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What Key Steps Should Follow a Myeloma Diagnosis?

What Key Steps Should Follow a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.

A myeloma diagnosis can be overwhelming, so where do you start? Donna Catamero, a nurse practitioner specializing in myeloma, shares key advice for patients and encourages self-advocacy to access the best care.

Donna Catamero is Associate Director of Myeloma Translational Research at Icahn School of Medicine at Mount Sinai Hospital in New York City.

See More From Engage Myeloma


Related Programs:

Who Is on Your Myeloma Healthcare Team?

What Are the Goals of Myeloma Treatment?

How Can Myeloma Patients Take an Active Role in Their Treatment and Care

How Can Myeloma Patients Take an Active Role in Their Treatment and Care?


Transcript:

Katherine:

Donna, would you please introduce yourself for us?

Donna:

I’m Donna Catamero. I’m a nurse practitioner at the Mt. Sinai Hospital in New York City, where I focus on clinical research and treatment of myeloma patients.

Katherine:

So, as a nurse practitioner specializing in myeloma, what’s your role in the healthcare team?

Donna:

So, I have several roles. So, the first role is caring for multiple myeloma patients, in particular, treating patients on clinical trials, managing their side effects, managing their treatment. My other role is a nurse educator. So, I help train our nursing staff and our research staff on myeloma, new therapies, “Myeloma 101”. So, I really help train and on-board our new staffing.

Katherine:

Excellent. When first diagnosed with myeloma, what three key pieces of advice do you have for patients and caregivers?

Donna:

So, number one is be your best advocate. So, learn everything you can learn about your disease. Learn about the treatments, the side effects, the treatment schedules. Don’t be afraid to ask questions and it’s okay to ask a question multiple times because we might not commit it to memory. So, learn as much as you can; learn how the drugs work. That’s why I’m saying knowledge is power and really, knowledge will lead to you being your best advocate.

And number two, it’s okay to have a second set of ears with you. So, sometimes the situation might be overwhelming and we might not hear or understand what’s being told to us. So, it’s important to have someone, a loved one, a caregiver, with us, so that they can also hear what the healthcare team is telling them. And I know in the day and age of COVID, there may be restrictions for visitors in the healthcare setting, but we can do recordings. We can have loved ones on the phone, so that they can hear what’s being told. And number three, is do not be a martyr. There’s no need for anyone to suffer.

If you’re in pain, let your team know. We can provide a lot of supportive care and get you through the most difficult times of your diagnosis.

Katherine:

Why is it important that patients engage in their care and treatment decisions?

Donna:

We have many options we can offer patients. Back in the day when I first started in my nursing career, we had only a handful of treatment options for patient. Now, we have an entire toolbox of treatments we can offer patients. So, it’s important to understand the treatments, the side effects, the schedule, and see if that aligns with your treatment goals so that this way you can make a very informed decision. 

Finding Your Support As a Newly Diagnosed Patient

From PEN-Powered Activity Guide VIII: Supporting Your Support System

Finding Your Support As a Newly Diagnosed Patient from Patient Empowerment Network on Vimeo.

View PEN-Powered Activity Guide VIII


Transcript:

Lisa Hatfield

It’s hard to know how much to share, when to share, who to share with, when you have kids, when you have colleagues, when your friends and neighbors see that you’re maybe not doing so well, or know that you’re in the hospital, they want to know, but it really has to be a decision that is best for you and taking care of yourself during that time and your family at that time. So, one of the things that kind of that flows into another question is when friends and family hear that, people jump in

and they want to try to help you get messages, phone calls, text. How can I help? What can I do? How are you feeling? For me anyway, I loved that kind of support, but it does get overwhelming, and I know for anyone who has gone maybe to have stem cells collected or staging, when you’re gone for several weeks at a time, it’s really difficult to keep up on those messages and everyone’s intentions are so good. And they really do want to help. So, we had actually set up a Caring Bridge page where I could communicate on my own time or my husband could communicate the information, so really, like you said, doing things on your own time and just disclosing as much information as you want to.

There was a patient who had asked me how to deal with a family member who as they were talking about their myeloma, as he was explaining it to her family, that person got very choked up, and so she said, I felt like I was trying to take care of them as I was dealing with my own diagnosis, so I didn’t really know exactly what to say other than just be sure to take care of yourself at that time, whatever I pray for you is going to be the best… Whatever is best for you is going to be the right thing for you, but the next question I had is when people do start asking, how can I help… Can I drive your appointment? Can I bring meals to you… Maybe you want them to help out, which is a pretty easy one, but what if you don’t want them to help out? Again, these are questions your doctors might not be able to answer, but they happen a lot with myeloma or cancer patients, how do you handle that when people are asking, either you don’t have the time to respond, or maybe you don’t want the help, have either of you have any of you had that experience with your friends and family network.

Sheri Baker:

Yeah, I had a lot of people jump in and offer meals or whatnot, in the beginning, I accepted. Especially in the beginning when I was starting to…Well, when I was in the hospital too, I was doing my treatment, I was learning how to do dialysis, so the first two to three months were kind of hectic, and I had a friend who offered. She’s like, every Wednesday, I’m going to bring you a meal.

And I accepted that up until about like Thanksgiving. And I called her and I said, I’m back on my feet. But I reserve the right next year when I have to have my stem cell transplant and be in the hospital again to ask you to help out again. And she says, definitely. And same thing with other friends, I was on a renal diet, so they want to know what can we make for you, so you just tell them, but there does come a point in time where you say, I’m doing good now, but down the road, can I call you and ask you to help out again with meals, and then after my stem cell transplant, before I came home from the hospital, a group of friends were like, We want to come to clean your house, and I said, Great.

So, they did come and clean my house, and that was, I have to say that’s uncomfortable because now they’re like all over your house, and you don’t know what kind of state your house is going to be in ’cause you’ve been in the hospital for almost three weeks, so you’re a little embarrassed about the dust bunnies and how bad the bathroom might look, but it was welcome help, even though you might be a little embarrassed about how dirty your house really is, but I think that it was.

For me, it was easier to say, I don’t need to help right now, but next year or in a couple of months, if I need some help, can I call you that and ask for help, so that’s maybe one way to… If you don’t want the help right now to still not totally shut them down, but say, I’d like to have some help in the future.

View PEN-Powered Activity Guide VIII

A Guide to Caring for Each Other: An MPN Patient and Care Partner

A Guide to Caring for Each Other: An MPN Patient and Care Partner from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer dive into how they care for one another. Although, Jeff is the sole care partner for Summer who is living with myelofibrosis admits to still having to care for him as well. Hear how our MPN Network Managers prioritize care for one another.

“Listen to each other really strongly and help give each other what you need.” — Jeff

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo

Prostate cancer patients often have financial costs associated with their care. Expert Dr. Leanne Burnham details ways that telemedicine reduces financial toxicity for prostate cancer care — and shares some of her own experience as a cancer patient when she was a doctoral student.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

 

Transcript:

Dr. Leanne Burnham

So speaking about financial toxicity, let’s just talk about it when it comes to medical treatment in general. Financial toxicity comes in many forms, and I can speak to this a little bit on a personal level, I myself was a cancer patient when I was a doctoral student, and I had to take nine months off of school and do chemo and surgeries, and the whole nine yards and the strain that puts financially on a family depends on what kind of safety guard you have in place ahead of time. When you’re not expecting to get cancer when you’re a young person, it can throw a monkey wrench for sure. And so in my own personal situation, my husband owns a barbershop, and he doesn’t have sick days, right, so if he doesn’t go to work, leave and he doesn’t come home with money. So that time that I was sick, that was stressful on us, because he didn’t necessarily want to call off, but he wanted to call off so that he could be with me, and he’s very concerned after I’m having my treatment, but at the same time, he needs to go to work. And so the stress that that creates for the patient, for the caregiver, that doesn’t necessarily lend itself to the healing process, because what we know is that stress kills literally, quite literally, and I’ve published on that topic before. As it pertains to prostate cancer, we know that chronic stress, cumulative stress spread out over time dysregulates your hormone function and leads to all kinds of disease, metabolic diseases, cancer down the road.

So financial toxicity is a real thing, and there are ways that telemedicine can help to mitigate some of that financial toxicity. So, for example, when you don’t have to call off work, let’s say to make your televisit, then that’s a really great thing. When you don’t have to try to find child care so that you can go to your appointments because now at the hospital setting or the doctors’ offices, you can’t bring your kids with you like you used to be able to just…okay, come sit in the waiting room, or come in the room. It’s not like that you can’t even enter the building most of the time, and so a lot of people have to try to find child care if they were going to go to the doctor in-person. But the benefit of telemedicine is you don’t have to do that, so that’s a saved cost. I know myself; I’ve taken televisit appointments during my lunch break while I’m in lab, and that just works out a lot better, it’s not a day that I have to call off work in order to make that happen. The other way that telemedicine can help reduce cost is there can be reduced visits to, let’s say, urgent care or the emergency room.

I can think of a few situations during this quarantine era with my kids even where certain symptoms come up and I think, “Oh, I really need to take him to urgent care,” but I schedule a video appointment with their doctor, the doctor goes over a symptom checklist and says, “You know what, you don’t need to actually bring them in for an appointment, just bring them in and have them do this lab work real quick and just be in and out, and then we’ll let you know if there needs to be a follow-up.” And then most of the time, there doesn’t need to be a follow-up, or there’s just a prescription that’s needed, and you avoid the extra cost of what going to urgent care would have been, going to the emergency room would have been. And you’re reducing your exposure to COVID, which is not a financial toxicity question, but that’s a benefit that telemedicine has as well.

Advocacy Through Various Mediums with an MPN Patient and Caregiver

Advocacy Through Various Mediums with an MPN Patient and Caregiver from Patient Empowerment Network on Vimeo.

What is patient advocacy and how can you advocate? MPN Network Managers Jeff and Summer discuss the various ways in which they advocate. In addition to volunteering with PEN, Jeff actively participates in a support group. Summer who is living with MPN has decided to advocate through her humor. Make sure to watch to see a snippet of her stand-up routine! 

“Our challenge to you is, as a patient find a way to give your knowledge of how you’re handling your disease to others and you too can become a strong patient advocate.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

MPN Patient and Caregiver Explain How Colors Impact Their Lives

MPN Patient and Caregiver Explain How Colors Impact Their Lives from Patient Empowerment Network on Vimeo.

Are you conscious of the colors in your home? MPN Network Manager Summer and her care partner Jeff have their respective homes filled with colors that bring them joy. They prioritize mindfulness and positivity as part of Summer’s healthcare journey.

Jeff challenges you to surround yourself with colors that put your mind and body at ease.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Advocating for Key AML Testing: Advice From an Expert

Advocating for Key AML Testing: Advice From an Expert from Patient Empowerment Network on Vimeo.

Dr. Hetty Carraway, an AML specialist at Cleveland Clinic, shares advice on advocating for yourself when diagnosed with AML, underscoring the importance of asking questions, and including your caregiver as part of the conversation.

Dr. Hetty Carraway is Director of the Leukemia Program at Cleveland Clinic. Dr. Carraway cares for patients with acute leukemia and bone marrow failure states. Learn more about Dr. Carraway, here.

See More From INSIST! AML

Related Resources:


 Treatment Approaches in AML: Key Testing for Personalized Care

 New AML Therapies vs. Traditional Chemotherapy: What’s the Difference?

 Understanding Risk in AML: How Molecular Testing Affects Treatment Options

Transcript:

Katherine:

What advice do you have for patients when it comes to asking for appropriate testing and speaking up in their own care?

Dr. Carraway:            

This is so important. I think patients are leery to stir the pot or be difficult. I think coming from a place of inquiry, teach me about this, that, or the other thing, help me understand this, that, or the other thing – I would like you to show me why this decision or talk with me about why this decision versus another decision might be better for me compared to somebody else.

I can’t underscore the importance of advocating for yourself and asking questions about why am I getting this drug? What are the side effects to this drug? What is my prognosis? What is different about my case versus somebody else’s situation? How do I best prepare myself in getting ready for the therapy that I’m about to go through?

Those are all important questions that patients should ask. They should certainly have people, if possible in their family be advocates for them. I welcome that, and I think that that’s a really important part of going through this type of therapy for any patient. Your physician should welcome having your involvement in that. Don’t be shy about that. It’s your health, and any investment in that the most important people in that is inclusive of you and your caregivers. They should be a welcome part of the team.

The Caregiver Impact: A Vital Part of Healthcare

Carly FlumerCarly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University […]

Braving the Caregiver Storm

As I sit here looking out the window at the snow that is beginning to fall, I am transported back to January 2011 when I was 28 and my 35 year old husband was diagnosed with leukemia. I was thrown into a snow storm I was definitely not prepared for nor did I think I’d be in. I had little visibility in front of me as the snow fell and flew all around me. I knew cancer was something that had been around for a very long time, and that the knowledge was out there…but as a young woman, I was standing in my own little snow globe without boots, a scarf, or mittens. I had my marriage that I wrapped around me like a warm coat, and held onto that while I attempted to find resources to guide me thorough this new life of mine.

My days of working full-time, then coming home to relax had been exchanged for quick trips to let the pets out after work, then jetting over to the hospital to spend a few hours with my husband before driving back home to spend a few minutes with my pets before going to bed and starting the cycle all over again. I was exhausted and had to figure out how to get warm, protect myself from the elements and survive!  However hard and unknown it all was, I found comfort in knowing that although I was the only young person I knew to go through what I was, millions of people had done it before and I could too. I didn’t know how I was going to do it, but knew I would somehow.

I began to gather resources online by spending hours upon hours late at night on the internet. I looked up financial resources to help with gas cards, how to navigate insurance, disability, and requested all of the brochures possible from the Leukemia and Lymphoma Society and the American Cancer Society. As I gained more knowledge, I felt myself slip into a warm pair of boots, feeling like I had more secure grounding. I was better informed and felt more armed to walk down the road of the cancer journey, despite still not being able to see through the masses of swirling snowflakes and at times, sleet.

I quickly realized that one of the most major parts of this journey was to take care of myself. At first it felt somewhat selfish, as my husband was the patient…however I had to figure out what worked best to keep my batteries charged and running, even when the snowy road threw my tires into a ditch. I started creating blog posts to inform and update our supporters on CaringBridge and Facebook, which allowed me to feel safe, supported and heard, while still having boundaries to not be overloaded via text, phone and email from all of those that wanted to know how things were going. This social support provided the needed warmth on my hands, giving me mittens to keep from getting frostbite from the dangerously low temperatures here in Minnesota.

I learned that taking time away for myself whether it be a cup of tea with a friend, taking a nap, a walk or binging a favorite TV show, was what I needed to do to be able to recharge my batteries to be in the right mental and physical space to be there for my loved one. Caregiver burnout is very real, and I often burned the candle at both ends, learning the hard way why self-care needed to be more of a priority in my life.  I don’t think that our supporters and loved ones can fully grasp or understand why it is so important to go to dinner with friends or to a movie or concert (outside of Covid-19 times of course), when your loved one is in the hospital or stuck at home.  What those that aren’t going through what you are in this crazy world of cancer don’t know is how hard it is to balance it all. Cancer is the belligerent relative at the holiday gathering that no one really knows how to deal with or control. They are there for better or worse, and it’s up to you to know how to balance and work with what you’ve been given.  When you take the time to understand and embrace what is….you can feel more at peace in taking the cancer process day by day, if not hour by hour.  You have to let the little things go, your house may not always be sparkly clean and everything may not get done- but the cancer patient has everything they need and you are a more balanced person to support them. Once I figured out how to balance things better, a scarf was wrapped around my neck, and I was better prepared for the snowstorm.

Cancer is definitely not something that is asked for, however with adequate resources, knowledge, social support and the practice of self-care, it is all doable.  I was able to take my experience as a cancer wife, then widow and beyond to create a book to share with the world on how I navigated the cancer world one day at a time, and live today with such thankfulness for the journey that brought me here today. I still absolutely love snow, and am excited for the snowstorm that is supposed to hit this afternoon with 4-7 inches, as I now know the ways to make sure I am storm ready to walk through the journeys in front of me, as you too, walk through your own snowstorms as well.


How to Be a Good Care Partner 101

How to Be a Good Care Partner 101 from Patient Empowerment Network on Vimeo.

 What is the most important aspect of being a good care partner? MPN Network Managers, Jeff and Summer give tips on best practices for being a phenomenal care partner. Jeff breaks down his strategy for managing Summer’s myelofibrosis, including modifying their schedules due to Summer’s fatigue.

Most important tip?
Jeff: “To be a good caregiver, you have to take care of yourself.”

Want to connect our MPN Network Managers, Jeff and Summer? Email them, question@powerfulpatients.org

Care Partner’s Checklist During a Crisis


 

PEN’s Care Partner Network Manager, Sherea Cary, shares her tips for care partners during a crisis:

 

Managing Side Effects – Nausea and Vomiting

This video was originally published on YouTube by The American Cancer Society on July 11, 2019 here.


Perhaps the most common side effects of chemotherapy, and sometimes other treatments, are nausea and vomiting. This video provides tips for how to cope with these incredibly uncomfortable symptoms.

Learn more at: www.cancer.org/caregivers

Fear of Recurrence

This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.


Did you know that in addition to patients, caregivers may also be concerned about the cancer returning? This is called fear of recurrence. When your loved one finishes treatment and is no longer followed closely by the cancer care team on a regular basis, you may feel anxious. You’ll learn about how to manage those fears through tips on how to better cope with those feelings.

Learn more at: www.cancer.org/caregivers

Stress Management

This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.


Feeling overwhelmed and juggling multiple responsibilities on top of providing care to your loved one with cancer can lead to feelings of anxiety and depression. You might feel as if the weight of world is on your shoulders. Four tips for coping are provided to help lower your stress level and better cope when times get tough. Learn more at: www.cancer.org/caregivers