Multiple Myeloma Archives

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

More resources for Multiple Myeloma from Patient Empowerment Network.

Why Myeloma Patients Should Speak Up: Advice from a Nurse Practitioner

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Why Myeloma Patients Should Speak Up: Advice from a Nurse Practitioner from Patient Empowerment Network on Vimeo.

Speaking up, or self-advocating, may influence a myeloma patient’s health outcome. Charise Gleason provides a brief explanation of why patients should ask questions and seek advice from their healthcare team without hesitation.

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.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources:

How to Get the Best Multiple Myeloma Care No Matter Where I Live?

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

How Targeted Therapy Works to Treat Myeloma

Transcript:

Charise:

I think for patients it’s important to ask questions. I think sometimes they feel like, “I’m sorry I’m asking this,” or, “I’m sorry I’m telling you all about my side effects.” And that’s what’s supposed to happen at our visits.

So, I think patients and their family members or caregivers are their best advocate. And they should never feel bad about asking questions, reaching our, reminding their team of things, and being that advocate. We know about side effects. And we know about these treatments. And we can tell them, but we’re not experiencing them. So, there’s nothing that’s too small. And with everything we do, come some sort of side effect. So, it’s really a team approach to manage these things. And you never want patients to be suffering through. And reaching out to your team, even between visits, is really important.

Writing things down. Coming to a visit with a list of questions. These visits go quickly and if you come with those five things you really want to ask, or more… But have them written down so you don’t miss it in your visit so you feel like you’re part of that discussion and you’re getting the information that you need.

How Targeted Therapy Works to Treat Myeloma

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How Targeted Therapy Works to Treat Myeloma from Patient Empowerment Network on Vimeo. 

Nurse practitioner Charise Gleason explains how targeted therapies work to fight myeloma and how they may be used in combination. Charise also discusses how targeted therapies differ from radiation chemotherapy.

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.

See More From INSIST! Myeloma

Related Programs:

 

Essential Tests & Imaging After a Myeloma Diagnosis

Lab Tests in Myeloma: Key Results to Monitor

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

Transcript:

Charise:                       

Plasma cells or myeloma cells have a target on the outside. And so, CD38 is a very common one. You think of daratumumab, for instance, that targets CD38, because it’s on the surface of every plasma cell.

You have what’s called CS1 on the surface of plasma cells that elotuzumab targets.

And these drugs target that particular marker to break down that myeloma cell in a different way. The reason we use combination therapies are not just because we think this is a great idea to put them together. We know dexamethasone, for instance, is going to make that plasma cell more presentable and make that target more presentable to let, for instance, daratumumab work on it. And then you take something like an immunomodulatory agent that works in another way. But as far as targets, that’s on the surface of the cell is what we’re looking for on that particular one.

With the translocation, that’s one that’s very specific. If you take a translocation (11;14), those patients can express high BCMA, another target on a plasma cell.

And so, that’s the reason again why that works for some of those patients, because it attaches and kills the myeloma starting from that outside and working into the cell.

The traditional chemotherapy approaches just worked at killing everything, including normal cells, right? And so, you have a patient who gets admitted for chemotherapy, for instance, it knocks everything down and with that, the myeloma. And then those cells come back up. And so, you think of that more from a traditional admit to the hospital. We give several days of chemotherapy or the conditioning regimen for transplant with melphalan It wipes out everything.

And so, sometimes we still need to do that and do that maneuver to reset the bar. But there’s more risk to the patient with that, we’re making a patient more immunocompromised. With targeted therapy, it’s more specific to that target. So, it’s really working more to kill those abnormal cells in there. So, the patient doesn’t experience quite that same immunosuppressive state where everything is knocked down.

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

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Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, provides insight as to why identifying chromosomal abnormalities is essential when it comes to targeted therapy as a treatment choice for myeloma.

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.

See More From INSIST! Myeloma

Related Programs:

 

Essential Tests & Imaging After a Myeloma Diagnosis

Lab Tests in Myeloma: Key Results to Monitor

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

Transcript:

Charise:                       

So, testing for chromosome abnormalities or changes are important when it comes to targeted therapy.

And we used to think of this more in that relapse setting. But we also look at it upfront now, because it tells us more about the path of myeloma. And there are reasons to check throughout at relapse, again, to see if something’s changed. So, with targeted therapy, we can use the translocation (11;14), for instance.

Many patients have a translocation t(11;14). It’s not a high-risk feature. But we know on clinical trial we have a drug that we’re using called venetoclax that those patients can be very sensitive to.

And so, we’re looking at this not just in translocations but in sequencing for other abnormalities or gene mutations that can help guide us with these newer therapies. And you see that across all cancer types at this point. So, you can get very specific with a patient’s type of myeloma – that this drug is going to work better because you have this mutation.

So, we look at it upfront. It guides us for risk stratification: standard risk versus high risk. And then we look at it in that relapse setting. Do we have a drug or a clinical trial that this patient will respond better to because of those abnormalities?

When we’re risk stratifying, we know standard risk, medium risk, and high risk. Those are those translocations, those gene mutations, that we know about.

But newer testing, like sequencing, gives us a lot more mutations that we don’t even know what to do with them all yet.

We don’t necessarily have drugs for all of them, but it does help guide us down the road. So, right now some common are the translocations, but also deletion 17p, which we’ve known about for a while. But maybe you see a BRAF mutation, which you typically associate with other types of cancers, but we see that in myeloma as well.

So, it helps us look at is there a drug that our myeloma patient might benefit from because they have a BRAF mutation, for instance. 

Essential Imaging and Chromosome Tests after a Myeloma Diagnosis

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Essential Imaging & Chromosome Tests After a Myeloma Diagnosis from Patient Empowerment Network on Vimeo.

Charise Gleason, a nurse practitioner, explains why tests such as bone marrow biopsy, FISH test and full-body imaging are considered essential for patients after a myeloma diagnosis.

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.

See More From INSIST! Myeloma

Related Programs:

Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key

Lab Tests in Myeloma: Key Results to Monitor

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

Transcript:

Charise:                       

The essential testing that a myeloma patient should undergo following a diagnosis is – obviously, you’ve had those diagnostic test labs, the 24-hour urine, some scans, but the specific things that we need are a bone marrow biopsy.

That includes cytogenetics and FISH, and we can talk a little bit more about that. You also want full-body imaging. We used to always use a skeletal survey, which was an X-ray of the long bones. But, really, the standard of care now is a whole-body scan.

So, depending on what your oncologist or your institution has, that would be a full-body CT scan, a PET-CT scan, or a full-body MRI. So, one of those tests is recommended. It’s not unusual if you have a PET. Like our institution, we use PET-CT. So, for a newly diagnosed patient, we’re also going to get an MRI of the spine for a further snapshot.

What we’re looking for with a full-body imaging is we want to make sure that there aren’t any lytic lesions.

So, with an X-ray, you have to have about 30 percent bone loss before it’s going to show up on an X-ray. So, those traditional X-rays that we used to use could actually miss an active lesion. So, in that diagnosis, we want to know that there is no active myeloma. And those other scans are going to be more specific to that.

So, the cytogenetics of a bone marrow biopsy are going to tell us more about the biology of the disease. So, cytogenetics actually grows out the pairs of cells. And so, that’s why that portion of the test can take a while to get back.

At our institution, it can take two to three weeks, because you’re actually growing out those cells to look at the chromosomes. And remember these are chromosomes, or genes, of the plasma cells. And so, we’re looking for those abnormalities that might be present. So, you think about it more for the biology of the disease.

When we’re looking at FISH, we’re also looking… That test shows a little bit different. It comes back quicker. It shows two different phases of cell changes.

And so, it will tell us about chromosomes as well. But do you have any additional chromosomes – so, that would make it a hyperdiploid narrow. It tells us if there’s a loss of a chromosome – so, you’re missing one, a hypodiploid. It also tells us about translocations – so, when you’ve had a piece of a chromosome change and go to another cell. And so, that, for instance, would be like that translocation t(11;14) or translocation t(4;14). So, it’s essential to have that testing to tell us about that, because it helps guide treatment. And as we talk more about targeted therapy, these things really can come into play.

Is It Possible to Achieve Health Equity in Multiple Myeloma?

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Is It Possible to Achieve Health Equity in Multiple Myeloma? from Patient Empowerment Network on Vimeo.

How can health equity be achieved for underserved communities in multiple myeloma patient care? Watch as a panel of myeloma experts explains.

See More From the Diverse Partners in Your Myeloma Care Program

Transcript:

Rebecca Law:

I want to ask each of you to answer a question. So how can we achieve health equity in the care of multiple myeloma patients sooner rather than later?

Diahanna Vallentine:

I think we all appreciate the fact that the African American or underserved communities do not have enough people that are either willing or know that we need to go into those communities the way they are, meet the people the way they are, so that we can provide them with education, with resources, that are available. I think that is one of the first steps. And fortunately, or unfortunately, with the racial problems we’re having in our country right now, a lot of governors and mayors are opening up opportunities that we got to get into the communities. And I think this might be a great opportunity for the myeloma community to perhaps step up and say we would like to be presented or represented in the community when there are funds and when the interest is really high. I think that if we could establish a foothold that way, then we can just go on and work toward lessening that gap and disparities in the undeserved communities.

Dr. Sikander Ailawadhi:

Diahanna, that was really nicely put. I think what I can add to that is that we basically are already seeing a lot more discussion, a lot more focus coming up to this topic of racial disparity in multiple myeloma at different levels. So, what we need to do is continue to build upon that momentum, continue to build the relationships so that there is actually a combined force from various aspects. I would love to do telehealth going forward, but like Dr. Usmani brought up, if there is not enough reimbursement or leadership or legislation to support all of that, then our wants and needs may not be served fully. So I think developing those relationships, developing those partnerships and moving forward as we’re gaining momentum to address this particular question, this particular issue is extremely important. And I feel it is more hopeful and exciting in the future as compared to where we’ve come from.

Jenny Ahlstrom:

I would just reiterate what Diahanna said. I think it’s in building the programs that are simple enough for everybody to understand and utilize that makes just the usability of them as available as possible, and then building that relationship in those communities where the needs are. I totally agree with what Diahanna’s saying, you need to take the programs to the people where they are and not to expect them to come to your programs.

Dr. Saad Usmani:

I agree with everything that has been said on this topic. And I have to say that this is going to be a two-way dialogue, a two-way partnership. That’s the only way that this can succeed moving forward. Racial disparities are an inherent part of our everyday life, whether it’s in healthcare, whether it’s in other interactions we have with each other, and there’s a lot of historic perspective and context to that. This is not going to be a quick fix, this is going to be a long-term process. But it will have to be a partnership. And I’m talking on a broader level with myeloma care and better survival outcomes for all myeloma patients as the goal. But then looking at the overall societal goals as well, and trying to see how we can remove the inherent biases that everyone has and develop more fruitful productive relationships going forward in our respective geographic regions, but overall in our country as well. I think that’s the overarching theme and tone of the conversations we’re having in the country right now, and it certainly makes sense to do that for myeloma care as well.

Rebecca Law:

I want to take the time to thank each and every one of you for joining me today. On behalf of the Patient Empowerment Network and Diverse Health Hub, I am Rebecca Law. Thank you.

Communicating About Cancer: A Brief Guide to Telling People Who Care

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Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Are Myeloma Clinical Trials More Critical for African Americans?

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Are Myeloma Clinical Trials More Critical for African Americans? from Patient Empowerment Network on Vimeo. 

Are multiple myeloma clinical trials becoming more critical for African, Hispanic, Asian, and other racial and ethnic groups as U.S. demographics change? Watch as Dr. Sikander Ailawadhi from the Mayo Clinic explains the impact of low trial participation rates by African Americans and his experience with some of his myeloma patients.

See More From the Diverse Partners in Your Myeloma Care Program

Transcript:

Rebecca Law:

Dr. Ailawadhi, the demographic in America is changing quite rapidly. Does this mean clinical trial participation is more critical than ever?

Dr. Sikander Ailawadhi:

It absolutely is, Rebecca. There is no way to kind of shine enough of a bright light on this topic. And I’m glad that we’re talking about it. There is more interest and also more thought process being put behind it. So you’re right in saying that the demographics are changing quite a bit. So we don’t know how and when we’ll get all the 2020 Census data; but over the past few years, the Census Bureau has been releasing updates where we know that Hispanics are the fastest growing racial ethnic group in the country and followed by Asians and African Americans are already a huge part of our demographic. So whatever we’ve discussed before when we said that patients can present at different ages, they can present with different symptoms, we also know from our experience of other diseases like hypertension, high blood pressure, diabetes, that the way certain drugs are metabolized could be inherently genetically different between, let’s say, African Americans and whites.

Unfortunately, in myeloma, we don’t know any of that, because clinical trial participation overall in cancer and also especially in myeloma, in a disease where African Americans may be affected by this diagnosis way more, the clinical trial participation is extremely low, in single digits. Which means that all the drugs that we utilize are FDA-approved, have become FDA-approved with not enough safety or benefit data in racial ethnic minorities. Now, I’m not saying that there is any problem in using those drugs; we use them, they benefit patients outrightly. But I think that underscores the importance that clinical trial data and generating robust safety and benefit data in all racial ethnic groups, considering that our demographic 10 years from today is not going to be what it is now or what it was 10 years ago. So understanding the dynamics of drugs, their impact, their benefit, their safety, in all racial ethnic groups becomes extremely important. And that can only be done when either clinical trials are specifically done in those populations, which, as Diahanna mentioned very well, appropriately before, it’s a very challenging thing, because there has been a traditional lack of trust there. So it becomes very important.

I can tell you that I had mentioned earlier that we’re doing a questionnaire just to understand why patients don’t want to go on clinical trials, or do they not want to go on. It’s just maybe, it’s an access issue. And I distinctly remember—I cannot take an anecdotal look at it, because I’m a clinician, I’m a researcher, I’m not supposed to look at the end of one. But I’ve had at least two specific cases where newly diagnosed multiple myeloma African American patients who’ve come, and I’ve very clearly explained to them that I’m just wanting them to consider going on this study with a one-time questionnaire. No samples, no bone marrows, no treatment, no nothing. All I want to understand is what they think about clinical trials. It’s a five-page questionnaire, 50 questions, multiple choices. We’re not taking any other data. Both these patients took the—they signed the consent, so they took the questionnaire. They took it home, we could do it electronically, but they said they wanted to think about it.

“Know what? I don’t feel comfortable with going on a clinical trial, even though it’s a one-time questionnaire. I’m going to kind of respectfully decline.” And I initially could not understand the whole thought process because it seemed, “Well, it’s just a questionnaire. We do so many surveys online.” But I’ve talked to them several times since then, and the thought process, which Diahanna brought, up about that lack of trust, that came out loud and clear. These patients are still receiving their treatment with us, because initially there were concerns, they said, “Well, if I don’t do the questionnaire, maybe this doctor won’t treat me.” They’re receiving their treatment with us, they are continuing, we’re good, we have a very good relationship, but they decided not to go on those. So I think clinical trial participation is extremely important, especially because of the changing demographics, like you said.

Take Care of Yourself and Your Family’s Health

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Building Resilience and Boosting Immunity

At a time when health is top of mind for everyone, despite the stressors, how can we ensure to emerge emotionally, physically and mentally resilient? Patient Empowerment Network Care Partner Manager, Sherea Cary sits down with distinguished guests, Sara Goldberger and Dr. Shivdev Rao to discuss building resilience and boosting immunity. Both experts define resilience, provide tips for boosting heart-lung health and provide useful tools for cultivating resilience.

Defining Resilience

Defining Resilience from Patient Empowerment Network on Vimeo.

Tips for Boosting Heart and Lung Health

Tips for Boosting Heart and Lung Health from Patient Empowerment Network on Vimeo.

Community Resources & Tools for Cultivating Resilience

Community Resources and Tools for Cultivating Resilience from Patient Empowerment Network on Vimeo.

How Can a Myeloma Patient Advocate/Financial Advisor Help?

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How Can a Myeloma Patient Advocate/Financial Advisor Help? from Patient Empowerment Network on Vimeo.

Diahanna Vallentine has not only experienced life as a multiple myeloma caregiver and patient advocate but also as a financial advisor to patients. Watch as she shares things she’s learned talking with African American patients—and how she helps those in underrepresented communities with affordable access to myeloma treatment.

See More From the Diverse Partners in Your Myeloma Care Program

Transcript:

Rebecca Law:

Diahanna, we know many of the roadblocks to treatment boil down to access and the web of financial toxicity. In the work you do, how are you helping patients make informed decisions, and can you please provide some examples?

Diahanna Vallentine

I think one of the main variables that causes the disparity overall before even treatment is needed is a mistrust in the African American community as a result of past historical treatments, experiments that were done on the African Americans. And I find that talking to anyone. If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare.

Some of the things that I am doing is I try to be available to talk to anybody, no matter what time of day it is, talk to them where they’re wanting—where their needs are, listening to them and not making preconceived notions about who they are, where they come from, what their experiences are. And it’s an ongoing educational program for me, because we all come in—as difficult as we are, come in with preconceived notions of what our knowledge is, what our experience is, and how we’ve treated other people. And that has been one of the things that I have been practicing every day when I talk to patients, whether it’s in-person or on the phone. I have a unique perspective having been a financial advisor for more than 20 years, being a caregiver to a myeloma patient, being a patient advocate and not having the fear. I guess that’s something I grew up with. Not having the fear to talk to people or ask people questions, and let them know from the on-go that we all have something in common.

And once you establish that area of trust, then everything else comes easy. When you realize that that could be me in that bed, that could be my mother, my father in that bed, then we all become as one, per se. And so some of the things that I do is I talk to a person at the level they want to be spoken to. I ask them how they want me to communicate with them, how often they want me to communicate with them, is there anyone else they want to be involved in it. And then I take that information that they’re trying to gather and find resources for them so that financial toxicity will not become an issue, so that we can discuss with their caregivers what the treatment plan is, what the anticipated cost is, so that we can work around some of those financial barriers that they may come up against. And whether that’s looking at their current insurance plans, insurance plans they may have access to in the future, whether it’s through a spouse or their employers, or Medicare, Medicaid. We try to anticipate what those things are so that the financial toxicity does not become a burden, which again, affects their care, because stress affects your care and your outcomes.

Oncology Social Worker Checklist

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Resiliency Checklist During the Time of COVID-19

Sara Goldberger, MSSW, LCSW-R, has been an oncology social worker for 30 years. Currently she is the Senior Director, Program for the Cancer Support Community Headquarters. She has also worked in hospitals and community NFP settings. She is a member of several Advisory Boards is a frequent presenter and author. As AOSW strives to continue to advance excellence in psychosocial oncology, Sara hopes to play a part in efforts to educate, advocate, develop resources, expand on research initiatives, and create networking opportunities so that AOSW can improve the care of people impacted by a cancer diagnosis.

Myths vs. Facts: Myeloma Health Disparities Care Infographic

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MythsFacts_Diverse Partners in Your Myeloma Care.pdf

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? Resource Guide

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Diverse Partners in Your Myeloma Care_Program Resource Guide_F

Turning Your Home Into a Sanctuary

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In Five Simple Steps

These days, whether you’re spending more time there or you need a place to unwind after a long day, you need to feel like your home is your happy place. With the help of a few simple tips you can turn your home into your very own sanctuary.

1. Define your sanctuary

Think about where and when you feel the most comfortable and happy; then bring elements of that into your space. Whether you feel your best reading under a cozy blanket and low lighting, or painting in a sunlit room, consider your needs for the space. It doesn’t have to be complicated, says Professional Organizer Kristy Potgieter at KLP Organizing, LLC. Her philosophy is: simple is better.

2. Appeal to the senses

Sound, smell, and color can all evoke emotions. Play music that soothes you or makes you happy, use candles, oils, or incense to fill your space with your favorite scents, and paint your walls with neutral or calming colors. Even changing out your light bulbs can make a difference. Pink light bulbs give a warm, calm glow to your space.

3. Ditch the clutter

Clutter causes anxiety and stress so your best bet is to get rid of it. While clutter looks different to everyone, a good rule of thumb is to remove anything that doesn’t serve a purpose or make you happy. For the things you use on a regular basis, Potgieter recommends storing them in baskets and bins, which can be both decorative and functional. She also says keeping your kitchen counters clear is a simple way to make your home appear clutter-free.

4. Bring nature inside

You can place a vase of fresh-cut flowers on your table or bring in some house plants. If you don’t have a green thumb, a photo of the ocean, a wall painted green, a water fountain, some seashells, or a piece of wood are all okay ways to incorporate nature into your home. It can be as simple as opening a window and letting in the sunlight, which is a known mood booster.

5. Unplug from technology

You don’t have to ban technology altogether, but pick times, such as during meals and the hour before bed, to not use technology at all. Spend less time on social media platforms by deleting the apps on your phone and only using your computer to log onto those sites. You can also use the “do not disturb” settings on your devices to allow yourself some down time.

 

Whatever you do, remember Potgieter’s philosophy and keep it simple. Address the things that are most important to you and let the other stuff go. “The first thing I think of when making a home a sanctuary is really taking a look around and making sure all the things you see are things you love,” she says.

What Do Disparities in Multiple Myeloma Look Like?

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What Do Disparities in Multiple Myeloma Look Like? from Patient Empowerment Network on Vimeo.

How do health disparities in minority populations with multiple myeloma play out? Expert Dr. Sikander Ailawadhi from the Mayo Clinic joined to discuss data about African Americans and Hispanic Americans with myeloma. Watch as he shares the average age of disease onset, how their symptoms vary, transplant rates, new treatment rates and more.

See More From the Diverse Partners in Your Myeloma Care Program

Transcript:

Rebecca Law:

Dr. Ailawadhi, for our audience who might not understand what health disparities in myeloma look like, can you give a high-level definition and overview, please?

Dr. Sikander Ailawadhi:

So, there are disparities at a lot of different levels, just taking the case of multiple myeloma, specifically. So, for example, patients from different racial and ethnic backgrounds tend to present in a different way. So, African Americans present with the diagnosis at a much younger age. The presence of the myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, is seen much more frequently in African Americans. Even I would say include Hispanics into that, because Hispanics also get diagnosed at a much younger age. The disease presents very differently, for example, African Americans will present much more frequently with anemia or kidney dysfunction, but they will present with much lesser bone fractures in multiple myeloma.

So, those are disparities in how the disease presents or how it becomes kind of evident. Now, when we talk about disparities, one of the very stark shades of disparities in myeloma is how treatment is given or made available to patients, especially when we talk about racial minorities. So, there has been a lot of literature looking at this, and it has been seen that patients who belong to racial and ethnic minorities, they do not get access to the same kind of treatment in the same timely fashion. So, for example, African Americans and Hispanics are much lesser likely to get a transplant when it comes to myeloma treatment. Now again, I don’t want to say that improvements have not happened. The rates of transplant, rates of new drug use, have increased across the board for all races and ethnicities, but when we compare, the rate of that increase has been much slower in African Americans.

In fact, one of the studies that we looked at, some national data, it took Hispanics a little more than 100 days from the time of diagnosis to get to initial treatment with bortezomib (Velcade), which is a cornerstone drug and is used almost across the board for initial therapy. So, the treatment, there are disparities. And similar, there are some outcome disparities. While on the face of analysis, it’s been said several times that races or different racial sub-groups will have similar outcomes, I think the important thing to understand is that biologically, African Americans have a less aggressive disease, which means that if given the right kind of treatment, African Americans are supposed to in fact have a slightly better outcome than even whites. And there’s one large analysis that came out of the VA system from the Dana-Farber group last year, which was actually highlighting that, because they were able to show that in an equal access system like the VA, African Americans actually had better outcomes, or better survivable. So, there are disparities at the time of presentation, at the time of how treatment is received, how timely is the treatment, and in fact also, outcomes. Because I would say that having an equal outcome for a racial minority is not necessarily lack of disparity, that may actually be underscoring the disparity.

Daily Practices for Cultivating Awareness and Anchoring Yourself in Resilience

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Resilience is our capacity to bounce back from the inevitable challenges of being alive. When challenges arise, our meandering minds can take us into various worrisome directions, leading to a host of negative emotional states and their subsequent adverse effects on our well-being.

Although we may not have control over the external factors in our lives or needless to say our genetic predispositions, we do have the capacity to cultivate inner psychological faculties that enable us to weather the storms of life with relative calm. For most of us, these internal resources are underdeveloped. They require intentional cultivation through the regular practice of actions that support their development. Among these inner resources are self-awareness, self-acceptance, and a secure inner base to fall back on.

What is Resilience?

What is Resilience? from Patient Empowerment Network on Vimeo.

Anchoring the Mind

Anchoring the Mind from Patient Empowerment Network on Vimeo.

Focusing the attention on the natural breathing process and body cultivates self-awareness and tends to have a calming effect on the mind. By doing so non-judgmentally, we accept the process as it is truly experienced. This is not an advocation of apathy towards our lives. To the contrary, by shining the light of awareness on our experience and accepting it as it truly is, we are given a clarity from which to make any necessary course corrections in our lives.

Awareness of Breath

Awareness of Breath from Patient Empowerment Network on Vimeo.

Awareness of Body

Awareness of Body from Patient Empowerment Network on Vimeo.

A secure base is supported by continually returning our attention to our breath and body when distracted by the meandering nature of the mind. By regularly practicing the activities here offered you can enhance your capacity to bounce back and calmly weather the fluctuating trials of life.

Broderick Rodell has a PhD in chemical engineering from the Georgia Institute of Technology and a Doctorate of Naturopathic Medicine from Bastyr University. His search for self-betterment led to his passion for mindfulness. He considers himself a dedicated student and practitioner of yoga including contemplation, meditation, breath work, and mindful movement. Broderick believes that through individual evolution we can all tap into greater possibilities within ourselves.