PEN Blog Archives

How to Be a Partner in Your AML Care

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How to Be a Partner in Your AML Care from Patient Empowerment Network on Vimeo.

How can acute myeloid leukemia (AML) patients take a proactive approach to their care? Expert Dr. Ellen Ritchie shares advice for qualities to look for in your AML care provider and how to ensure all your questions are answered by your healthcare team.

Dr. Ellen K. Ritchie is assistant professor of medicine and a member of the Leukemia Program at the Weill Cornell Medical College of Cornell University and the New York Presbyterian Hospital. More about Dr. Ritchie, here.

See More From INSIST! AML

Related Resources:

Being Pro-Active in Your Care: Key AML Testing to Advocate For

Advocating for Key AML Testing: Advice From an Expert

 Advocating for Key AML Testing: Advice From an Expert

Transcript:

Katherine:

Dr. Ritchie, what advice do you have for patients to help them feel more confident in speaking up and advocating, being a partner in their care?

Dr. Ritchie:

Well, when you choose a leukemia doctor, you need to choose someone that you can actually communicate with. Someone who you feel is not allowing you to ask questions, or is not curious about what your life is like, you may want to think, I want to check out somebody else.

Because it’s really important you like the person who’s your doctor, and that you have a trust relationship together. So, it’s really – I tell some patients it’s a marriage of convenience that we have. And that you really have to think of it that way. If someone doesn’t allow you to ask questions or if they are not fully answering your questions in a way that you understand, try and speak up for yourself and make sure that the doctor tries to address that. And if the doctor won’t address those things for you, or you feel like you don’t understand what is being explained to you, then you can think about trying to see someone else. I think it’s really important if you can, to write down as many questions as you have about your disease before you come in.

Because often what happens is you get there, you’re stunned by the amount of information, and the questions you wanted to ask, you forget. And the next day, you’re like, “Ugh, I didn’t ask these questions.” So, before you come in, if you write questions. Questions about insurance coverage, that may not be something that we go over. Or questions about toxicities, or questions, “If I’m going to lose my hair, do you have the name of a wig facility?” All these questions that you might have, put them on a piece of paper, so that they can be addressed when you’re with the doctor. And other things will come up, you’ll have other questions when you’re there, but make sure your fundamental questions are answered.

The Difference Between Wanting and Needing: Redirecting and Prioritizing Spending

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Often when I am out shopping, I find myself picking up items that I think I really need. I justify it rather quickly and find myself with buyers’ regret shortly thereafter. The most irritating habit I have is not returning it to the store and getting my money back. Last week, I was cleaning out drawers and found a few bags of clothing that I had every intention of returning but it escaped my attention. I also found dresses, jeans, shoes, several coats, and a suit that had purchased but forgot about. Some of them for my granddaughter who now had long outgrown them and for me, well I thought I needed them.   

I’ve also gone through storage and closets and found household items that “I really, really needed” at the time, but there they were never opened or rarely used some with the sales tags still attached. I thought I should add up the costs of these items and see just how much money I had wasted. It had added up to over a thousand dollars. Yes, I will donate these things to a charity such as a homeless facility, and, it makes me realize it can be a blessing to others, but is there a better way to serve than by happenstance? Am I doing a disservice to myself by spending without being mindful of where my dollars are going? I would argue that both are true.   

I’m learning to be mindful of all of my spendings. It’s making me prioritize my needs and wants. This is especially important when you have ongoing medical bills and prescriptions to manage and pay for. They can seem to be overwhelming at times. Though, I don’t have high medical bills currently, I do recognize that may not always be the case. So, diverting some money into an HSA or a regular savings account for the sole purpose of this future need could help me in the future. You can look at it as investing in yourself or, ” paying yourself first.”  

We all have bills to pay but rarely do we see ourselves as important as one of those bills. Consider setting aside $15 to $25 every pay period for medical expenses. Or, if you have bills that are already outstanding, call the service provider and request to pay a little toward those bills every month. You may be surprised how little they may be willing to take. They are in the business of service and you are their customer. Trust me, they don’t want you to leave. By putting a little each month towards the bills can help you stay in good standing with the medical provider and can help keep the bill from going to a collector and from hitting your credit report.   

Also, do what I did. Look around your house for things you no longer need or don’t want. Consider selling them. Not only will you be freeing up space at home, but you can also make some cash. There are online selling apps like OfferUp, BookScouter, eBay, and more. Terminate subscriptions you no longer need. Pay especially close attention to online subscriptions you may have forgotten about.   

Another creative way of finding more cash is to always make change when buying something at the store. Everything in coin change put in a jar. Deliberately seek out change-making opportunities. You may be surprised at how much you save. I did and saved almost $800.00 in a year.   

Consider online banks that may offer more interest than perhaps your neighborhood bank. Buy only what you’re going to eat. A study published in the American Journal of Agriculture Economics found that the average household wasted 31.9% of its food. The US total annual cost of wasted food was estimated to be $240 billion or $1,866 per household.  In fact, wasted food is the largest component taking up space in US landfills. And the United States discards more food waste than any other country.  That adds up to 30-40% of the entire US food supply. So, don’t waste and keep that money in your pocket.   

Spending comes down to desiring to satisfy oneself, however temporarily, and often supersedes logic. It’s impulse buying. Even when we know we should be directing our money to important things such as; managing the costs of healthcare, utilities, etc., it’s often difficult to stop wasteful spending. And the temporary feelings of satisfaction quickly wear off when bills start coming in.   

Getting control of this habit is achievable and not really complicated. Create a reasonable budget. Start by keeping a record of EVERYTHING you spend for a month. This may take a bit of work but is well worth the effort. Make a list of all your bills, including anticipated medical bills. Are you spending more than you make? I’ve found that when putting this down in writing, when you see it, it becomes real and important.  Putting together a budget is actually very freeing. It will allow you to reduce impulsive discretionary spending and allow you to focus on getting a firm grasp on your financial life. And, the payday of reduced financial stress is like icing on the cake.  

Overcoming Known Disparities and Access for CLL Patients

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For cancer patients, multiple studies have shown that there are some known barriers to equitable access to care. The overall clinical trials participation rate is only about 5 percent of adult cancer patients. Some of the disparities show lower clinical trial participation rates for adolescent and young patients, patients over age 65, women in non-sex-specific cancers, and patients who earn $50,000 or less annually. And though study results were somewhat mixed about whether participation rates have increased for Black, Indigenous, and People of Color (BIPOC) communities, it’s vital for BIPOC patients to increase their clinical trial participation rates as the percentages of BIPOC populations continue to rise in the overall U.S. population.

To increase CLL clinical trial participation for underrepresented groups, there are several strategies to improve rates. These strategies include:

  • Starting discussions about clinical trials early in the patient journey, beginning with diagnosis and continuing to discuss throughout their testing process up until discussions start about treatment decisions.
  • Making special efforts to connect adolescent CLL patients and female CLL patients with advocates targeted to their underrepresented age or gender to help patients feel more connected and trusting about clinical trials.
  • Connecting non-native English speakers to translators early in their CLL journey to ensure patients understand clinical trial options.
  • Continuing and extending reimbursement of food and transportation costs as part of clinical trial participation.
  • CLL clinical trial participants sharing their experiences about clinical trials to increase education about trials.
  • Patient advocacy websites and other resources including clinical trials as part of their foundational content for patients and caregivers.
  • Continuing telemedicine as a viable option for initial entry into CLL clinical trials.

Educating CLL patients about clinical trials is an important piece of continuing effective clinical trials. If efforts can continue to reach CLL patients who are underrepresented in clinical trials, these efforts will help to improve care for CLL patients receiving care currently and for those who will need treatment years in the future. As researchers receive more data on the CLL treatments under study, CLL treatments will continue to be refined for subtypes and other factors for optimal CLL care and quality of life for each patient.

Packed with information including clinical trial goals, questions to ask about clinical trials, support resources, and much more, check out the CLL Clinical Trial Cornerstone Resource Directory.

Source

Joseph M. Unger, PhD, Elise Cook, MD, Eric Tai, MD, and Archie Bleyer, MD; The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies; ASCO Educational Book. https://ascopubs.org/doi/10.1200/EDBK_156686?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed&

Lung Cancer Treatment Decisions: What Should Be Considered?

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

What should be considered when making lung cancer treatment decisions? Dr. Isabel Preeshagul shares the factors that may affect treatment options, as well as how the patient can collaborate with their healthcare team for optimal care.

Dr. Isabel Preeshagul is a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Preeshagul here.

See More From Engage Lung Cancer

Related Resources:

Transcript:

 Katherine Banwell:

Dr. Preeshagul, let’s start with you introducing yourself, please.

Dr. Preeshagul:

So, my name’s Isabel Preeshagul. I’m a thoracic medical oncologist at Memorial Sloan Kettering Cancer Center, which is a large academic cancer center in the Northeast. And I’m part of a group of 24 thoracic oncologists.

I specialize in treating patients with non-small cell lung cancer, small cell lung cancer, mesothelioma, and some other thoracic malignancies but most really just focused on lung cancer. I have a very strong research interest in predictive markers for response to immunotherapy as well as targeted therapy.

Katherine Banwell:

Excellent. Thank you so much. What are the considerations when choosing a treatment for lung cancer?

Dr. Preeshagul:

So, that is a very weighted question. And I could talk about that for forever. But to try to be as succinct as possible, the most important thing is to really look at who you’re treating in front of you and try to treat the patient as a whole. It’s not only their diagnosis and their histologic subtype and their stage that’s important.

You really need to think about what’s important to the patient. Is someone a concert pianist or a violinist and giving them a treatment that could potentially cause neuropathy, could that be life altering for them? Or, are they of child-bearing age? What are their priorities?

So, that’s really important to me. Social aspects of a patient’s life, religious aspects, beliefs, ethical beliefs, all of that you need to take into consideration. And then getting more granular, you need to know about the tumor biology.

Do they have any driver alterations? Do they have any other predictive markers that may help you plan your treatment? So, it’s a lot of different things that go into treatment planning.

Katherine Banwell:

Just remind us what neuropathy is.

Dr. Preeshagul:

Sure. So, neuropathy is when the nerves that are in, I guess you could say, your fingers and toes start to damaged.

This can happen from diabetes, from having glucose that is too high for too long, or it can happen from certain chemotherapy agents that can affect the fine nerves in your fingers and toes and cause them to go numb. And this can really be painful. It can be life-altering. It can keep you up at night. It can make your sensation decrease.

So, if you’re walking on the floor, you may not feel a fine, little nail, or you may not even really feel the floor. And if you’re really focused on using your hands for playing the piano or violin or sewing or even any other kind of activity, it can really affect how well you’re able to perform.

Katherine Banwell:

Yeah. What is the role of the patient in making treatment decisions?

Dr. Preeshagul:

So, I think every doctor will give you a different answer for this. But for my practice, I really make sure that the patient is part of the team as well as family members, as long as the patient gives permission. I run everything by the patient, of course. I give them all the possible options ranging from ones that I think would be most efficacious to ones that I think are other options and of course, the option of no treatment, which is always an option, and sometimes, the best options.

So, I really say these are the things that we can offer you, but what do you feel most comfortable with? What’s important to you? And sometimes, patients are taken aback by this question because some patients like to be told, “Well, this is what we’re going do, and this is when we’re starting,” and X, Y, and Z. That’s not how I practice.

And it’s really important to me that the decisions come from the patient but are guided by me and my team.

Katherine Banwell:

Why is it important for patients to feel like they have a voice in their treatment?

Dr. Preeshagul:

So, that is such a good question. And I think a lot of it comes from the fact that you have a patient that had a completely normal life and all of a sudden get delivered this life-altering news that they have cancer. And everything that they had control over just seems to completely go out the window just in a matter of seconds.

So, making sure that a patient is back in the saddle and has control again and feels like they know what the next steps and feels like they know what they can expect is really important to them from what I can see. And I think that is something that allows them to feel like they’re a little bit more like themselves again.

They come to meet me. They don’t know anything about lung cancer. Their world has been completely rocked. And when they know their treatment plan and they know their stage and they know what to expect and they’re kind of a little bit more on autopilot, I can see in some patients them being able to exhale a little bit and feel like they’re in control again, and they know what – every Monday, I’m going to come and see Dr. Preeshagul. I’m going to get my treatment. I might not feel so good the next couple days, but I know the week after and the week after that, I might feel a little bit better. And they kind of are back in control again.

My MPN Journey, Getting the Best Care After ET and MF Diagnoses

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My MPN Journey, Getting the Best Care After ET and MF Diagnoses from Patient Empowerment Network on Vimeo.

Myelofibrosis and essential thrombocythemia (ET) patient Julia had experience as a health educator and hospital administrator before receiving her MPN diagnosis. Watch as she shares how she later connected the dots from her symptoms and blood work, lessons learned about myelofibrosis patient journeys, and her advice for living well with MPNs.

Related Resources:

 Expert Advice for Learning About Your MPNs Online

 MPN Caregivers: How to Provide Support During Appointments

Transcript:

Julia:

My name is Julia, I was diagnosed with essential thrombocythemia in 2007, and then with myelofibrosis a year later, after routine blood work. The diagnosis came out of nowhere. I was healthy and active prior to my diagnosis and raising five children with my husband. I’ll never forget the day I received a voicemail from my primary care doctor’s office, I really couldn’t believe what I was hearing. I didn’t have time for this illness in my life. I had a bone marrow biopsy that showed I was positive for JAK2 and had a 5q deletion genetic mutation. I started on daily aspirin, and it was a hard pill to swallow for many reasons.

As a certified health educator and former hospital administrator, I understood the importance of treating a rare disease, but I had a difficult time with the idea of taking medicine daily, and I felt like I didn’t have any symptoms. I reviewed my old lab print-outs that showed elevated platelets 15 years before, that slowly increased over time. I recall having severe migraines that would put me out of commission for the day, and tenacious fatigue in the years before, I didn’t connect the dots with the symptoms, and neither did my oncologist. By 2007, my platelets and white blood cells were very high.

I decided to find an expert with extensive experience with ET and MF to get top-notch monitoring and treatment. I connected with a specialist for many years and hope to keep living with my disease for many years ahead. I’ve had several hospitalizations and ER visits over the years, but keep on going. MF has absolutely changed the path of my life and how I live it, but I still do most of what I want to do while I’ve been lucky in maintaining stable myelofibrosis with no true signs of disease progression or serious myelofibrosis complications, it’s important to understand the path for other myelofibrosis patients might be quite different.

My advice for others MPN patients is:

  • Pay attention to how you feel and pace yourself.
  • Keep track of your blood counts, so you can alert your care team.
  • Find an MPN specialist for your care.
  • Don’t forget to be present and spend time with your family.

These actions are key to staying on your path to empowerment

Coming Into Your Own: Receiving Support as an AYA Cancer Patient

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When I was diagnosed with thyroid cancer in 2017 and again in 2021, I wasn’t told about the vast amount of online and in-person support groups or social media tools that were available, much less the Life with Cancer program at the hospital I was treated at. Instead, I found out about them when I decided to be brave and share my story on Instagram and Facebook and prayed for support and positive feedback. And once I did share my story, a whole new world opened up to me. I’m not talking about living as a survivor for the rest of my life, but rather the new family and community of shared experiences, extensive knowledge, and ultimately, the best support I could ask for. 

Adolescents and young adults (AYAs) are often placed into two buckets: they’re either young enough to be placed with pediatrics or old enough to be treated as a full-fledged adult. However, that’s not the reality. As AYAs, we face a lot more than one would think. Maybe we’re in high school or graduating and about to attend college. We’re developing and strengthening relationships with friends and family, and perhaps a significant other. We might be on our parent’s insurance and have no idea how to navigate the stack of medical bills that come with treatment. We have a lot of unmet needs that the healthcare industry is only starting to meet. That’s where social media comes in to help with cancer survivorship. After all, it’s not a “one and done” thing. 

Below are a few social media platforms and support groups/organizations I have found to be incredibly helpful, specifically for AYAs:

  • Facebook – support groups are available for every cancer, and even variants of cancer. I have found that they provide a safe space for asking questions about symptoms, medications, what to expect during and after treatment, etc. (And, of course, venting!) 
  • Instagram – As the saying goes, “A picture is worth a thousand words.” While this platform is usually a highlight reel, showing the rawness of what we’re going through can be very empowering 
  • Twitter – Here, you can find tweet chats, patient advocates, healthcare organizations, and healthcare professionals (doctors, nurses, etc.). Nothing is off-limits! 
  • Pinterest – find recipes for patients going through treatment 
  • Our Odyssey – support group for AYA patients with rare and chronic diseases, including cancer 
  • Stupid Cancer – provides AYA cancer support groups 
  • Elephants and Tea – AYA cancer support group 
  • Lacuna Loft – AYA cancer support group 
  • Cancer and Careers – helps with getting back into and/or leaving the workforce; discusses disability rights 

#patientchat Highlights – Wellness Matters: Risk-Reducing Care

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Last week we hosted a “Wellness Matters: Risk-Reducing Care” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Risk-reducing care? Health maintenance? Preventative care? What term for this topic resonates with you and why?

Connection

Aside from your physical health, how are you currently maintaining your emotional and mental health?

Full Transcript

Shared Decision-Making, Advice for Partnering With Your AML Team

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Shared Decision-Making, Advice for Partnering With Your AML from Patient Empowerment Network on Vimeo.

AML expert Dr. Eunice Wang reviews how shared decision-making impacts overall care by keeping the individual patient and their unique circumstance in mind when determining a treatment path. Dr. Wang discusses the importance of reviewing clinical factors as well as having honest conversations, giving the patient a voice in their care. 

Dr. Eunice Wang is the Chief of the Leukemia Service and Professor of Oncology at the Roswell Park Comprehensive Cancer Center in Buffalo, New York. Learn more about Dr. Wang, here.

See More From Engage AML

Related Resources:

Transcript:

Katherine:

We’ve been hearing a lot lately about shared decision-making. In your opinion, how is this concept best put into practice?

Dr. Wang:

So, shared decision-making is the process where the physician is no longer dictating the care, and telling patients, “This is the best therapy for you,” and just plowing forward with it. Shared decision-making is really what we want in all of our relationships in our lives, which is sitting down and incorporating many points of view, including both the patient’s wishes and desires as well as those that he or she feels is important to his or her care.

It involves time. It does – it may involve multiple clinic visits. It involves sitting back and having the physician say, “This is the information, this is the data. What is important to you? What is going to work with your particular home situation and family situation and dynamic?”, and then, together, coming up with a decision about care that is individualized for the patient. We talked about individualizing the targeted therapy for the biology of the disease.

Shared decision-making is individualizing the treatment decision for the individual patient and their particular circumstance, and that is best done by sitting down with the patient, looking them in the face, not by looking at your phone, or staring at that computer screen, or reading off some diagnosis from a piece of paper. It’s really involving having those honest conversations.

That’s how things used to always be in medicine, is that it always used to be a decision where the doctor and you would talk and come to a decision, potentially. We’ve kind of gotten away from that with all the electronics and technology, and I think the shared decision-making is a conscious effort by individuals and groups to bring that back in case. It’s very important for AML. AML is a disease that affects largely older individuals, so if you’re in your 60s and 70s and 80s, I can tell you right now that each one of those individuals who have lived decades of life have a certain way that they want to live whatever time they have left.

Katherine:

Of course. Well, when considering a treatment plan, what key questions should patients be asking?

Dr. Wang:

They should be asking – it should be – they should be asking, “How is this going to affect my daily life?” They should be asking questions – “Do I have to be in the hospital? How – do I need to come to the clinic? If I have to come to the clinic, how many times do I have to come to the clinic?”

In my part of the world, it – sometimes even the season in which they’re being diagnosed can impact what disease treatment they want because certain times of the year, travel back and forth in different weather conditions can be difficult. They need to be asking not the question of – that we get asked a lot like, “What would you do if this was your father or your mother?”, but I wouldn’t know.

I turn that around and I say, “But, you’re not my father and you’re not my mother, and if you were my father or my mother, I would ask my father or my mother, ‘What is going to work for you? What are your goals? Do you want aggressive therapy? Do you want to go for high risk/high benefit, or do you want something that’s just going to make you be able to be outpatient for longer, and really what is the most important thing for you and your family right now when we look ahead as to the treatment path?’”

Katherine:

Why is it important for patients to feel like they have a voice in their treatment decisions?

Dr. Wang:

It’s important for them to have a voice in their treatment decision because it is their – first of all, it’s their life, it’s their body. They are the ones that are going to be getting the therapy, suffering the consequences, and making the decisions that can impact not only them, but their loved ones, so – and, I find that the more they understand the disease process, the more they understand and can communicate to me their wishes, the more satisfied we are in care. I’ve had individuals tell me early on in the process where maybe, in a different patient, I would have suggested a second or third treatment – I’ve had them say to me, “I’m done. I’m not – thank you very much.” And, we all have to respect that.

It makes people more satisfied with their care. It makes people feel like they are making – they are guiding the path. They’re not just doing what their husband wants or what their doctor wants. I never want to have a patient say, “Well, I went and got chemo, Dr. Wang, because you wanted me to get chemo.” I don’t want you to get chemo, and I feel like if you have that understanding, I think patients are much more likely to pursue therapy and for the therapy, I think, to be successful or not. But, regardless of whether it’s successful medically, it needs to be successful emotionally for that patient and for that family.

What Key Questions Should Myeloma Patients Ask About Treatment?

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What Key Questions Should Myeloma Patients Ask About Treatment? from Patient Empowerment Network on Vimeo.

Myeloma expert Dr. Rafael Fonseca shares specific questions that patients should ask about their treatment plan, and explains how to ensure optimal care for specific myeloma subtypes.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma

Related Programs:

How to Make an Informed Myeloma Treatment Decision

What Can Newly Diagnosed Myeloma Patients Expect When Starting Treatment?

How Will I Know If My Myeloma Treatment Is Working?

Transcript:

Katherine:

What sort of questions should patients consider asking about their treatment plan?

Dr. Fonseca:

I think it’s important that patients understand a few things. They can be described in multiple ways. Number one is, of course, what? What is it that is being used? I think that includes a description of what to expect, the practicalities, the names of the medications, their side effect profile, and what to report when you use those medicines. I think that’s very important because if you’re empowered with that information, you’re going to be better off as you react for symptoms that may come along. I always tell patients when you have a cancer diagnosis, your self-awareness goes through the roof because we’re going to be paying attention to everything, every skin change, every pain we have.

So, I think having a bit of that proactive discussion becomes important as they think about the treatments that they want. I think the how-to on the practicalities are very important. The best where the nursing team and the pharmacists help us a lot too. Do you take the medicines at night? Do you take them with meals? Is there something that you shouldn’t be mixing? How much time would it take for me to get a refill? It’s different to get a medication from a specialty pharmacy versus your down-the-street Walgreens. So, all of those things are important that patients, again, participate in the understanding.

If not them, at least the caregivers that are a part of this team. I think it’s important that patients ask also some brief descriptions of (A) the biology of the disease. If I have myeloma, what type of myeloma do I have? Does that matter as far as what treatments I’m going to be using? What treatment options may be available to me because of my specific subtype? We have subsets of myeloma that have options that are not available to others.

Also, I think it’s important that patients also ask a sense from the physicians as to where they are. I’d like to describe this a little bit more. Sometimes, patients ask us specific questions about, am I in a complete response? Am I in a very good partial response? What is a PFS? Those terms work very well when we talk about clinical trials, but they don’t necessarily describe in a great way the situation for an individual patient. I’d use a lot more objectives than I’d use technical terms when I describe where patients are. I say, “You have an excellent response. You have a very deep response.”

Then I’d provide more details if they want. “Yes, you’re MRD-negative at 10 to the -6.” But sometimes I find that it’s harder for patients to understand where they are if they completely focus on the staging system or the response criteria, etc.

Because maybe a VGPR, a very good partial response, doesn’t sound very good.

But then you can be in a very good partial response for 15 years and it doesn’t matter. You my want to be in an MRD-negative status, but you still have a good outcome. That’s why the general description of the status by a physician becomes important.

Katherine:

Do you think patients should get a second opinion consult with a specialist?

Dr. Fonseca:

In general, my answer is going to be yes. This is not self-serving. I think myeloma has become so complex that trying to integrate at least once, or if not, in some infrequent basis, an opinion of a myeloma specialist becomes important. This is no one’s fault. If you’re a community oncologist somewhere where myeloma represents only a small fraction of your practice, I can guarantee you, you cannot stay on top of the literature. I cannot stay up with everything that goes on with myeloma, even though that’s what I do 100 percent of the time.

I get an email every week with all the articles, all the publications, and I have to integrate that. I have to think, okay, does this matter or not? I go to the professional meetings. I see all the abstracts and I still feel like I’m missing out. How could you do that if that is only a small fraction of your practice? I’m sure that the same applies for other cancers, breast and colon. You can’t move. You cannot uproot yourself and leave your community and your family, but I think there should be ways by which patients at least have an opinion from someone who has more expertise. Fortunately, there are many centers across the nation now that have that expertise for the management of myeloma.

How Can Myeloma Caregivers Provide Support?

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How Can Myeloma Caregivers Provide Support? from Patient Empowerment Network on Vimeo.

Some multiple myeloma caregivers may be unsure or overwhelmed in how to move forward in supporting a patient. Expert Dr. Rafael Fonseca shares advice for caregivers to assist in practical matters, decision-making, and providing emotional support to their loved one.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma

Related Programs:

Who Is on Your Myeloma Healthcare Team?

What Are the Goals of Myeloma Treatment?

What Key Questions Should Myeloma Patients Ask About Treatment?

Transcript:

Katherine: 

We have a question from the audience. This one is from Sarah. Her question is, “What advice do you have for caregivers? How can I be supportive during appointments?”

Dr. Fonseca:

That’s a great question.

I have experienced this both as a physician, as well as a caregiver myself to someone who has had a cancer. I think I’m going to say that there are several roles that caregivers play. Some of them are obvious and I’m going to call them practical or perhaps even pedestrian, you know, organizing the activities of every day. That’s important, but a lot of people can do that. The second role is to be in assistance for the knowledge that is needed for some of this decision-making. Sometimes patients can be overwhelmed, and we need some support and some vetting and peer process from a trusted and loved person so you can go through that.

That is very helpful, but what is essential, and the number one thing is you are first and foremost the loving family member or friend of that individual who is living through a very profound human experience. I think the first role of a caregiver has to be to express that role.

I, myself, reflect on moments where perhaps in a quick, reactive way I wanted to solve some of the immediate practicalities and what was needed most was a direct support. Even if I face a situation today, if I was, again, a caregiver for someone with a serious diagnosis with cancer, I would start with that priority. Number one, you are the support and the loving person. Number two is I will try to provide information. And number three, hopefully you can help with meals and the driving and what have you. But there’s many more people who can come and help in that regard. Not a lot can do the first part.

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

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How Can Myeloma Patients Take an Active Role in Their Treatment and Care? from Patient Empowerment Network on Vimeo.

Expert Dr. Rafael Fonseca explains shared decision-making, and encourages patients to take an active role in their care and treatment to aid in improved outcomes. 

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma

Related Programs:

How to Make an Informed Myeloma Treatment Decision

What Are the Goals of Myeloma Treatment?

Myeloma Test Results and Factors That Impact Treatment Decisions

Transcript:

Katherine:

Yeah. Lately, we’ve been hearing this term, “shared decision-making,” which basically means that patients and clinicians collaborate to make healthcare decisions, and it can help patients to take a more active role in their care.

I’d like to get your thoughts, Dr. Fonseca, on how best to make this process work.

Dr. Fonseca:

We are very fortunate to live in this time of medicine, where ultimately, we recognize that the patient is the person expert. It is the patient decisions that should drive what is to be done in a situation. Whenever I interact with patients, I tell them, “Listen, I’m going to be like your counselor. I will provide you with options of what I think is reasonable. I will go to different degrees of effort in trying to convince you one way or another for a particular intervention. But at the end of the day, I only do a good job if I present you with the options and the pros and cons of those various approaches.”

I weave that into my language on every single conversation we have with patients. I think we’re way past the time where a physician would come and say, “This is what you’re going to do,” or “This is what will happen.” My language always includes, “I would recommend this.”

“I think the next best step for you to consider would be X, Y, or Z.” But ultimately, I look at patients and not infrequently at the person next to them, a family member or a close friend, and I say, “You’re the boss and with the person next to you providing additional support, comment, and guidance, we can together reach the best decision of what should proceed.” I think we’re incredibly fortunate because patients have access to sophisticated information, especially patients that have serious conditions such as would be cancer and, in my case, myeloma.

As an example, when I work with general internal medicine residents that work with me learning about hematology, I sometimes tell them, “You’re going to walk into a room. Are you going to be seeing what I say, this is like a tennis match between professionals. Are you going to see the level of questions that patients are going to be asking me? They’re going to be asking me about the latest study that was presented at this meeting and the P value and this and that.”

“I can guarantee you that you would not have the tools to be able to address all those questions, simply because there’s such an in-depth understanding of the disease.” I realize this is not everyone. I’m giving you an extreme example. There are individuals that need additional support, more resources. But just to interact with someone who has such commitment to understand their disease and to help us by that understanding make the right decision makes my job so much more rewarding.

Katherine:

What do you think is the role of a patient then in their care?

Dr. Fonseca:

I think it needs to be … I’m describing in some detail and there’s a lot to unpack there. Of course, patients are dealing with a very serious diagnosis. It’s okay to have periods where they are in a pause moment and they’re reflecting of what their facing, and that they can gather information from close family members.

I think we, as providers and the medical team, need to deliver a message that provides clear options for them as far as what the best next phase of their treatment or their management might be, including observations or supportive care. But the patient ultimately is a person who has to make that decision. I frequently get the question, and this is not surprising, and it happens all the time. A patient tells me, “What would you do if this was a family member?” I always tell them, “I always talk to you as if you were my family member, as if you were my brother, my mother, my father.

So, I try to live deeply to that fiduciary responsibility I have to your well-being. I recognize that there are circumstances, and that’s part of the finesse and the art of medicine, that I have to help a little bit more walk you through that step. Sometimes, it’s just human that one may want to say, I just want to disconnect. Maybe I’m not the person that wants to go and read in detail. But perhaps I have my daughter or my son who are helping me and understand better where things are.”

I think one of the key aspects of my role is to make sure that I have a sense that the person has a good understanding to be able to make an informed decision. At the end of it all, if the person decides to proceed in such way that doesn’t necessarily align with what I’m trying to do, I’m deeply respectful of that choice. I will go to extra lengths. So, if someone is foregoing treatment, when I know their treatment has a high likelihood of improving their quality of life, relieve a symptom, or improve survival, I don’t think I would do a good job if I don’t present why that’s so important. But ultimately, it is the patient’s decision.

Multiple Myeloma: Danielle’s Clinical Trial Profile

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Multiple Myeloma: Danielle’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Danielle was a very active person – and even went on vacation – right before receiving her diagnosis. Her myeloma journey unfolded with her myeloma symptoms, diagnosis, treatment, and participation in a life-altering clinical trial. “I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure.” 

See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles

Transcript:

Danielle:

Hello, everyone. My name is Danielle.

My myeloma story began in 2011. I was experiencing pain in my hip and my back area, and it was the pain that would come and go.  I was also very lethargic in 2011 and couldn’t understand why I was so extremely tired, so I thought the pain in my hip and back area was due to sciatic nerve, and I just didn’t do anything about it, ignored the pain. My husband and I went on our first trip without our sons in October of 2011, and two days before the trip, I developed this really bad nasty pain in my hip and leg area, which actually altered my walk, but I had no idea what the heck was going on, and so I was so frustrated that I… As soon as we got home, I went to see an orthopedic doctor because at that time I was working out like five times a week, so I thought maybe I pulled something, a pinched nerve or something. So I went to see him, he took X-rays, I believe it was an MRI, couldn’t be sure, but when I went back to get my test results, he sat me down and said, “Mrs. Spann, there’s a mass here in your fibula, and I’m going to recommend you to an orthopedic oncologist.” So, that was the very beginning of my diagnosis, initial diagnosis. Of course, I was in denial because I’m like, I knew what an oncologist was, but he must not be talking to the right person, but I went ahead and I met with the orthopedic oncologist. He ran a bunch of tests and mentioned to me that I had myeloma, which is concentrated in one area, which was my fibula, and then he recommended that I have my fibula removed on my right leg. Two days before surgery was scheduled, I received a phone call from his office, saying, “Mrs. Stann, you have lytic lesions all throughout your skeletal structure, and we’re recommending that you go see a bone marrow transplant oncologist.” So now it’s becoming real. The diagnosis is what it was, and I just wanted to know how I could basically fight this. I’m the type of person where you tell me one thing and let’s try to find a solution, so I met with the bone marrow transplant specialist, the oncologist, and then we formulated a plan, and that plan was for me to go on my first study trial. And so that was my introduction into my having multiple myeloma.

I made the decision to participate in a trial, because I trusted my doctor. He had the expertise to understand where my myeloma was, the counts, how aggressive it was, and he recommended that I go on the study trial. He also told me that if the study trial was not going to work for me, or if it wasn’t helping me, that he was going to take me off the study trial. So, I was on the study trial from like January to March…to the end of March, and he sat me down and said that it was not working, my numbers weren’t really moving, and that he was taking me off the study trial. And he took me off the study trial, there were some other treatments that were involved, and then I had two stem cell transplants. After the transplant in 2012, I went ahead and started another treatment regimen, and I was on that for several years, which worked well. My numbers were coming down, but then unfortunately they started going back up, so he mentioned that I should go on another study trial.  I weighed the odds, and I knew that he would not lead me down the wrong path. So, I went ahead and I participated in the study trial that I’m still on today, and I’ve been on it for about three, four years.

I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure. And so that’s what I wanted to help in some form or fashion, and when I first was diagnosed going to the Winship Cancer Center twice a week, there was a quote that was posted in the cancer center, and that quote was by Dr. Martin Luther King Jr., the quote read, “Life’s most important and persistent question is, ‘What have we done to help others?’” And I would go into the center and I’m like, “Yeah, what have I done to help others?” And me participating in the study trial, I felt like I’m helping others indirectly, and it wasn’t always just about myself, it was, “Okay, yes, the study trial gives the data, and it’s helping me, but it’s also helping that next person as well.”

So, I always look at my life as before diagnosis and after, and my after does not look like my before, I can’t do the same things, I can’t do the same things that I used to do. And one of those things is going to the mall and being in there like 10 hours, that’s so remedial, but it just goes to show like I cannot exert myself the same type of energy that I could before diagnosis. And again, that’s my new normal.  I stay positive with everything in life, things happen, but you just have to do what you can to make it better, no matter what it is.

I am happy and proud and so grateful and thankful to mention that as of January 2021, my myeloma is 0% detectable, which means there’s no presence of multiple myeloma in my blood, in my urine, nor in my bone marrow. And so I’m still on a study trial, and I have two different chemo meds that I have to take, and I just act accordingly if I know that one of the chemo meds that I have to take twice a week gives me an upset stomach. I just accordingly in finding different ways to push through it. It is what it is, and my motto when I was having my bone marrow transplants was, “This too shall pass.” And so no matter what I’m going through in life, no matter how down I get. This moment will pass. And so tomorrow, you’ll look back on today and say, “You know what, I did it, I made it.” And you’ll do that for the next day, until you realize that you’re just constantly defeating that previous day, and you’re moving forward.

So, I’ve heard the terminology of a clinical trial, never really paid attention to it because I never had to…I had an idea what the clinical trial was. But once it really came home to me, I realized that, in my words, the clinical trial is collecting the data necessary, they’re going to give you the trial medication, because they’re looking to get this, this medicine approved to put on the market. These medications would not get approved by the FDA, acetaminophen (Tylenol) at one point had to go have a study trial and then get approved by the FDA and then can be distributed to the masses. And so it’s the same with these other drugs. We need individuals to participate positively, knowing that if this is not helping me right now, it will help someone in five years, in two years, in 20 years. The advice that I would give is to trust your doctor, your doctor would not recommend a study trial if he felt that there was a medication that’s already on the market that would help you better. If the study trial you’re on is keeping you with your family, and at the same time is…the scientist, the researchers they’re gathering all this data, it could come to be an actual medication in three, five, seven years. And so just think of it as something that you’re helping society…and your fellow…and your fellow man.  

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile

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Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Triple-negative breast cancer patient Stacy was diagnosed by a breast cancer surgeon she works with. Watch as she shares her journey through diagnosis, her decision to join a clinical trial, her experience with treatment, and her current feelings about clinical trials.

See More from Patient-to-Patient Diverse Breast Cancer Clinical Trial Profiles

Transcript:

Stacy:

I was diagnosed by a medical provider that I work for, she’s a breast surgeon, and once I was diagnosed, because I’m in the environment of breast surgeons and breast multi-discipline providers, my care was probably handled a little differently. So, I was referred to an oncologist who then introduced me to the clinical, the breast clinical trial that was available. I actually didn’t have a lot of questions except for will it help others? And he said it would, it’s for triple-negative diagnosed patients. The trial is an additional drug that helps with the triple-negative, and it has been provided by the FDA. So, because of that, I was willing to do it. My only pushback was that the treatment was every week compared to it being every two weeks or three weeks. The first phase…for me was…I had no problems with it. Actually, after treatment, I was up for 48 hours, which allowed me to do a lot of things – house work, part-time job, working remotely, it just afforded me things that I would not be able to do for being tired.

I always have had my screens, and I’ve had diagnostic mammograms and they always came back normal, so negative. And this particular time, I had Dr. Hampton to just look at it, it just felt like a cyst. I wasn’t really concerned with it. So Dr. Hampton did look at it, we thought initially that it was a cyst and not infected, but two weeks later that what felt soft then became very hard and round, oval-shaped. I was just…in two weeks, it was already hard. So I said, okay, so I had her to look at it again, and from there she said, You need to have this worked up.” And then from there, I went and had another diagnostic mammogram, and the next day I was scheduled for a biopsy by the top radiologist. And he said, “Stacy, I think that you need to have an MRI.”

Right, and so I had an MRI, had a CAT scan, all that was done within two weeks, and they tell me that I had cancer. Dr. Hampton…this is kind of funny because the staff scheduled my appointment, as I am the manager of the breast center. They scheduled my appointment. I met with her, and she let me know that I was triple-negative and that it would require chemo as well as radiation and surgery. The following week, I was scheduled for chemo.

Once I spoke with the oncologist, he said he employed me to look up the trial, and it would be beneficial to others. I initially was not that excited about the trial, I reached out to others who were triple-negative here in our office to ask and what they thought about it. One of the patients/friend, she already knew of the trials, she gave me three different trials that were going on right now. And one of them happened to be the one that he suggested that I should participate in, and she just basically said we would be helping…that I will be helping others to participate in it. So I thought about it for about two or three days, and then I decided to participate in it. Now initially, I wasn’t so keen on it, but after hearing about helping others and that it was mostly, I was told that it was almost like a miracle, medicine that helped triple-negative. And I decided to do it.

During my trial, the lump that I felt once I started on a trial treatment in three weeks, the lump was gone. And each week it wasn’t completely, but it reduced itself in three weeks. And as I continue with the treatment, we couldn’t feel it. I had my provider that I was seeing, the oncologist, and each week it was almost like it was gone, it was totally amazing because prior to that, it probably…it felt like the size of maybe a large, grape, but it just in three weeks, it was totally a big difference. So, I know that the trial is good. It has to be because in three weeks or something that I’m thinking probably grew in six weeks, whereas I was able to feel it, I couldn’t feel it anymore, and that three to four, it was gone.

So prior to being diagnosed, there were a multitude of things that I did not know. Working for a breast surgeon, where we see those patients and then becoming one of those diagnosed patients are totally two different things. What I thought I knew, it became apparent that I didn’t know, and there were things like the metallic taste that you have in your mouth, you can no longer use metals, anything, utensils…you have to use plasticware. The neuropathy that you feel in your hands, it’s hard to pick up anything that’s metal, the feeling just kind of goes through your hand, that means keys, that’s a door knob, you just have to kind of suck it up and do what you have to. The tiredness, but they don’t let you know that you’ll feel exhausted. That’s totally different from tired. So once you’re diagnosed, you have to see a multitude of providers, specialists, you have imaging that’s done, and the team that I have had done most of that for me, so I have a great support team.

Life today is, I have my up and down days, for the most part, my days are good. Once I have my treatment, my first phase went so well, I wasn’t tired. I was still doing things that I normally do with the exception that I had gained a lot of weight. So my second trial started about four weeks ago, and it hit me very hard, I was so exhausted, I have never in my life been that exhausted, that…taking two steps, and I felt like I had ran a marathon. With me being so independent and knowing or wanting to be around my team, I forced myself to come into work, and the second trial also brought on bone pain, muscle pain, headaches, and again, I was just totally exhausted from it.

What you have experienced or endured at the time, during a clinical trial and expressing it, it can only help the next person. But, in essence, I think the clinical trial is not in that only to help someone else, but it’s also to help you…I think the knowledge of just knowing that you’re a part of something that could be enhanced or approved or just help you with your health is a plus. So, working with a breast surgeon and working with multi-discipline providers that’s on the team, oncology radiology, technologist, and seeing the impact that it has on patients, I wanted to participate in the trial because again, I knew that it would help people. So just being a part of that environment definitely impacted my decision in participating in the trial. With the scientific studies that they have out there with the trial, it can only make the research for us better.  

How Can Lung Cancer Patients Take a More Active Role in Their Care?

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How Can Lung Cancer Patients Take a More Active Role in Their Care? from Patient Empowerment Network on Vimeo.

As a lung cancer patient, how can someone take a more active role in their care? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya provide advice for patients to empower themselves and questions to ask themselves about their lung cancer care team members for their best care. 

See More from Best Lung Cancer Care No Matter Where You Live

Related Resource:

Transcript:

Dr. Nicole Rochester: 

What advice do you give to patients that you see so that they can feel empowered, Dr. Okusanya? Is there any specific advice that you give when you see patients and things that just helped them to take this active role that you’ve been describing? 

Dr. Olugbenga Okusanya: 

Number one, I tell patients to bring someone with them to their appointments, someone who can stand by as within reason someone who can be there to listen as well, because usually I say, if I tell you 100 things in an appointment which can legitimately have, I could give you 100 unique points of information and in one 45-minute visit. If you catch 30 of them or 35 of them, you really understand that. I think that’s a lot because they’re very emotionally charged. So, hopefully someone else is with you, maybe catches another 30 or 40, and that gets you to a point where you can really sit down later and understand. I encourage patients to take notes to write things down, and if they want to, to record, to have audio recording of the session, I wouldn’t say anything to you now that I wouldn’t say in a month or in a year, or anywhere else. I’m going to tell you exactly what I think and I…and if I have uncertainty, I will expose that uncertainty, I will let you know that this is a case that could go either way. And this is a piece of information that I’m looking back and forward between these two options and that really helps the patients later on go back and say, “Did I really hear that right? Did I really understand it right?” So that you can feel like you’re getting the best care, and I really think that you have to make sure that you feel comfortable with the provider. 

I think that’s just the number one thing. Are you happy with them? Do you like the way they comported themselves? Did you like the way they spoke to you? Did you like their staff? Also remember, you’re likely going to be interacting with their staff as much as you interact with the physician, so the other people in the office, the front desk people, the nurse practitioners, the medical assistants, those are the people that you’re going to spend a lot of time talking to. Did you have a good rapport with them? Also, all that stuff counts to make sure that you’re getting the best experience possible and that you can really be an advocate for yourself. 

Dr. Nicole Rochester: 

I just want to reiterate, you share so many pearls today, but I just want to reiterate a few of them, and they really resonate with me as a former caregiver and as a health advocate, but that’s the importance of asking questions, the importance of bringing a buddy, and I appreciate that, particularly in your field, when we go into a doctor’s office and the word “cancer” is stated, everything else goes out of the window, and even in less threatening situations, there’s data that shows that…I think about 20 percent to 25 percent of what we say as physicians is actually retained, so certainly when you get a bad diagnosis, that number is even lower, so bringing somebody with you who is not necessarily emotionally detached, but they can literally kind of be the note taker, and they may even pick up on some nuances and things that you may have missed as a patient is so incredibly important. I love that you’ve offered the option of recording, I think that’s also another tool that many patients and family members aren’t aware of, and I think there’s an assumption, and it’s true to some degree that doctors don’t want to be recorded, but knowing that that is an option. 

The fact that the care that we receive really is impacted by whether or not the person specializes in lung cancer, a thoracic surgeon, and being empowered to ask that question, “Is this your specialty? How often do you see patients like me?” And being empowered to ask those questions that ultimately won’t lead to improved care is just so incredibly important, and I think just everything that you’ve shared that really allows the patients and the caregivers to understand just how important their role is you’re the one that’s going to take out the cancer and you’re the one that’s going to get them better, but there are so many things that happen before that step, before they are on that operating room table that is so important 

Dr. Olugbenga Okusanya: 

I think for patients and their advocates, I think it’s really important number that you’re putting together a health care team. You’re putting together a group of people like the avengers. You’re putting together a bunch of people to come together to help you deal with this health problem. You are entering into a therapeutic relationship, so that relationship has to be healthy in order for you to have the best possible outcome, you should feel good about, you know, your doctor is going to be very skilled, become very knowledgeable, and just like we talked about before. You really want to find someone who has the heart of a teacher, someone who can sit down and explain it to you in a way that’s going to be digestible and that is going to be actionable. So, I think if patients and advocates remember that you want to build a really solid, a really healthy relationship with someone who’s going to help you take care of your health, I think if you do that, you’re going to be in excellent hands.