Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns

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Myeloma Support and Resources | Why It’s Essential to Voice Your Concerns from Patient Empowerment Network on Vimeo.

Why should you speak up when it comes to your myeloma care? Dr. Sikander Ailawadhi discusses the importance of sharing issues with your healthcare team in order to access support and resources that can help. 

Dr. Sikander Ailawadhi is a hematologist and oncologist specializing in myeloma at Mayo Clinic in Jacksonville, Florida. Learn more about Dr. Ailawadhi.

Related Resources:

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

 Myeloma Symptom Management | An Expert’s Approach

Myeloma Symptom Management | An Expert’s Approach

Transcript:

Katherine:

I would like to talk more about self-advocacy, Dr. Ailawadhi, managing the worry associated with a diagnosis, concerns about relapse, side effects. It can lead to emotional symptoms like anxiety and fear for many. So, why is it important for patients to share any worries they’re having with their healthcare team?   

Dr. Ailawadhi:

Yes.  Extremely important. See, nobody’s thinking, “Okay, I’m going to have cancer today.” Nobody’s prepared for it ever. Cancer is always a diagnosis that comes out of the blue, blindsides us, and then suddenly we have to change the rest of our life because of it.  Not only our life, our caregiver’s life, family’s life, everything changes.  

So, it is okay to admit that it is difficult. It is okay to admit that we need help. And, Katherine, I like your kind of the use of the word, self-advocacy, although I want to qualify it.  

A lot of times we say patients got to be their own advocates. But if a patient doesn’t know what to ask, they’re going to be lost. My thought is it is okay to – the first and foremost that a patient or their caregiver can do is please report your symptoms or how you’re feeling.  And those symptoms could be physical, those could be psychological.  Please report what are you feeling, what are the symptoms. On a drug, what are the side effects, et cetera, so that your healthcare team can try to address them. Don’t ever assume, “I am on chemotherapy. I should have diarrhea.”  No. Don’t think, “I’m on chemotherapy. Other patients outside in the waiting room look sicker than I. I feel embarrassed to ask a question.”  

We hear this so many times. A lot of patients will say, “I feel embarrassed to ask that I’m going through this symptom, because I see sicker people outside.” Yeah, but know when I’m with you as a patient, you are it. I’m not thinking about anybody else. And I don’t want anybody else’s decision to obscure or cloud our relationship at that visit.  Please report your symptoms. Please ask for help. 

To me, that is good enough self-advocacy. Self-advocacy is not saying, “I should get this treatment, not that treatment.” But self-advocacy could mean, are there clinical trial options?  I know I live far away from a large center. Could I get a tele-visit with a large center? Could I get a second opinion from someone? Those are all very, very reasonable questions, and by asking those questions, a patient is advocating for themselves.  

Katherine:

As you alluded, there’s a whole healthcare team working with each patient, and there’ll be people on that team who can help support a patient’s emotional needs.  So, one thing that’s on the mind of many viewers is the financial aspect of care. And you mentioned that earlier everyone’s situation is different, of course, but where can patients turn if they need resources for financial support?  

Dr. Ailawadhi:

Very important question. I can tell you every day when I come into my office, my nurse has a stack of documents ready for my signature.  Every single day. Today, there was only one, but there could be different numbers. And these are generally from foundations from diagnosis confirmations, et cetera. Things that we are filling on and signing on behalf of our patients so that they are able to receive resources, whether it’s from a pharmaceutical manufacturer, a foundation, or society that has funding available, et cetera. I should start by saying, Katherine – and I feel embarrassed to admit this, but I should start by saying, I may not have all the answers for my patient during that visit.   

But I think the very important piece where we can start is asking the patient, “Is this causing any financial strain on you?”  As I mentioned earlier, we don’t think about, “Oh, I’m going to have cancer today. Let me prepare for that.” Or “I’m going to have cancer five years down the road. Let me prepare for that.” We’re not always ready for this. It’s okay. It’s important for me to ask if there is a problem, and it’s important for the patient to admit there’s a problem or say, “Well, I’m having difficulty with copayments.” And whatever may be difficult for one may be okay for the other. So, I shouldn’t assume.  So, that discussion must happen.  

Generally, in our setup, what happens is if the patient brings up a concern, if I identify a concern, or if we think something may be going on, but we’re not very sure about it, we tend to bring in our social workers. The social workers are typically the ones who are able to do that discussion with the patient, talk about what are the resources available. What are the foundations that we can apply to?

We have patient navigators who can do the similar things. So, the patient navigator, social worker, there are different individuals who will be able to provide much more granular information. I also strongly suggest patients to join support groups.  

There are lots of resources, which I may not be aware of during our visit with a patient, but I can connect to the social worker, their patient navigators, and online support.    

Myeloma Symptom Management | An Expert’s Approach

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Myeloma Symptom Management | An Expert’s Approach from Patient Empowerment Network on Vimeo.

How are myeloma symptoms and treatment side effects managed? Dr. Sikander Ailawadhi discusses the importance of addressing symptoms, management approaches, and the necessity of communication between the patient and their healthcare team to ensure optimal care. 

Dr. Sikander Ailawadhi is a hematologist and oncologist specializing in myeloma at Mayo Clinic in Jacksonville, Florida. Learn more about Dr. Ailawadhi.

Related Resources:

Understanding Myeloma Testing and Monitoring | An Overview

Understanding Myeloma Testing and Monitoring | An Overview

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

 Available Myeloma Treatment Options for Patients | An Overview

Available Myeloma Treatment Options for Patients | An Overview

Transcript:

Katherine:

So, the symptoms of myeloma, as well as the side effects of certain medications, can vary greatly among those being treated. How do you approach symptom management with your patients?   

Dr. Ailawadhi:

It is extremely important that we focus on the symptoms, whether it’s coming from the disease or it’s coming from the treatment. Because frankly, if a person is responding to the treatment, you want them to stay on the treatment for a longer duration of time, so the disease can stay controlled.  If we don’t handle the symptoms from the treatment or the side effects that are happening or if the disease is causing too many symptoms, it is more likely that either we’ll start cutting down the drug too much or stopping the treatment, et cetera, and then the disease just comes back. In some cases, that is necessary, but generally we would like to modulate the treatment or address the symptoms.  

So, one important piece that we should do, or at least we try to do over here, is that every single time that we talk to the patient for any of the visits – while there is enough time spent on, “Well, these are your labs, your diseases responding markers, SPEP, and M spike, and light chain,” and all that stuff – we spend a lot of time asking about symptoms.  

It is, I understand, challenging to cover everything, but to familiarize what drugs cause what kind of symptoms, and at least making sure that we ask those from the patient.  For example, IMiDs like lenalidomide (Revlimid) can cause some diarrhea, can cause fatigue, can cause sleepiness. Well, I must ask about diarrhea from all my lenalidomide patients.  

Bortezomib (Velcade) can cause neuropathy.  It can give rise to shingles. I must ask my patients for every bortezomib-treated patient. “Hey, do you have any neuropathy numbness, or tingling?  

Are you taking your medication to prevent shingles, et cetera?” I’m just saying we may not be able to do a comprehensive review of every single symptom from every single patient, but whatever the target side effects are important to know every single time. We educate the patients about these side effects so that they are aware of them, and they can report these side effects. And then, if the side effects are happening, any symptoms are happening, then is it to the point that we need to stop the treatment?  

Frequently, we do take drug holidays for a few weeks just to make sure, okay, we know is it coming from the drug or the disease? And every now and then, we realize, well, the drug was not even causing the symptom, because we stopped it, and the symptom stayed. Or so then, why stop the drug? There’s no point stopping it if I can’t control the symptom.

So, understanding whether it’s coming from disease or drug or something else, addressing them, making the changes appropriately to lower the dose, space them out, et cetera. All of that is done. And of course, like I said, importantly, educating the patient is so very important. I’ll add one quick thing. We focus on the drug-related effects.  

As you rightly mentioned, Katherine, the disease itself can cause a lot of symptoms. So, generally, when I see a new myeloma patient, in the first couple of visits, we’ve done all the testing, we’ve discussed the treatment, and we’ve addressed some of the basic symptoms like pain, for example. That is big in myeloma.

But then, when the patient has started treatment, generally within the first two months, the focus that our clinic has is we need to control any side effects, and we need to address any symptoms that are being left over from the disease. And that’s when we start referring patients to interventional radiology for any bone procedures or palliative care for pain control or neurology for neuropathy, whatever so that we are controlling all the symptoms.  

And that’s when we hopefully get the patient as close to their baseline as possible.   

The Benefits of Shared Decision-Making for Myeloma Care

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The Benefits of Shared Decision-Making for Myeloma Care from Patient Empowerment Network on Vimeo.

Why is working WITH your myeloma care team to determine a treatment plan so important? Dr. Sikander Ailawadhi reviews the benefits of the concept of shared decision-making and explains how myeloma treatment goals affect a patient’s care plan.

Dr. Sikander Ailawadhi is a hematologist and oncologist specializing in myeloma at Mayo Clinic in Jacksonville, Florida. Learn more about Dr. Ailawadhi.

Related Resources:

Understanding Myeloma Testing and Monitoring | An Overview

Understanding Myeloma Testing and Monitoring | An Overview

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

 Available Myeloma Treatment Options for Patients | An Overview

Available Myeloma Treatment Options for Patients | An Overview

Transcript:

Katherine:

So, when it comes to choosing therapy for myeloma, it’s important to work with your healthcare team to identify what might be best for you. How would you define shared decision-making and why is this so critical to properly managing life with myeloma?  

Dr. Ailawadhi:

Excellent question, Katherine. Shared decision-making or a process in which the physician, the health care team, and the patient, their caregivers, everybody comes together, shared, to make a decision that we feel is in the best interest for that patient at that time. That is the whole concept.  

Whenever we think about treatment decisions, in our mind, the three main components that have to be considered every single time. Not just newly diagnosed or relapsed or third line or whatever, every single time a treatment decision has been taken, we must consider patient-related factors. What is their preference? What are their goals? Do they have caregiver support? How far do they live? Do they want IV? Pills? Any side effects that are there?  

Comorbidities? Other issues? Financial conditions? Everything comes into play, patient-related factors. Then, there are disease-related factors. How fast is the disease growing? Is this new? Is this old disease, high-risk, low-risk, or standard risk? Or what has been given before, et cetera. So, patient and disease-related. And the number three is the treatment-related factors. What is being considered for the patient? What are the ins and outs, pros, and cons?   

All of this has to be laid out in front of the patient and preferably also their caregiver if the patient has someone who they can share their decision with.  

And when we put all of that in the mix, we come up with a decision which is hopefully in the patient’s best interest. They are more likely to go through with it. They are informed. They are involved in their care. And then, hopefully, if the patient starts on a treatment that they are interested in, knowledgeable about, and committed to, we’ll be able to keep the patient on that longer term and get the best benefit out of it.  

So, in my mind, the main reason for shared decision-making is to make sure my patient is committed to that treatment. They understand that treatment. And we make this kind of bond between us as clinicians and our teams and the patient and their home team, their family team, their caregiver team so that everybody is working together with a singular goal. Right treatment for the right patient at the right time because it must be patient-centric, not research or clinician, or drug-centric. 

Katherine:

What are myeloma treatment goals, and how are they determined?   

Dr. Ailawadhi:

So, I think the myeloma treatment goals can be very different depending on what vantage points you’re looking from. My treatment goal is to provide the best treatment for my patient that has least side effects, gets a deep control, and my patient’s able to live long with a good quality of life. Okay. But that’s my goal.  I need to figure out what my patient’s goals are, and sometimes our patient’s goals are very different.  A patient’s goal might be that they want to really avoid side effects. Well, they want to live, lead their quality of life, and keep traveling. And this happens on a day-to-day basis.  

Just the other day, one of the patients said, “Well, I really want to keep driving around in my RV with my wife, because that is what we had wanted to do at this point of our life. What can you do to help me control my disease, but keep me driving my RV?” And we literally had to figure out where all they were traveling. We identified clinics close to them and connected with physicians so that they could continue their treatment wherever they were. So, the patient’s goals are very important, and in fact, I would say they are paramount. So, understanding what the patient wants. They may be wanting to control pain. They may be wanting to just live longer.  

They may be wanting to delay treatment so that they could watch their daughter’s soccer game. I’m just saying that the goals can be very different. It is important to lay them out. Every time you’re making a treatment decision, the goals should be laid out into short-, mid-, and long-term goals. I should bring my goals to the discussion. The patient should bring their goals to the discussion, and we come up with whatever is the best answer for them that suits them.  

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

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Accessing Quality Myeloma Care | Advice for Overcoming Obstacles from Patient Empowerment Network on Vimeo.

How can you access the myeloma care that is best for YOU? Myeloma specialist Dr. Krina Patel shares advice for patients, including the importance of a second opinion and key questions to ask your doctor regarding your disease and treatment plan. 

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Krina Patel.

Related Resources:

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

 Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care?

Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care? 

Transcript:

Katherine:

What hurdles to patients face when accessing quality overall myeloma care and what can be done to get over these obstacles?  

Dr. Krina Patel:

I talk about this a lot. 

So, again I think the biggest problem for me is that because myeloma care changes so fast, which is a good thing that we have all these options and we have so many new therapies, it’s really hard for people who don’t do just myeloma to keep up. I don’t think I would be able to. I don’t do breast cancer. I don’t do other cancers, so when I take my boards every 10 years, I have to learn a lot to take those.

So, it’s just a part of the system that this the problem. So, I think if you’re seeing a local oncologist that sees five myeloma patients a year, they’re gonna be stuck on what was the treatment when they did it last time for that last patient, which again might be very different now because things change so fast. 

And so, again, you want to get to a doctor quickly, and I understand that. When people hear “cancer,” they’re like “I gotta get treatment. I gotta go fast.” But part of it is, if you need treatment quickly to get to your doctor. But then, try to make a second-opinion appointment done, even virtually because we can do that now after COVID; we have so many more options for that.  

And get that second opinion just to say “Is this the right therapy for me? Going forward, what should I do?” So, patients, “Should I get a stem cell transplant?” if you’re newly diagnosed or not. “What kinda maintenance should I be doing? Do I have high-risk disease or not? What are the nuances of my myeloma versus everybody else that we need to be careful about? Should we dose reduce?” There’s a lot of those types of hurdles. Patients, if they have kidney failure form their myeloma, we should be decreasing the dose of some of the medications; those types of things that really we can help with to make sure those outcomes are in the best. 

And that first treatment really does matter so that we can reverse as much as possible, for patients who have kidney involvement versus bone involvement, to decrease the pain really quickly. Do we need to get our radiation doctors involved to get radiation to help make sure you don’t get a fracture from a potential bone lesion. So, I think, again, I understand the urgency of seeing somebody, of getting diagnosed, and starting therapy.   

But quickly get to a second opinion so that they can help. And then, again, some of these patient advocacy groups are amazing for myeloma. And I think there’s just so much information there that you don’t want to get overwhelmed, but at the same time you want to start going a little bit at a time at those things so that you can learn more about what you need to be asking and doing.  

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

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Key Advice for Myeloma Patients | Questions to Ask About a Care Plan from Patient Empowerment Network on Vimeo.

How can newly diagnosed myeloma patients be proactive in their care? Dr. Krina Patel shares key advice for patients, including the importance of making notes before office visits and the role that a care partner can play in overall support. 

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Krina Patel.

Related Resources:

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

What Is the Role of Bispecific Antibody Therapies in Future Myeloma Care?

 Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

 Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care?

Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care? 

Transcript:

Katherine:

For newly diagnosed patients, what key advice would you share with them? And are there specific questions they should be asking their doctor about their care plan? 

Dr. Krina Patel:

Yeah. So, I know it’s hardest for newly diagnosed patients. Most people have not even heard what multiple myeloma is. They’re learning how to spell it correctly and making sure it’s not melanoma. And this is a conversation I have with so many of my new patients that I think it’s really hard your visit, and maybe even your second visit, to ask all the right questions. So, really, coming home and every time you’re on a treatment or you’re talking about a treatment and you have a question, write it down because I know it’s really hard when we’re only there for 15, 30 minutes to talk to you.  

For us, we have MyChart, so my patients will send questions as they think of them through that. And I think that’s really important. Sometimes it’s hard to know what questions to ask when you have no idea what’s about to happen, and that’s okay. But I think as you’re going through therapy, really making sure that you ask about alternative therapies that might be available and why someone is picking one versus the other, making sure you know what supportive medications you really need.

And I will say that, with myeloma, a lot of our treatments are patient-friendly but they do cause side effects and infections, so, we have a lot of supportive medications we use; so, again, anti-shingles, potentially if you could get a blood clot, we have you on some type of blood thinner.  

We have people on against steroids because of all of our initial therapies have steroids. We wanna make sure you don’t get ulcers in your stomach, so we have patients on proton pump inhibitors. There’s a lot of things we do to again decrease that toxicity. So, that’s important.  

And then, I think the next part is when you’re on treatment, whatever symptoms you’re having keep a log of that. Some things are, okay, maybe it’s just a little bit here and there, that you’re feeling fatigued but then you’re better. But there are certain things that cause a lot of side effects that my patients sometimes don’t tell me about. So, the steroids can cause major insomnia for some of my patients where they don’t sleep for three days, and that’s not okay. We can decrease those.

So, there are ways to manipulate the treatments as we’re going through to make sure that not only are you having a great response but that you’re not having major side effects that are actually gonna hurt your health down the road. So, really important to discuss those things that you’re having as you’re going through.  

Katherine:

There’s also the importance of a care partner in your life –  

Dr. Krina Patel:

Yes. 

Katherine:

– right?  

Dr. Krina Patel:

I agree. So, I joke with my patients but it’s real; there’s actually a study that shows that men with three and a half women in their lives do much better in healthcare in general than those who don’t. So, I’m like “Go get more women in your life” – 

Katherine:

I love that.  

Dr. Krina Patel:

– or just caregivers in general.  

Men are great caregivers too, but really having someone there that can listen for you and write down those things because it is overwhelming. And when you’re on treatment there are a lot of times when you just can’t pay attention. You can’t focus. You can’t listen to everything. And so, the more people that are there, they’ll pick up other things.

So, a lot my patients will even have their loved ones on their phone with them, even if they can’t be there in person so that they can record. And a lot of my patients will record things and they’ll ask me; so, definitely as whoever you’re talking to if it’s okay to record. But most of us will say “Yes, it’s completely fine” so that you can listen to it again when you go home.