Tag Archive for: multiple myeloma

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?

AML Research Updates: News from ASH 2020

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AML expert Dr. Jeffrey Lancet shares news from the 2020 American Society of Hematology (ASH) annual meeting. Dr. Lancet sheds light on headlines from the meeting including FLT3 inhibitor research, combination therapies with venetoclax, a promising inhibitor therapy, and shares his optimism about the future of AML treatment.

About the Guest:
Dr. Jeffrey Lancet is Chair and Program Lead in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. He is nationally and internationally recognized for his clinical research in the field of acute leukemias. Learn more about Dr. Lancet, here.

See More From INSIST! AML

Transcript

Katherine:

Hello and welcome, I’m Katherine Banwell. Today we’ll discuss the latest news from ASH 2020 and how AML patients can advocate for personalized care. Joining me is Dr. Jeffrey Lancet. Welcome, would you please introduce yourself?

Dr. Lancet:

Hi, sure. My name is Dr. Jeff Lancet. I’m at the Moffitt Cancer Center in Tampa, Florida where I am the Chair of the Malignant Hematology Department. We spend a lot of time treating patients and conducting clinical trials of Acute Myeloid Leukemia.

Katherine:

Dr. Lancet, the American Society of Hematology annual meeting just closed. What are the AML headlines from this year’s meeting?

Dr. Lancet:

Yeah, so as usual AML was a very busy area for clinical presentations this year at the ASH meeting focusing largely on novel and targeted therapies. I don’t believe that there were many practice changing delevelopments, per se, but rather discussions about many promising therapeutic strategies that are still under development and moving forward rapidly largely in the areas of targeted therapy, low intensity therapy, measurable residual disease, and things of that nature.

Katherine:

What does this research news mean for patients?

Dr. Lancet:

Well, I think that there is a lot to be encouraged about and maybe I’ll take the time to review some of the highlights in what was presented with respect to some of the novel therapeutic approaches that many of our patients can look forward to receiving in the not-too-distant future.

So we often talk about targeted therapy instead of, of course, one of the major targets over the years has been that of a mutated FLT3, which is one of the most common mutations in AML.

And at this meeting, we saw several presentations on clinical trials results utilizing Inhibitors of FLT3 with some emphasis on the most recently approved 2nd generation drug called gilteritinib.

There were, I thought, three major presentations focusing on gilteritinib. One was an update on a randomized phase 3 trial comparing gilteritinib plus azacitidine versus azacitidine alone in newly diagnosed unfit for induction chemotherapy patients with FLT3 mutations. Preliminary showing good tolerability and high composite complete response rates in the combination arm. 

There was another trial of gilteritinib plus venetoclax in relapsed refractory FLT3 mutated AML and what was interesting was that a very high percentage of patients achieved response with this combination of gilteritinib plus venetoclax. Many of whom were heavily pre-treated previously and many of whom had also got prior FLT3 inhibitor therapy during an earlier stage of the disease, so the combination of gilteritinib plus venetoclax in this more refractory setting was encouraging to see these promising responses.

And then we say some data reporting the effects of gilteritinib in combination with more traditional chemotherapy induction with a couple of studies demonstrating both high complete response rates, as well as high rates of mutation clearance of the FLT3 mutation. So those are very encouraging data that were presented with respect to the FLT3 mutated AML population. 

So another very important drug that reached the marketplace for AML recently is a drug called venetoclax, which is an inhibitor of a protein called BCL2. And this drug was recently FDA approved for use in combination with low-intensity chemotherapy drugs such as azacitidine or decitabine. And it seems as though the combination of venetoclax plus one of these hypomethylating agent drugs, azacitidine or decitabine, has resulted in very strong efficacy signals as recently published in the New England Journal of Medicine paper that reported on the results of the Phase 3 trial of venetoclax plus azacitidine.

So that has now become standard of care for older, less fit adults with newly diagnosed AML. The combination of venetoclax plus hypomethylating agent such as azacitidine. And naturally there’s been interest in really kind of taking it several steps further to advance the role of these combinations and to also look at additional drugs in combination with venetoclax plus hypomethylating agent therapy. So, we saw some of that at the ASH meeting this year.

One approach would be to take venetoclax and then to combine it with more intensive chemotherapy for perhaps more fit patients or younger patients that could undergo a more intensive program. So we saw presentations of venetoclax being combined with a drug called CPX-351 which is a novel liposomal formulation of two common chemotherapy drugs that had been approved a few years ago for secondary AML. And we also saw a combination strategy with venetoclax and a regimen known as FLAG-IDA, which is a commonly used induction regimen in Acute Myeloid Leukemia.

I think it’s important to recognize that although these trials they combine venetoclax with more intensive chemotherapy show signs of good efficacy with good response rates, there are definitely signals of increased toxicity, hematologic toxicity, primarily. Which is not really unexpected with venetoclax knowing that it can cause significant lowering of white blood cells, platelets, and hemoglobin.

Then finally, there is a lot of interest in doing these types of combinations with venetoclax in different subsets of AML. And one subset of AML that has been very important recently is that of the IDH-mutated AML population of patients. IDH is a fairly common mutation that occurs in either in the form of IDH1 or IDH2, and there’s about a 15-20% incidence of IDH mutations in AML. Though we do have an inhibitor for both of these types of mutations, ivosidenib for IDH1 and enasidenib for IDH2, but there also appears to be a strong role for venetoclax plus azacitidine in IDH mutated AML. We saw from a series of patients presented by a physician at MD Anderson looking at outcomes with venetoclax plus azacitidine in IDH mutated AML. The response rates were very high when you give HMA plus venetoclax to these patients with IDH mutated AML. But, I think more importantly, is that there were what we call high intra-patient response rates when switching between venetoclax and HMA therapy with IDH inhibitor continued regimen. In other words, a patient would have a good chance of responding to the initial therapy, then, if or when that therapy stops working, having a good effect from the salvage therapy with the other regiment, So if you received initially azacitidine plus venetoclax, and then had a relapse, the IDH inhibitors worked well and vice-versa if have received an IDH inhibitor, then subsequently received HMA/venetoclax at a later time point, that also worked well.

So it’s encouraging to see that you can potentially sequence these drugs and get continued responses along the way that ultimately we think that will help survival and keep patients in a better state of health for longer.

So I just wanted to take a few minutes also and discuss some of the newer more novel therapies that are really hitting or approaching the landscape right now. One of these is called CC-486, also known as oral azacitidine or onureg, and this drug was shown in a recent literature to prolong overall survival in patients who are in first remission from their AML who had received induction chemotherapy. So this drug was used as maintenance therapy after a variable number of consolidation regimens and people who got this onureg or azacitidine drug as maintenance therapy, it resulted in longer survival compared to those who had received placebo. This was presented at last year’s ASH meeting, but this year’s ASH meeting provided an update, a very important update, showing that the overall survival advantage from this drug, this oral azacitidine drug, when used as maintenance was independent of whether a patient had measurable residual disease at the time that they went on to the maintenance therapy. In other words, whether you had MRD (measurable residual disease) or not at the time of the study entry, your responses were still more favorable, your outcomes were more favorable if you received this oral azacitidine drug. So this was FDA approved earlier this year for patients in the maintenance phase of therapy for AML who had got prior induction chemotherapy. 

And importantly, this drug was also shown to be able to convert about 25% of patients who were positive for measurable residual disease, to convert them from positive to negative. So even though they were in remission, they had measurable residual disease and this drug in about 25% of the cases converted them from positive to negative. So that’s a very important finding as well. 

Another important drug that I think you should keep your eye on is a drug called magrolimab. This is an antibody against a certain type of protein that is present on an immune system cell called the macrophage. And when this magrolimab drug is combined with azacitidine in a recent clinical trial, it was demonstrated very high response rates of over 65%, and in particular in patients with P53 mutation, which is a very bad mutation to have in most cancers including AML. In patients with this high-risk mutation, the combination magrolimab with azacitidine appears to be effective based on the early data that we have with high response rates.

And then finally, I just wanted to make mention of another important area in, not really just AML, but all cancer, and that’s outcomes disparities between different races and ethnic groups. And we saw a very important presentation at the plenary session this year where the authors reported outcomes amongst younger patients with AML who are African American compared with caucasion. And the data clearly indicated a worse overall survival amongst black patients compared to white patients under age 60. And this included patients who are enrolled in clinical trials. So that, it appeared that African American patients had a worse outcome than Causian patients with Acute Myeloid Leukemia. Highlighting the need to better understand various risk factors and other factors that play into these disparate outcomes between our black American population and our white American population, which I think could shed light on additional disease characteristics that many help everybody.

Katherine:

Dr. Lancet, thanks so much for joining us today

Dr. Lancet:

Thank you very much for having me. It was good to be with you.

Katherine:

And thank you to our audience, I’m Katherine Banwell.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

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

Related Programs:

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

Related Programs:

Myeloma Treatment Decisions: What Should Be Considered?

Which Myeloma Patients Should Consider Stem Cell Transplant?

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.

Myeloma Treatment Decisions: What Should Be Considered?

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Myeloma Treatment Decisions: What Should Be Considered? from Patient Empowerment Network on Vimeo.

When deciding on a myeloma treatment, what factors affect your choice? Dr. Joshua Richter shares key considerations, the patient role in making decisions, as well as key questions to ask about 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

Related Programs:

Which Myeloma Patients Should Consider Stem Cell Transplant?

Myeloma Treatment: When Should a Clinical Trial Be Considered?

Is the COVID-19 Vaccine Safe for Myeloma Patients?

Transcript:

Katherine:

Dr. Richter, would you please start by introducing yourself?

Dr. Richter:

Sure, my name is Dr. Joshua Richter. I’m an Assistant Professor of Medicine at the Tisch Cancer Institute Icon School of Medicine at Mount Sinai and the Director of Myeloma at The Blavatnik Family Medical Center at Chelsea at Mount Sinai.

Katherine:

Great. Thank you. When making a treatment choice, what are three key considerations for myeloma patients?

Dr. Richter:

Absolutely. So, whenever we decide on treatment options, we consider three main topics: patient-related factors, disease-related factors, and treatment-related factors. So, patient-related factors are easy. How old or young are you? How fit or frail? Do you have any comorbidities, meaning other medical problems like heart disease or diabetes?

Disease-related factors are another important one. How aggressive is your disease? Is it rising up very quickly? Is it very slowly? Do you have something that we call extramedullary disease which means myeloma outside the bone marrow in the mass that we call a plasmacytoma? And that influences how we treat things.

And the last is treatment-related factors. What treatments have you, previously, had, how did you respond to them, and what side effects did you have?

If you developed a lot of neuropathy with one drug, we may not want to choose a drug that continues to have that type of side effect profile.

Katherine:

What’s the role as a patient in making treatment decisions?

Dr. Richter:

The role, from my standpoint of the patient, is honesty. You don’t get extra points for being in pain. I want to hear from you. I want you to tell me what your concerns are, short-term, long-term. I want you to tell me about little problems that you don’t – it’s not that you don’t want to bother your care team, we want to know.

Because something little may mean something big to us. So, all we want is for your well-being. And the better we keep those lines of communication open, the better.

Katherine:

Are there questions that patients should consider asking about their treatment plans?

Dr. Richter:

Absolutely. I think in a day and age where there’s so many different options, I think it’s always important to ask the care provider, what are the alternatives to this? Or why did you select this treatment for me? Because many times, there are alternative answers. So, in myeloma, there are a lot of options that may be good for someone. And the physician team may say we recommend this drug, and the patient may have trouble getting back and forth to clinic for logistical reasons. And there may be an all-oral alternative that if you don’t ask, we may not know that that’s going to be your preference. So, really that dialog is crucial.

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.

See More From INSIST! 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:

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.

Myeloma Testing and Treatment: Insist on Better Care

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In this podcast, Charise Gleason a nurse practitioner, provides an overview of myeloma. Charise discusses necessary myeloma testing, how test results may affect treatment options, and why patients should ask questions and seek advice from their healthcare team without hesitation.

About the Guest:
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.

Don’t miss an episode and subscribe to PEN’s Empowered! Podcast wherever podcasts are available.

Patient Profile: Lisa Hatfield Part V

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This completes a five-part series from empowered multiple myeloma patient Lisa Hatfield. (Read Part I, Part II, Part III, and Part IV) In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part One Lisa tells her story. In Part Five Lisa concludes her advice to newly diagnosed cancer patients through example by sharing her own experiences, connecting to readers, and offering hope for herself and others.

Share

Not in a million years did I think I’d post an open, raw account of my cancer experience. Not one to share personal trials, other than the occasional “it’s been a long week,” I still find it surprising that I yearn for an hour to post on a website dedicated to people sharing stories about health challenges.

My decision to share came quickly, as my kids were in middle and high school at the time of my diagnosis. My diagnosis, paired with the word “incurable,” frightened me and my family. Rather than questions directed at them, I chose to notify their schools and my close friends and family about my diagnosis, requesting that questions come to me. In exchange for our daughters maintaining a normal school routine, we decided to share details by posting to a secure website, to keep those close to us informed.

Choosing to unveil your journey is deeply personal. Besides a gratitude journal, I’ve never been one to document my activities, thoughts, feelings. While in Houston, Lance set up a CaringBridge site. Prior to the first journal entry, I methodically moved in and out of appointments, listening, and absorbing the words. I was shocked, scared, numb, and out of my body. It only took a few keystrokes before emotions were unleashed. Journaling and sharing allow time to reflect. Not all entries are shared publicly. It can be highly cathartic just to write. Share with your journal alone or share with others. Occasional sharing with others is both unifying and comforting, as friends and family find a common thread to tie your diagnosis with their experiences. Sharing provides connection, and leaves you feeling less alone.

The degree to which you share your trials, tribulations, and triumphs, and when, is up to you.

Connect

One of my favorite books is The Blue Zones, by Dan Buettner. Buettner first released an article in National Geographic, then published his book on the “blue zones.” I’m summarizing this in my own words, but the blue zones refer to geographic regions around the globe that have the highest percentage of centenarians, who also have a good quality of life in their later years. These locations include Loma Linda, Sardinia (good reason for a trip to Italy), Ikaria (reason to visit Greece, too), and several other locations. In his research, Buettner discovered that the culture in these areas integrate physical and social health as parts of everyday life. Things like unintentional exercise (like walking to the market or cleaning), eating native/local foods, and at the top of the list, strong social connections. It reminded me of my grandma who used to have “coffee hour,” more like 3 hours, with her neighbors each week. They loved their weekly gatherings, often bonding over their health ailments, as they aged. I believe that each of them had a better quality of life because of those regular visits.

Upon diagnosis, a friend sent an email that ended with, “Lean hard and lean often.” He wanted us to rely on our network to get through the challenge ahead. Depending on others is incredibly difficult for many people, including me. When a neighbor set up a meal calendar, I was overwhelmed with the response and felt guilty about the possibility of burdening others and their time. She explained it like this: do it for others; let us cook meals; to allow others to provide something to you alleviates their feelings of helplessness. I am so grateful I accepted. As the fatigue swept in, my ability to cook, let alone stand for more than 2 minutes, vanished. My family loved the meals, and we’ve since collected recipes and voted on our favorites (all meals were excellent) that we fix monthly. Though a note on the sign-up sheet advised the chefs to place meals by our front door, as not to disturb us, I anxiously waited by the door every Monday, Wednesday, and Friday. Swinging the door open and greeting our friends was the highlight of my day. My energy lasted about 5 minutes, on a good day, but it felt so powerful and good to collapse on the couch after experiencing that connection.

Connection with others is important; however, connecting to anything can uplift: your animals (dogs, cats, birds, horses etc.,); your environment (sitting outside or gardening); your routine (sipping a warm cup of coffee in the morning or an evening walk); your faith/beliefs/thoughts. We are wired to connect. To belong, love, and be loved is on Maslow’s Hierarchy of Needs, a theory in psychology made up of a five-tier model of human needs. Connection is key to improved well-being, both physical and emotional. Who knows? You might conquer cancer and join the circle of Buettner’s centenarians. It’s worth the effort to connect.

Hope

While reading this same book, I was introduced to the concept of “ikigai.” (Icky-guy). Ikigai is a Japanese term that roughly means a person’s “reason for being.” As Buettner discusses in his books, TED talks, and articles, Ikigai is bigger than just something you want to do as a service; a person never feels obligated or forced into the purpose. It is something that gives value to a person’s life, as it gives life meaning. It is the reason you get up in the morning. When I began each of my cancer treatments, I wondered why I was diagnosed with multiple myeloma and why I had to endure biopsies, radiation, surgery, chemo, and stem cell transplant (collection). Each new treatment comes with a renewed sense of fear and uncertainty.

Hope is often elusive, during a cancer battle. As a myeloma patient, the word “incurable” was the vacuum that sucked the hope from my spirit. Infusions were a part-time job, as I spent half a week in the chemo suite for six months. I appreciated the openness of the chemo suite, chairs side-by-side and few closed curtains. I loved going to chemo. It felt safe. It was in the chemo chair where I heard stories of both hopelessness (from failed chemo, metastasis, fear of pain, suffering, and death) and of hopefulness (seeing family, a chemo break, a provider sharing a new study showing dramatically improved outcomes, a new drug approval, good test results, a random stranger saying, “I believe,” and connecting with friends). Hope is found in comments from your care team, friends, family, and strangers. Hope is in your experiences (“manufactured hope” from steroids counts, too). Hope is in your faith, however that manifests in your life, and in the belief that something bigger than you can help you fight cancer. Relish moments of hope…of yours and of others. Write them down when you can and, on occasion, reread them.

Now that I’m further along in my cancer journey and in pseudo-remission, I contemplate: Why…what is the purpose of this? What am I supposed to do with everything I’m learning from this? How can I use this to do something productive or meaningful? I don’t know the purpose yet, but when Lance and I talk, we know there is something more to it. This search for purpose is what gives me hope, now. I know there is a purpose in this experience that we will figure out. My ikigai. Our ikigai. I hope we can do something good.

Read more patient stories here.

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

Related Resources:

 

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

Related Resources:

 

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

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

Related Resources:

 

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?
 

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