseen benefits have occurred along with those that are well-documented. Dr. Joseph Mikhael shares what he’s experienced in caring for his patients.

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Transcript:

Dr. Joseph Mikhael:

The pandemic, both in the short term and the long term has really revolutionized much of what we’re doing in medicine, telemedicine is one of those areas. It’s, despite all the challenges that we faced of social isolation, it really has given us an opportunity to not only see patients who we may not have already seen but also allow us to develop a relationship with patients where we can determine when is it best and needed truly to be seen in-person. And when can we do visits by telemedicine, allowing the patient to have less travel time and the challenges of coming to the clinic and allowing us to keep our clinics limited to those patients that genuinely need to be seen face-to-face. So it’s really now been a wonderful adjunct to the way we care for patients, doing so continuously in a human fashion, but also leveraging the technology and that we can use for this.

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

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Are There Limitations of Telemedicine for Multiple Myeloma Patients from Patient Empowerment Network on Vimeo.

What have some multiple myeloma patients seen in terms of limitations of telemedicine? Myeloma expert Dr. Sarah Holstein details some obstacles some of her patients have gone through – and share some benefits that she’s experienced with her patients. 

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Transcript:

Dr. Sarah Holstein

So, I’ve actually found that there’s very few limitations. One of course is access to the appropriate technology to be able to do telemedicine, so there are a few patients that I really just need to do telephone visits with, and I think those are a little bit more difficult there’s just something about being able to see somebody on the screen that you kind of get an immediate sense for how they’re doing, and that’s a bit lost when it’s just via telephone. So, for those patients who either because of not having fast enough Wi-Fi service based on where they live, or just not having the access to the technology, video cameras, phones with videos in them, that can be a restriction.

But otherwise, I think this has been a really good thing for my patients, and it’s given me a glimpse into their home life, I can’t tell you how many times I’ve had dogs or cats wander into the telehealth appointment, and usually we stop to talk about those dogs or cats, and it’s just a way to really get to know my patients a little bit better, it’s allowed me to see more family members because many times, not all the family members would be able to come for an in-person visit, but now they’re at home and so it’s given me more insight into how my patients live.

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

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Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients? from Patient Empowerment Network on Vimeo. 

With the entry of telemedicine into the multiple myeloma care toolkit, there are some real benefits to the cost of care visits. Dr. Sarah Holstein outlines some of the financial benefits that she’s seen for her patients – and how the logistics of scheduling appointments has changed.

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Transcript:

Dr. Sarah Holstein

So, there’s definitely quite a bit of financial toxicity associated with being a patient who has myeloma. There of course is the cost of the drugs and treatments themselves, but there’s also the personal time cost. So, the cost that it takes to perhaps take a half day off of work or a full day of work to see your provider in person, and the flexibility that telemedicine allows, namely being able to do your appointment from either the privacy of your own home or in some cases the privacy of your own office or even your own car, really allows patients to keep going about their business without having to take all that time off to come travel. There’s the cost associated with gas mileage in some cases, costs associated with parking, although thankfully, that’s not a cost that’s occurred here at Nebraska Medicine. But I certainly know that that can be an issue at other institutions and can really add up for patients over time. So, it’s really been so much easier for patients to get in to see me even when my schedule is fairly full, because they don’t have to think about, “Well, I don’t need to leave work an hour, try to go over my lunch break,” or something like that, they can just schedule it and do it from their office.

I think it’s been a good thing for patients and hopefully is cutting down costs for them.

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

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How Can Myeloma Patients Reduce Infection Risks During medical appointments from Patient Empowerment Network on Vimeo. 

How much of a risk are medical appointments for multiple myeloma patients? Myeloma expert Dr. Sarah Holstein explains infection risks of infusion appointments versus clinic visits – and shares how she’s helped to ensure safe visits for her patients.

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Transcript:

Dr. Sarah Holstein

So, I think the risk associated with going in to get your blood drawn is probably quite low. All health care providers are going to be masked. The time that is spent getting the blood actually drawn is quite low and generally are in and out. So, for what I’ve tried to do for patients is of course to minimize unnecessary lab draws and if possible, try to coordinate them with other tests that are being done that day or other visits that are being done that day, and the infusion appointments, of course are necessary. But again, I think the risk of going to an infusion appointment is quite low, where I think the risk gets a little bit higher is when you’re sitting in waiting rooms of clinics and some people are slipping their masks off to drink coffee or to do other things, like that. And so, on my end, what I’ve tried to do to reduce risk is to utilize telehealth appointments as much as possible so that patients aren’t spending time in waiting rooms, but again, some of the necessary evils are just that you have to get some labs drawn to make sure that it’s safe to administer chemotherapy to make sure that the treatment is working, and you also have to go to infusion appointments.

I will say I’m pretty strict about masking, so if I have a patient perhaps come in for an in-person visit and it’s the type of mask where it’s slipping off of their face as they’re talking, and we’ve all experienced those types of masks that fit fine until you actually start talking. I’ll get a replacement mask for them to really make sure that everybody, the healthcare providers, the team as well as the patient, and if there’s a family member with them or a safest can be, and that includes wearing a properly-fitting mask.

How Will the Pandemic Impact Multiple Myeloma Trials?

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How Will the Pandemic Impact Multiple Myeloma Trials? from Patient Empowerment Network on Vimeo. 

How has the COVID-19 pandemic changed multiple myeloma clinical trials, and how can telemedicine play a role in trials? Dr. Sarah Holstein shares her perspective on how trials were altered and her suggestions for improvements in trials.

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Transcript:

Dr. Sarah Holstein

Early on, I was very concerned about the ability to conduct clinical trials during the pandemic, early on, at least in our institution, and I know that there were many others across the country, there was a lot of concern about really limiting what was considered by the IRB (Institutional Review Board) to be an essential contact. They perhaps placed an emphasis on later phase clinical trials and thought that the earlier phase clinical trials weren’t necessarily proving to be a benefit for patients and therefore shouldn’t be opened, and I would have to say that that was not what my thought was. I really think that all clinical trials, whether it’s a Phase I, Phase II, or Phase III or of utmost importance to our patients and are important for their care. So again, early on, I was very concerned about limiting the access of clinical trials to patients. As the pandemic has continued and it’s become clear that this is going to be life as we know it for unfortunately, quite some time, I know at our institution, we’ve really tried to be as safe as possible, but all clinical trials are open and we’re allowed to enroll, I think there still is room for improvement with respect to how telemedicine is incorporated into clinical trials, and whether or not we can do things like allowing patients to get their study labs drawn closer to home as opposed to traveling to the academic center, so I think there continues to be room for improvement for really trying to minimize the amount of traveling that people do, and therefore the amount of potential exposure that patients have.

We still are not routinely using telemedicine for the clinical trial visits, that most of those are still in person. And I think depending on the specific trial, that is probably appropriate if you have a new agent and a lot of what you’re looking for is evidence of toxicity, I think it is important to be able to evaluate the patients in person and really be able to conduct a normal physical exam, having said that though, if a patient’s on a clinical trial where they’re receiving more standard of care, and perhaps it’s in a maintenance phase of a study, I think being able to utilize telehealth for some of those more routine visits would really be beneficial for both the patients and the healthcare team.

Is Telemedicine Here to Stay for Multiple Myeloma Care?

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Is Telemedicine Here to Stay for Multiple Myeloma Care? from Patient Empowerment Network on Vimeo.

With the emergence of telemedicine for multiple myeloma care, it’s being looked at for long-term care. Myeloma expert Dr. Sarah Holstein shares her hopes for the future of telemedicine – and shares some tips for optimizing telehealth visits.

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Transcript:

Dr. Sarah Holstein

I really hope telemedicine is here to stay. If you’re practicing in a place like I am, where patients come from quite a distance, it would be great in the future if some of the more routine visits, can be a telemedicine and perhaps get into a rotation or maybe every three or four months, they come and see me in person versus the rest of their monthly visits via telemedicine. So, I very much hope that the government, as well as insurance carriers will continue to provide coverage for telehealth visits in the future, because I think it’s really broadened access for patients and it’s been a really wonderful thing for them in general. In terms of tips for preparing, some of it just comes down to understanding the technology and getting familiar with what you need to click on and making sure that you’ve allowed your iPad or your phone or computer access to your camera, it sounds silly, but sometimes a big chunk of the appointment can be eaten away because of the settings being wrong or pop-ups, so some of it is just trying to figure out the system ahead of time before you log on.

But other than that, I would say, making sure that you understand from your health care team, whether or not you can forward the link, if you’re using Zoom, for example, to other family members, so that you

can have multiple family members kind of Zoom in at the same time to be able to listen, and that way you’re not relying on yourself to take notes, and everybody doesn’t have to be in the same place at the same time, which again, given the pandemic is not wise anyways. So, I think just trying to figure out the technology involved and then making sure that you can have access or provide access to your family members or friends who want to virtually come to your visit with you is key for a successful visit.

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

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Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients? from Patient Empowerment Network on Vimeo. 

What can multiple myeloma patients expect for the use of telemedicine as part of their long-term care? Dr. Sarah Holstein shares her experience of using telemedicine for those with MGUS and those managing controlled disease – and her thoughts about the future of telemedicine.

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Are There Limitations of Telemedicine for Multiple Myeloma Patients?

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

What Are the Benefits of Telemedicine for Myeloma Patients?
 

Transcript:

Dr. Sarah Holstein

So, I think telemedicine is a really good fit for patients for either long-term survivorship issues or for patients that perhaps you’re just following with the precursor to myeloma, so for example, MGUS (monoclonal gammopathy of undetermined significance) where overall the risk is low that there’s actually going be a progression to myeloma over their lifetime.

So I have a number of patients who I see perhaps on an annual basis for those types of visits, and of course, over the last year, I’ve been doing a number of those visits via telehealth, and I think they’ve gone really well. It still allows me to ask my entire review of systems where I check through and make sure that there’s no subtle signs that I might be missing that somebody’s plasma cell disorder is progressing. They’ve had their blood work or scans or other testing done, and we can review those, but again, in those types of situations where the risk is low and somebody is doing well and it’s a fairly routine visit, I think the need to do a full physical exam, it’s pretty low, I think whether or not you’d hear anything on the lung exam in somebody who’s doing well and it’s just there for an annual basis exam, I don’t think that lung exam is going to add a whole lot, but really having the ability to still talk to each other, go over laboratory studies, really make sure that I’m not missing any subtle signs that might suggest concomitant lite amyloidosis or progression to myeloma can still very readily be done via telehealth.

What Are the Benefits of Telemedicine for Myeloma Patients?

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What Are the Benefits of Telemedicine for Myeloma Patients? from Patient Empowerment Network on Vimeo. 

How will myeloma patients benefit from telehealth visits? Myeloma expert Dr. Sarah Holstein shares benefits she has seen while caring for her myeloma patients including broadening access and the ease of seeking a second opinion.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Is Telemedicine Here to Stay for Multiple Myeloma Care?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials? 
 

Transcript:

Dr. Sarah Holstein

So, I think telemedicine has been one of the few silver linings of this entire pandemic, I had personally never utilized telemedicine previously in my career, and now I’m using it almost extensively these days to care for my myeloma patients.

I’ve always had patients who tell me that they wish they didn’t have to take a half day off to come to a clinic appointment, and sometimes the clinic appointments are only 20 minutes, but they’re driving an hour and a half or two hours or more to come to those clinic appointments. So, some of it has just been the freedom that allows patients to go about their lives and not have to take time off of work or time off from other things that they’re doing to physically travel to come and see me. Telemedicine though, has also really broadened the access to me in my cancer center, again, based on where I’m at in Nebraska, patients would sometimes have to travel a very far distance to see me, and these days it’s just a matter of logging on via Zoom to access me, and it’s allowed me to see patients for second opinions in not only different parts in Nebraska that otherwise would have been difficult to reach, but also really across the country.

So, telemedicine in general, has allowed patients much more flexibility in seeing me and has also allowed the ability for me to do second opinions without making patients travel quite a distance.

How Can Myeloma Patients Advocate for the Best Care?

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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.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

Myeloma Treatment Decisions: What’s Right for You Resource Guide

 What Should You Know About Myeloma Treatment Options?

What Should You Know About Myeloma Treatment Options?

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.