How to Make an Informed Myeloma Treatment Decision

How to Make an Informed Myeloma Treatment Decision from Patient Empowerment Network on Vimeo.

When faced with several treatment options, how can you decide on the best therapy for your myeloma? In this explainer video, Sandra and her doctor walk through important considerations when choosing a plan, and provide advice for partnering with your healthcare team.

Download our Myeloma Office Visit Planner to help you have productive conversations with your healthcare team, here.

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Transcript:

Sandra:

Hi, I’m Sandra. Nice to meet you!

Several years ago, I was diagnosed with multiple myeloma. I had bone pain and felt very tried so I went to see my doctor – my bloodwork indicated that it may be multiple myeloma and I was referred to a hematologist.

After a series of tests, my diagnosis was confirmed. I was overwhelmed when I learned that I had a blood cancer, but my hematologist, Dr. Reynolds, told me more about the condition and how it’s managed.

Here’s Dr. Reynolds – she can explain it further.

Dr. Reynolds:

Hi! I’m Dr. Reynolds, and I’m a hematologist specializing in the care and treatment of people with myeloma. The different types of myeloma are:

Monoclonal gammopathy of undetermined significance or MGUS (pronounced em-gus or M-Gus). MGUS typically has no signs or symptoms and is characterized by an abnormal protein in the blood or urine.

And, smoldering myeloma, which is a very slow-growing type of myeloma. It also does not present with symptoms. Patients with smoldering myeloma have a higher chance of needing treatment, so blood and urine studies are ordered regularly.

Last is multiple myeloma. Multiple myeloma is a buildup of plasma cells in the bone marrow that crowds out healthy cells, causing symptoms and other problems in the body.

Sandra:

As part of my diagnosis, Dr. Reynolds ordered a series of tests that included a blood test, bone marrow biopsy, urine test, and imaging.

Dr. Reynolds:

That’s right. We also did additional testing to identify any specific chromosomal or DNA abnormalities to get a better understanding of the genetic nature of the myeloma cells. The results of these tests helped us learn more about the extent of Sandra’s myeloma, her prognosis, and which treatment plan could be most effective.

Sandra:

After I was diagnosed and we had all of my test results, I met with Dr. Reynolds, and she walked me through the goals of treatment for my myeloma.

Dr. Reynolds:

Right! First, we talked about the clinical goals of treatment, which are to slow the progression of the disease and to induce remission.

And, it’s important to note that because each person’s myeloma is different, they are treated differently – be sure to discuss the specific goals of YOUR myeloma with your doctor.

Sandra and I reviewed the effectiveness of each treatment option, including how treatment would be administered, and took all of her test results into consideration to make sure we found the best, most personalized treatment option for her myeloma.

Sandra:

Next, we talked about another key treatment goal: symptom management. Dr. Reynolds asked me to let her know about any symptoms that I experience.

Dr. Reynolds:

Exactly, Sandra. A significant change in symptoms can indicate that it may be time to adjust treatment, if the symptoms are due to the prescribed medication, or that the disease might be changing.

Common symptoms may include fatigue or weakness, loss of appetite, excessive thirst, and weight loss, among others. This is why it’s important to not only have lab work and regular visits with your hematologist, but it’s essential to share about any symptoms you may be having, even if you don’t think it’s related to your myeloma.

And, last but not least, we discussed the most important treatment goal: Sandra’s goals. Sandra let me know that she’s very social and enjoys traveling and spending time with her family – we wanted to make sure she could continue doing the activities she loves.

Sandra:

Then, Dr. Reynolds reviewed each of the treatment approaches with me, including potential side effects and how it may impact my lifestyle. We discussed the pros and cons of each option, and we went over what our next steps would be if the treatment plan needed to be adjusted.

Dr. Reynolds:

Exactly! When deciding on therapy, you and your doctor may also consider:

  • Your age and overall health,
  • Any presence or history of other medical problems, and
  • The financial impact of a treatment plan.

Sandra:

In addition to asking questions, my sister, Beth, took notes during our appointments, since it was often hard for me to absorb everything at once.

We also made sure to talk about the appointment on our way home, while the information was fresh on our minds. And we did our part by researching myeloma and bringing a list of questions to each appointment.

Beth found an office visit planner on the Patient Empowerment Network website that helped me organize my health info and questions.

Dr. Reynolds:

As you can see, Sandra and her sister were actively engaged in each care decision. It’s vital that patients feel empowered to speak up. If you can, bring a friend or loved one along to your appointment.

And, if you are able, it’s a good idea to seek a second opinion or a consultation with a myeloma specialist to help you feel confident in your care decisions.

Sandra:

Dr. Reynolds let me know that she would monitor my condition through regular physical exams, blood work and frequent communication. She made Beth and I feel included in the decision-making process, as if it were a collaboration.

Dr. Reynolds:

That’s right! This is a partnership. So, what steps can you take to be more engaged in your care?

  • Bring a friend or loved one to your appointments.
  • Understand and articulate the goals of your treatment plan.
  • Ask about relevant myeloma testing.
  • Learn about your options and weigh the pros and cons of each approach.
  • And, consider a second opinion or a consult with a specialist.

Sandra:

That’s great advice, Dr. Reynolds. To learn more, visit powerfulpatients.org/myeloma to access a library of tools.

Thanks for joining us!

How to Play an Active Role in Your Myeloma Treatment and Care Decisions

How to Play an Active Role in Your Myeloma Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

How can you actively participate in your myeloma care and treatment decisions? Engaging with your healthcare team is essential and may lead to better overall outcomes. In this program, Dr. Rafael Fonseca provides tips for how best to advocate for yourself or a loved one, as well as tools for making treatment and care decisions.

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.

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Transcript:

Katherine Banwell:    

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to explore how to engage with your healthcare team when diagnosed with myeloma, and we’ll discuss the patient’s role in care decisions. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Let’s meet our guest today. Joining me is Dr. Rafael Fonseca. Dr. Fonseca, welcome, and would you please introduce yourself?

Dr. Rafael Fonseca:   

Yes, of course. Happy to do that. Thank you very much, Katherine.  

I am a hematologist/oncologist, but I specialize in the area of multiple myeloma. I work at the Mayo Clinic in Arizona. I currently serve also as interim executive director for the Mayo Clinic Cancer Center that is at large across the Mayo Clinic enterprise. But at heart, I’m a myeloma doctor and I love to take care of myeloma patients. I devote my research and the rest of my academic activities to the field of myeloma.

Katherine:                  

Excellent. Thank you so much for joining us today. Let’s start with a question that’s on the mind of many of our audience members. We’re hearing that the COVID-19 vaccine is safe, but how effective is it for myeloma patients?

Dr. Fonseca:               

Thank you. I think that’s a fundamental question. It’s hard to know precisely how to gauge effectiveness when it comes to vaccination because historically, we know that is done by measuring antibodies and there’s a number of publications that are addressing this.

The concern has been two-fold. One is that because the disease itself is something that starts from the person’s immune cells become cancerous, that perhaps that would prevent them from having a very good response. Number two, and perhaps more importantly, will the treatments that are used for myeloma, etc. or lymphoma, can they interfere with our ability to mount an effective immune response? I think the response is mixed right now. I think I tell all my patients the upside is much better than the downside. I think we have a good record now of the safety of this product. I encourage everyone to get their vaccination.

I think it’s important to discuss this with your healthcare provider because sometimes people say, “Should I stop a little bit so that I can get a better response?” While it’s theoretically possible, we don’t want people to stop treatment if they don’t have to do that. Just my very last quick comment, the good news is that the community transmission is clearly going down as more and more people have participated in the vaccination.

We have more people who now have participated in this level of immunity that we have in the community. Hopefully, for patients as well as for their families, the risk of contracting this will continue to decrease.

Katherine:                  

Yeah. We can only hope. Well, let’s learn a little bit more about the disease itself. Dr. Fonseca, to level set with our audience, can you help us understand myeloma?

Dr. Fonseca:               

I’m happy to do so. Multiple myeloma is a cancer form of the bone marrow that arises when the cells that under normal circumstances protect us by the formation of antibodies. These are called the plasma cells. They become malignant. Myeloma is the last stage of a process where a plasma cell can go through a benign tumor or benign phase, if you may, something we call the monoclonal gammopathy, which by the way is quite common. About two percent of people over the age of 50 have this abnormality. Think of it like the colon polyp, a precursor condition.

There’s an intermediate stage that we call smoldering multiple myeloma, which is just more growth, but not quite at the level that it creates problems for the individual.

Then lastly, what we just simply call multiple myeloma, and that is when the growth of those cells becomes of such magnitude that a person starts having problems or starts having symptoms related to that. These cells live predominantly inside the bones in the space we call the bone marrow. They can do a number of things that actually lead to the symptoms and to the clinical presentation. As they grow in the bone marrow, they take some of that real estate.

A person may experience fatigue and that is because they have anemia.

The myeloma cells are also very characteristic because they can erode into the structure of bones, so destruction of bone is another feature that we see in patients with myeloma. That can be either seen on x-rays or sometimes people will present with symptoms related to bone pain or discomfort with movement or weight bearing. Those are signs that we look for.

Lastly, the myeloma cells product proteins and some of the fragments of those proteins can be damaging to the kidneys. Occasionally, people will present with decreased kidney function and sometimes outright failure of the kidneys. Those are the common presentations. It is a disease that mostly affects people in their 70s. It is not something that you can detect through routine testing; it’s just indirectly we start seeing abnormalities and then we do the right testing. If anyone is hearing this, of course, they need to have a detailed discussion with their own provider.

Katherine:                  

Of course, yeah. When a person is diagnosed with myeloma, they usually have a whole healthcare team. Who is typically on that team?

Dr. Fonseca:               

Absolutely. Let me start by saying the key to the successful management of myeloma is to have a well-organized team. It’s a disease that requires an integrated approach that usually brings around the patient a physician.

As part of my team, we also have advanced practice providers. We work with nurse practitioners that help us do the longitudinal care of patients. We have the nursing team. Every time I meet a new patient, I make it a point to bring my nursing team into the room so they can put a name and a face together, as patients will be interacting, of course, with a nursing team through the portal and the various visits. We have a team that is in charge of the chemotherapy administration. That is usually a separate a nursing team that is in charge of the administration of the medications. But we really don’t stop there.

We have pharmacists who help us review the medications for our patients. Very importantly, we have social workers that help us address psychosocial needs, as well as some of the practicalities that become inevitable when one deals with a serious diagnosis like multiple myeloma.

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 gonna walk into a room. Are you gonna be seeing what I say, this is like a tennis match between professionals. Are you gonna 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.

Katherine:                  

Related to what you’ve just been speaking about, 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 gonna say that there are several roles that caregivers play. Some of them are obvious and I’m gonna 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.

Katherine:                  

Right, absolutely. Yeah, those are excellent points. Let’s talk about treatment goals. What are the goals of myeloma treatment from a clinical perspective?

Dr. Fonseca:               

I’ve been very fortunate, also, to live through this era when we have seen a plethora of studies and new drugs being approved for the treatment of myeloma.

When I first started, I used to say no one wanted to do myeloma because we didn’t have good treatments. People wanted to study leukemia, lymphoma. It just turns out that this is probably one of the most vibrant areas of hematology from a science and from a clinical research perspective, of course. If I see young patients who have multiple myeloma, I have essentially two goals. The first one is to induce the deepest possible response I can do so in a safe manner. I also repeat, “in a safe manner.” But I really have the goal to try to induce the deepest response possible because that has translated and continues to translate, and in many ways proven to be associated with an improvement on their longevity and the time we can control the disease.

And it leads me to second goal, and that is that I firmly believe there is a subset of myeloma patients that are cured from their disease.

Now, this is possible because of the availability of these new treatments. I will only be able to say that in 10 and 15 years from now, when we have monitored patients for a long period of time, and we have been able to see that became true. But by all indicators, we have patients that are living many, many years without the disease coming back. I think that would be important. Now, we have patients that with more advanced age sometimes it’s difficult to propose some of the most intense form of treatments like stem-cell transplants.

We don’t do a lot of that in individuals over the age of 72 just because the toll that it takes on a person is very high, and the risks become higher. But still, in that population, providing the best treatment possible becomes a goal because I think more and more, we’re seeing patients in that age category that can start to get close to what normal life expectancy would be. It’s not there. It’s not perfect, but you start to get close. Lastly, if someone asked me, I have that balance between quantity and quality, the good news in myeloma, if you do it right, quantity and quality go hand in hand.

So, effective treatment provides symptom relief and provides durability of responses.

Katherine:                  

That’s excellent. What other factors do you consider when determining a treatment approach?

Dr. Fonseca:               

The human experience that comes to the bedside as we consider treatments is so multi-factorial and multi-complex that all that needs to be brought into consideration. Whenever I walk into the room, I tell residents usually the medical part can be resolved pretty quick, but we’re reading how much we can communicate? What’s the level of understanding? What do I understand about the support system for this person? Is there someone who can drive to the treatment center? Is there someone perhaps whose other medical conditions would create certain challenges in how they’re gonna be treated?

This person is telling me they do daily hikes for four miles. Well, that’s different from someone who I see comes into the clinic and has to use a cane. We try to integrate all of that information to make the right decisions. I’ve made a lot of my career in the early years working and showing how, for instance, genetic factors are important. I’ve come to realize later in my career and through some of the very elegant work that other colleagues have done, that these factors are just as important in determining the ultimate outcome of patients. Whenever I talk about that clinical experience, there’s two things I always tell the residents.

I use the residents a lot because I think it’s a good example of how we aspire to interact with patients. Number one is every single encounter is a final exam. You have to put your best foot forward. Every single encounter should be considered a final exam. Number two is when I walk into that room, there are three things I do, particularly the first time I meet a person.

Number one is connect, right? We cannot have a conversation and I’m not gonna be able to move forward unless we have a human connection and I have gained the trust of the patient and the family members that are there. That’s number one. The second point is decide. That is usually okay, we’re gonna do this treatment or that. That is a small part. Most of the time for me, that’s a very small fraction of the time and of the mental energy that I consume. There’s cases that are more complicated, but most of the time it’s pretty straightforward. So, it’s connect, decide do very small, and then on the other end is explain.

So, that’s how I can connect. I propose we do this, and then why we are gonna do it and what can you expect. If you can do those three things, I think that goes a long way in establishing a fruitful and a productive relationship with a patient and their families.

Katherine:                  

I would suspect that you also take into consideration the patient’s health, their age, maybe test results, side effects, things like that?   

Dr. Fonseca:               

Of course. So, we look at the medical record and with the advent, of course, of the electronic record and all the tests that we do, our consideration is quite complex. We have to look at all those factors, and the age, and comorbidities. It’s rare that we would take one factor alone that would trump everything else. We usually have to integrate the information. The same is true when we manage myeloma patients and we’re monitoring their protein levels and their response to treatment. I tell patients, they ask me, “What would you do? What’s the magic number for this or that?”

I say, “It’s a little bit like you’re flying a Cessna plane and you have all these dials in your dashboard, and that’s how we manage the situation is the integration of all of that information.”

Katherine:                  

Right. Can you help us understand, Dr. Fonseca, how test results may affect treatment options?

Dr. Fonseca:               

Sure. Happy to do that. In myeloma, we are very fortunate in that we have, and it’s not the topic for today, but we have the best biomarker that exists for any cancer. That is that we can measure the proteins that are associated with the growth of the cells. We have multiple tests that we can do. We do them in the blood and we do them in the urine. They’re simple tests that have been done for decades now that allow us to monitor how a person is doing with regards to their disease. I use the following analogy. Myeloma cells live inside the bones, as I mentioned, in the bone marrow.

They don’t come out into the blood. So, we cannot measure them. Indirectly, we can measure how many they are and how they are behaving by measuring this protein. I use an analogy of imagine you’re walking in a street, and you see smoke coming out of a building. There are two things you can do. First is you diagnose that there is a fire inside the building, right? We see that with myeloma by measuring these abnormal proteins.

Then as a firefighting team comes on, you can gauge whether they’re making progress or not by the amount of smoke that comes out. That’s exactly what we do when we monitor myeloma. We monitor the M-Spike, the serum free light chain, the urinary proteins. That’s how we make those determinations.

At the same time, we do that, we have to look indirectly at the rest of the body. We have to look at the kidney function. We have to look at the blood counts. We have to look at the hemoglobin and the red cell count because that can (A) start on the wrong foot because of the myeloma itself, but (B) can also suffer as a consequence of our treatment.

It is, again, that idea of having the multiple dials in the dashboard that allow us to reach our practice. We have to be adjusting. So, if we measure the proteins and we’re doing great, but then at the same time we see we’re suffering in blood counts, and we may need to adjust those as we provide supportive treatment. If we don’t see the proteins go down, then that may mean we need to change to a different form of treatment or that the person is unfortunately a refractory or relapsing to something.

So, that’s how we integrate the test results into our management.

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 gonna 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 gonna 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% 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.

Katherine:                  

Dr. Fonseca, we have a question from a newly diagnosed myeloma patient. Barbara says, “I am just about to begin my first myeloma treatment. What can I expect?”

Dr. Fonseca:

Thank you, Barbara, for the question. I think if you start on treatment, first of all I hope they already went through a good description of what the treatments are, the frequency by which you’re gonna have to go to the center, and also what are the toxicities to look out for.

One of the most common toxicities that we face and one of the most challenging parts of initial treatment is the use of steroids. So, we use dexamethasone as part of every single regimen we use for myeloma. I tell patients, “Dexamethasone is a simple drug at first glance, but it’s oftentimes the most complicated part of treatment.”

The human brain works at triple speed when you’re on dexamethasone. So, it’s hard to sometimes be able to sleep properly. People can become anxious and even the sweetest person in the world can become a little bit edgy on dexamethasone.

I always say Mother Teresa on dexamethasone would be an edgy person. Just be patient. Work with the team. Just know that on the other side of treatment there is a return to normal life.

Our goal as we embark on treatments and, for instance, is I see patients that are going to go through transplant, I tell them, “Our goal is you finish, you recover, and you go back to your life. You back to work. You go back to your family, your kids, your sports.” That’s really what we strive for when we treat patients with myeloma.  

Katherine:                  

Yeah. Once on therapy, how is the disease monitored and how do you know if the treatment is working?

Dr. Fonseca:               

Well, fortunately, we use the same markers. Once a person is in therapy, we will be monitoring. We monitor at least on a monthly basis of those myeloma protein markers. Once a person reaches a great level of response, sometimes we complement that with an analysis of the bone marrow. Of course, it’s more invasive, so we don’t like to do a lot of them, but we do them as needed. As we go forward and monitor patients, we will be looking for signs that those proteins remain in a low level as stable as an indicator that the disease is under control.

Now, if I saw someone and then I start seeing that there’s an increased concentration of those proteins or we see something else clinical, we might need to do a little bit of a regrouping and test again in great detail to determine if the person is experiencing regrowth and the disease is so-called relapsed.           

Katherine:                  

Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Fonseca:               

Well, that’s a great question. If you don’t speak about them, we don’t know about them. It seems very obvious, but then we cannot make the proper adjustments. I’ll give you a couple of examples. I already talked about dexamethasone, but a common drug we use is something called bortezomib. Bortezomib is a proteasome inhibitor.

That’s a mouthful, but it’s one of the key type of drugs we use. It’s given as an injection under the skin. Not to be confused, by the way, with daratumumab. Faspro is the name of that medication, so not to be confused with that is bortezomib, which we have been using for many years.

Bortezomib has a potential toxicity that is called peripheral neuropathy. If patients have peripheral neuropathy, that can go from very mild where you have some numbness and tingling, to the more extreme cases that it’s associated with pain, discomfort, even weakness and disability.

Well, if we don’t know that’s happening, then we can’t react to it and we can’t adjust doses or switch to something different altogether. You can imagine now we have more options, but in the old days, I always tell patients, “You might be tempted not to say anything about this because you might be thinking, boy, this is working. I don’t want to interfere with my treatment. I can live with the peripheral neuropathy.” But if it gets worse, despite the fact that the treatment is working, the person might have a very significant impingement on their quality of life.

More so now that we have so many alternatives, it’s important not to get us into a path that we might reach a point of an irreversible chronic complication from treatment.

Katherine:                  

No, and that would be awful.

Dr. Fonseca:               

Absolutely.

Katherine:                  

Before we end the program, Dr. Fonseca, have there been any recent developments in myeloma treatment in research that make you hopeful? 

Dr. Fonseca:               

Absolutely. I would say that the one area of work that makes me most hopeful is what we’re seeing with immunotherapy. We have seen that both as the ASH meeting, as well as the ASCO meeting in this year, where people are presenting updates with the various clinical trials with either bi-specific antibodies or CAR T cell therapy as a new avenue for the treatment of myeloma.

In fact, at the last ASH meeting, we had 14 presentations of different compounds or different constructs that are active. I think the future is bright in that regard. We’re seeing their application right now. A lot of these updates have also been made as ASCO.

We’re seeing the update of the treatment of treatments with fairly advanced and aggressive disease where we can still show very significant responses. I participate in some of these trials. I can tell you in my institution, using some of the bi-specifics, I see patients who have previously exhausted all of their options and now are MRD negative at 10 to the -6.

If we’re seeing that in the very advanced disease, I cannot wait to see what happens when we start using these treatments in either early relapse and why not in the near future as frontline part of our therapy? I think to me, that whole field of T-cell engagers, where there’s bi-specifics or the CAR T cells remains one of the most exciting areas for future research.

Katherine:                  

How can patients stay up to date on information like this?

Dr. Fonseca:               

I think what we alluded to before is very important to work with groups like yours and other patient support organizations that can keep them up to date. I think they’re doing a very good job at also providing updates post some of the large meetings. I know there’s a lot of patients out there that are very sophisticated that will even join the medical meetings. That happens with some frequency; that they want to learn, and patients that go and ask me details about the statistics of the trial. That’s a whole spectrum, right?

But at the minimum, I would say a strong connection with a support group, or a patient support organization becomes an imperative as you deal with this. Also, that would help you because with this whole concept of the information not always being complete and truthful, that can be scary as well, too.

If someone goes and just looks for, I would say even some of the resources that are out there in a textbook today, just keep in mind that textbook was probably written five years ago, and it represents the studies of about 10 or 15 years ago. How that relates to you, it’s very distant. So, it is because of this continuous process of research that we know better what’s going on at the present time.

Katherine:                  

Dr. Fonseca, thank you so much for taking the time to join us today.

Dr. Fonseca:               

Oh, it’s my pleasure. Thank you for the opportunity.

Katherine:                  

And thank you to all of our partners. To learn more about myeloma, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.

Is the COVID-19 Vaccine Safe for Myeloma Patients?

Is the COVID-19 Vaccine Safe for Myeloma Patients? from Patient Empowerment Network on Vimeo.

 Should myeloma patients get the COVID-19 Vaccine? Dr. Joshua Richter encourages all patients to get the vaccine but notes important considerations around treatment.

Dr. Joshua Richter is director of Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai. He also serves as Assistant Professor of Medicine in The Tisch Cancer Institute, Division of Hematology and Medical Oncology. Learn more about Dr. Richter, here.

See More From Engage Myeloma


Related Programs:

Myeloma Treatment Decisions: What Should Be Considered?

What Standard Testing Follows a Myeloma Diagnosis?

An Expert’s Take on Promising Myeloma Treatment and Research


Transcript:

Katherine:

Is the COVID-19 vaccine safe for patients with myeloma?

Dr. Richter:

Absolutely, 100 percent yes. Everybody with myeloma should absolutely get the vaccine. What’s a little more complicated is the timing of it. So, one is in relation to stem cell transplant or CAR T-cell therapy. If you’ve had one of these, obviously, consult with your provider. But the general recommendation is to wait about 60 to 90 days after a high-dose therapy like that. And it’s not a question of safety, it’s a question of efficacy. Vaccines are like vegetables, seeds, you have to put them in the ground to grow. If you give yourself a vaccine right after a stem cell transplant, well, your bone marrow is not ready to work with it. It’s like planting a seed in the desert.

You want to make sure your immune system can take in that vaccine and give you immunity. So, you have to wait at least 60 to 90 days. The other question is, what happens if you’re getting continual therapy? And we don’t know the answer for most of these drugs, but one of the things is dexamethasone (Decadron), which is a steroid. Almost all myeloma therapy comes with some steroids. And we like to separate the vaccine from the steroid dose by a little bit if we can. Again, always important to talk with your care team as to risk/benefit about holding certain treatments.

What Does Remission Mean in Myeloma?

What Does Remission Mean in Myeloma? from Patient Empowerment Network on Vimeo.

The concept of remission in multiple myeloma can be complex. Myeloma specialist, Dr. Peter Forsberg explains. Want to learn more? Download the Find Your Voice Resource Guide here.

Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.

See More From The Pro-Active Myeloma Patient Toolkit

Related Resources

 

Relapsed and Refractory Multiple Myeloma: What’s the Difference?

 

Hesitant to Join a Support Group? Encouraging Advice from an Advocate

What is Personalized Medicine?

Transcript:

Dr. Peter Forsberg:

I also think that one thing that can be a little challenging in multiple myeloma is the concept of remission. I think in multiple myeloma what we think of as remission may be a little bit different than in other diseases, and I know that can be confusing for patients. Remission may just mean an interval of myeloma control. It may still be a time where you’re on active therapy or where the active therapy that you’re receiving hasn’t changed too substantially, but where the myeloma is under control whether it’s still detectable or not. So, that name can be a little bit different than what we think of as remission in other types of cancer and that can be a little confusing.

Myeloma Patient Cafe® November 2018 – Advocacy Opportunities for Myeloma Patients

Patient Advocate, Cindy Chmielewski (@MyelomaTeacher), leads this Myeloma Patient Café on advocacy opportunities for myeloma patients and care partners and the benefits of them.

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know

Living Well with Multiple Myeloma

Exercise and Nutrition Before and After Myeloma Treatment: What You Should Know from Patient Empowerment Network on Vimeo.

Downloadable Program Guide

Exercise and nutrition are important components to long-term health for everyone. But as a myeloma patient, are there specific tips for exercising safely? Can incorporating simple lifestyle changes improve and maintain good bone health? This webinar, featuring physical therapist Melanie House and dietitian Alexa Welch, both from University of Iowa Hospitals and Clinics, will provide guidance for individuals looking to increase their overall health through diet and exercise.


Transcript:

Andrew Schorr:
Greetings. I’m Andrew Schorr coming to you from Quebec City, Canada. I’m delighted to be here, and hopefully some of our Canadian friends are on with us. We’re going it go around the US as well with some leading experts in this important Patient Empowerment Network program produced by Patient Power. And the program is Exercise and Nutrition Before and After Myeloma Treatment, What You Should Know.

And we have some very knowledgeable experts who will fill you in, so take notes, with stuff you can discuss with your caregiver if you’re a patient, with your family members and for you to know so you do as well as you can living with myeloma whether you are going through treatment like transplant or on multiple drugs. Okay.

Lots to talk about, and we have received many of your questions already, but if you have a question send it in to myeloma@patientpower.info, myeloma@patientpower.info. I want to thank the companies that have provided financial support for this program. We’re very grateful to them. They have no editorial control, but they want to support the myeloma community. Those sponsors are AbbVie Incorporated and Celgene Corporation and Takeda Oncology. So thanks to them. All right. Ready to get started?

Let’s go first to Cleveland, Ohio, where he is joining us by phone, and that is my friend Jim Bond. Welcome back to our program. Thank you for being with us, Jim.

Jim Bond:
Oh, you’re welcome. Thank you for having me. It’s good to be here.

Andrew Schorr:
So, Jim, you were diagnosed with multiple myeloma. What is it, like 26 years ago?

Jim Bond:
Yes, in 1992.

Andrew Schorr:
Okay. You’ve had a variety of treatments and clinical trials, and you’ve had transplant, and then you also developed a second very serious cancer, AML, so you’ve had altogether I think four transplants. Is that right?

Jim Bond:
That’s right.

Andrew Schorr:
Whoa. Okay. Now, we should mention that in a couple of days, Jim, you are going to once again be on your bicycle four days riding 328 miles. What is that ride that you’re doing now for I think the 12th time?

Jim Bond:
It is the 12th time, and it’s the American Cancer Society Pan Ohio Hope Ride, which my wife Kathleen founded and leads. She got me to ride, and I’ve been able to do it 11 straight years and I’m done training. I trained an hour this morning and I’m ready to go, so in two days we start from Cincinnati and four days later 350 of us will arrive in Cleveland, Ohio.

Andrew Schorr:
Okay. Well, we’re all riding with you, Jim. Exercise and physical fitness has played a big role for you, and we’re going to come back to that in a minute, and you’re going to tell your story how your commitment to exercise has really helped you survive myeloma and also get the treatment you needed for acute myeloid leukemia, they call it. So we’ll be back to you, but I want to introduce our other experts.

So let’s go to our experts, medical experts who are in Iowa City, Iowa, at the University of Iowa Hospitals first bringing back to one of our programs oncology physical therapist, a veteran in the field, Melanie House. Melanie, welcome to our program today.

Melanie House:
Thank you, Andrew. It’s great to be here.

Andrew Schorr:
Okay. Thank you. And, Melanie, just to understand, you’ve been working with oncology patients including on the transplant unit there for about how many years?

Melanie House:
Well, oncology patients actually for most of my career. Probably in the early 90s I started working on some of the oncology floors, but I’ve been specific been overseeing the bone marrow transplant unit since January of 2010.

Andrew Schorr:
Okay. And they have some myeloma patients who come through there, right, who have transplant?

Melanie House:
Yes. Actually, that’s a significant part of our population, is the folks with multiple myeloma.

Andrew Schorr:
Okay. We have a lot to talk about. Okay. But you have a colleague I’d like to introduce who is a dietician with oncology patients and also works on the same floor as there with people who are going through a lot including transplant. So Alexa Welsh, thank you for being with us also from the University of Iowa Hospitals.

Alexa Welch
Glad to be here today.

Andrew Schorr:
How long have you been in the dietician field?

Alexa Welch
I have worked as a the dietician for three years, and then I have worked on the same floor as Melanie with the bone marrow transplant patients now for two years.

Andrew Schorr:
Okay. Wow. All right. So let’s start with exercise, Melanie. So, you know, I’ve interviewed a number of myeloma patients over the years, and there are some people who find out they have myeloma when a family member gives them a hug and then they have like cracked ribs, and they never knew that they had this illness they never heard of. They never knew that their bones were at risk, and then they go in and they get this diagnosis. And it’s terrifying. So you think, well, gee, if somebody giving me a hug can crack my ribs and I have myeloma how on earth can I exercise? What do you tell people related to these bone issues?

Melanie House:
Well, I always take time to educate my patients on where their lytic lesions or pathologic fractures may be located. In my experience that’s actually an area where patients often don’t realize, perhaps they’ve never viewed their imaging. And I encourage my patients to better understand that because if you don’t realize where those lesions are then you wouldn’t have good information to guide other activities or precautions that you might need to take.

Andrew Schorr:
Okay. So at step one, know where you have lesions. Step two‑‑but that would freak me out. I’m a leukemia survivor myself and I haven’t had those bone complications, but if I did I would be just terrified to do stuff. But yet, exercise is good for us, right?

Melanie House:
Well, I think‑‑yes. Exercise is good for you as long as it’s in the proper dose, right? And so it needs to be the right intensity, the right frequency, the right load. And so that’s where you really need to work with a professional who has good understanding of where your lesions are and understands the different biomechanical principles. You know, how the muscles might pull on that bone, that could be good or bad. How posture or lifting technique might impact your fracture risk.

So it’s important that there is a professional who’s knowledgeable working with you, a physical therapist that has access to those films or those scans to help inform them giving you the proper prescription for exercise.

Andrew Schorr:
A couple more questions for you now. So some of us know my friends Jack Aiello, who was treated with transplant years ago. He’s doing great. Also like you, Jim, a long‑term survivor of myeloma, but he was left with neuropathy, so he walks with a cane, sometimes he uses a scooter. But yet, you know, he’s aging like all of us and he needs exercise for his body. So what about if you have that complication of neuropathy, which some people do with myeloma?

Melanie House:
As far as exercise, we can find some form of exercise that’s safe anywhere along that spectrum. That all depends on the person’s balance response, their tolerance for weight bearing through their legs because some people have not only those sensory changes but they have more painful kinds of sensory changes with weight bearing.

So, again, it’s very specific to the patient, but the one thing I do want to emphasize about neuropathy is it is not a‑‑I have a lot of patients who say to me, well, I know my balance is bad because I have neuropathy, end of story. And I say to them, well, actually, you know, we have the potential to improve your balance because fortunately your brain is still connected to your muscles through your nerves, and we can recruit other muscles and help them work more efficiently together to improve your balance response.

And so I actually train my patients with neuropathy so that they can improve their balance and have heard countless reports back from patients who were discharged from the hospital and gone on to do outpatient therapy and recovered balance that they never thought they could.

Andrew Schorr:
Wow. How do you do that? Is it like practicing standing on one foot, or give us a clue?

Melanie House:
Well, that is actually‑‑I’m a very practical person, and I work with people that are laborers. You might work with a truck driver or somebody who is a farmer, and these aren’t individuals that are typically going to see (?) a gal at tai chi or something like that, and it is that simple. But if you can challenge yourself in single‑limb balance and do it safely that is really going to force your nervous system to have to respond more quickly and efficiently.

That is actually the test that I do and the exercise that I prescribe, but I set them up to do it safely. So if you can do this test and this exercise standing in a corner in your home where two pieces of dry wall come together with a chair in front of you then you’ve got the walls that can catch you behind and to the sides with the chair in front of you so that you can catch your balance if you need to and when you need to.

Yes, single‑limb balance is a great way to challenge ourselves. And you might get the feedback, well, I never stand on one leg, and to that I say, actually when we walk we’re standing on one leg over and over. So it does prepare a person to be better on uneven surfaces, slopes and conditions like that.

Andrew Schorr:
Okay. And we were talking about bone complications, and obviously if you’re worried about these lesions and you fall, which you might if you don’t have the best balance‑‑

Melanie House:
Right.

Andrew Schorr:
‑‑and that triggers more bone issues.

Melanie House:
Correct.

Andrew Schorr:
So we don’t want to really understate balance is important, and many of us and the people typically, not always, with myeloma are older, where balance isn’t as good anyway. So balance, we got to think about balance, right?

Melanie House:
Very important. Very important.

Andrew Schorr:
Okay. All right. Let’s talk a little bit about nutrition, Alexa, for a minute. So there you are in the transplant unit, and Melanie was mentioning a number of patients who come through are people being treated for myeloma. When you get blasted or even with less intensive transplant there are a lot of issues about feeling like you can eat. Maybe you have mouth issues, pain, etc.

So first let’s talk about somebody getting ready for transplant because that’s still used in myeloma in some quarters. How can somebody fortify themselves if they’re told, well, transplant is what we’re recommending for you?

Alexa Welch
So one of the most important things we want patients to be aware of before transplant is maintaining your weight. Try not to lose any weight. We don’t want you losing muscle or losing strength at all before transplant. So eating a well‑balanced diet while you can, while your appetite is still good. Eat from all the food groups. Get your fruits and veggies in. Get your proteins in. Keep your muscles strong. Keep your weight up. That’s pretty much the coming into transplant being prepped and as strong as possible.

Andrew Schorr:
Okay. But you’re sick going into transplant, so is this like I don’t want to say force feeding, but mean if there’s a care partner there, are they saying, George, eat your vegetables. You’re 72 years old. I mean what‑‑is it‑‑you have to make an effort I guess.

Alexa Welch
Yes, so actually most of the time when I see patients present on day one of hospital admission they are usually feeling pretty well and have been eating well at home and actually have not been losing weight usually. So sometimes when they’re first diagnosed they’ve lost some weight. They weren’t eating well. They were tired, they didn’t know why. That is usually behind them before they come in for transplant.

So typically actually when they get here they are feeling pretty good and have been eating pretty well. It’s going into their admission where they’re getting the chemo and they’re getting transplant that they start to not feel very well again.

Andrew Schorr:
Okay. Let’s talk about that. So people‑‑and of course we have groups in myeloma going through different kinds of treatment. Let’s talk about transplant for a second. If they’re on your unit how do you help them with their diet when, let’s face it, this is rough business. And Jim’s been through it four times. We’ll talk to him about it. But from your point of view how do you help people stay strong?

Alexa Welch
Yes, nutrition is very individualized just like Melanie was saying can for exercise. You just kind of have to figure out where the patient is and what they’re struggling with most. Some of the most common side effects are going to be loss of appetite, mouth sores, nausea, vomiting. We kind of take each of those individually.

So loss of appetite, typically we recommend doing smaller meals more often throughout the day instead of forcing yourself to eat three big meals. When you don’t have an appetite and you’re not hungry and you’re forcing food down sometimes it’s easier to force a smaller amount and try that every couple hours instead of sitting down to a big, overwhelming meal that you can barely even get three bites down and then you just feel hopeless because there’s no way you can finish all that food at once.

So sometimes just having snacks like peanut butter and crackers or fruit and cottage cheese or something small like that and breaking that up throughout the day helps get in enough calories and protein so that you’re not losing weight or losing strength. So usually that is what we do for loss of appetite when you are kind of force feeding. And then when you get to that point we’re not really super worried about eating from all the food groups, so if you’re not able to get your fruits or your veggies in for those few days I’m not going to be super concerned. Or a milkshake is the only thing that sounds good, then absolutely we want you getting your calories and getting your protein that way.

Andrew Schorr:
I’m glad to hear you say that because my‑‑my little kid when I went through chemo would bring me a great chocolate milkshake and I didn’t feel guilty at all. So that’s okay. You’re giving us permission.

Alexa Welch
Absolutely, yes. Absolutely. And I think most of my doctors and team agree with that, that if that’s the only thing that they can get down, then we’re definitely not telling them that they cannot have that.

For nausea and vomiting, usually our pharmacists and our doctors have medications that they can get on board to help, antinausea, antivomiting medications that help control that. And then from my end I just make sure my patients know that right after they get a dose of that medication is when they should try to order some food or eat some food so that that’s fully kicked in and they can try to get as much food down and keep it down as possible. Obviously, if you’re force feeding yourself and it’s going to come back up, it doesn’t do any good. So medication does usually help control the nausea. We’ve just got to make sure that we find the right cocktail for them.

Andrew Schorr:
All right. Post‑transplant, and this may be for people who are on these two‑, three‑, four‑drug combinations now for myeloma, what are you recommending now for a healthy diet? We’re doing some recipes on our website and people say try this, try that, but what are you recommending so that people can regain their strength or be as strong as they can because they’re probably getting some ongoing medicine?

Alexa Welch
Yeah, so appetite usually is kind of slow to come back after transplant. I do hear from my patients who have left and then either come back for a second transplant or hear from our outpatient dietician that works with them that going home just helps your appetite too. Being able to eat your own food in your own home helps a lot. Usually as soon as appetite comes back patients are able to kind of eat, you know, back to normal, back to three meals a day instead of snacking throughout the day.

Recovering, honestly, is still just adequate calories, adequate protein so that they’re still not losing weight. I still never encourage weight loss even after transplant is done because that can be muscle loss and can affect your strength overall. We want you to not be losing weight after transplant as well. And then in general I do a food safety education with patients before they leave the hospital, so making sure‑‑you know, because after transplant your immune system is still not perfect, and we want to make sure that we are eliminating as much bacteria from the food you’re eating so that doesn’t cause any issues, you don’t get any food‑borne illnesses. So we go over that kind of stuff.

Besides the food safety and then adequate calories, adequate protein, you know, weighing themselves, making sure they’re not losing weight. That’s pretty much it. We just want you to stay strong and make sure you’re eating well. And then once you are feeling a little bit better focusing again back on that balanced nutrition, so eating from all the food groups and getting your fruits and veggies in and all that.

Andrew Schorr:
One last question for you now. So there are these products you can get at the supermarket, you know I don’t know the different brands, Ensure and I’m sure there are other brands, high calorie. Do you recommend that to people if they’re not eating a plateful of food?

Alexa Welsh:
Yes, absolutely, especially when they’re in the hospital and their appetites are bad and they’re not eating very much food or they can’t force down solids sometimes liquids do go down better. We use Ensure here. That’s just who our contract is through, but Boost is an equivalent. Equate, or the Walmart brand make their own. That’s an equivalent. I think Costco and Sam’s will have their own.

They all essentially serve the same purpose, which is higher calorie, higher protein in a smaller amount and so that you’re not again having to force feed yourself all day long when you don’t feel well. I would say those are indicated again when your appetite is not very good or you’re having issuing with nausea and vomiting and maybe that’s the only thing that stays down. But once your appetite is back and you’re eating better those aren’t really necessary as soon as you’re able to maintain your weight on just food.

Andrew Schorr:
Okay. We have a lot more to talk about about food and exercise, but Jim’s lived this. So, Jim, you’ve been through transplant. You’ve been 26 some‑odd years. You’re riding a bike, but you’ve been in and out of hospitals and you’ve had your highs and lows. First of all about exercise. Jim Bond, what would you say to people about the benefit of exercise when you have this diagnosis?

Jim Bond:
I’d say it’s one of the key reasons that I’m alive today. And, Alexa, I agree with everything you said, and I’d just like to add a couple personal notes on my diet. I have gone through four stem cell transplants, and what I made myself do is get out of bed, starting with the first one, and it was hard because I was knocked down with the drugs they gave me. But I found that by getting out of bed and then when I was able take a few steps, and then walking around the floor pulling my IV behind me, it gave me‑‑it gave me‑‑it would tire me out, keep me from sleeping in the afternoon, and it actually helped stimulate my appetite. So I would recommend that you try that as much as you can.

If you can’t get out of bed yet just make yourself‑‑I made myself sit up in the bed as long as I could, and that sounds trivial but at times it was not trivial. And, Alexa, my wife, Kathleen, who is my caregiver, she found a high‑calorie, high‑protein drink that she brought in, and I found different flavors work for me. Orange was my favorite. But that was‑‑to me is what was key.

I found what appealed to me food‑wise, and I just ate as much of that as I could. I didn’t worry too much about three food groups. I was too sick. But when I found something that worked for me I would do it. I would also order all three of my meals when I woke up in the morning, and when they arrived that gave me the motivation to, okay, try something. If I put off ordering, then I might not even have the desire to order. So that was a little bit helpful for me.

But exercise has been key throughout my battle with cancers. In fact, exercise saved my life, as you referred earlier. I was‑‑I was 64 years old. I had lived with myeloma successfully for I don’t know many years, and then I got leukemia. And it was the kind of leukemia that’s treatment related and they said, hey, Jim, the only way you can live is by getting yet another transplant.

So they threw me in the hospital for what turned out to be three months solid. They got my leukemia down. They found a match on the matching database, and they came in my room, and I was thrilled. I said, great. When do I get the stem cells? And they said, well, we’re not sure you can live through another transplant, and I said, but that’s the only way I can live. And they said, but we can’t kill you.

So I pleaded my case. They came back and they said, Jim, the doctors who were voting against you on our committee, they changed their mind and voted yes when they heard that two months ago you cycled 328 miles, four days in the American Cancer Society Pan Ohio Hope Ride a month ago. So the exercise of not only training and riding in the bike but just every day doing something, that saved my life because they were not going to give me that‑‑turned out to be a German woman’s stem cells. They said I was not a good risk until they heard what exercise did for me.

And that’s really been true all through this thing. By exercising, doing something every day, I think it made my body able to take more and more treatments because, as we know, today myeloma is still not curable so when it comes back I want to be as strong as I can to make myself tolerate another one. Now, each day what I think of as my mantra is to be on my feet not on my seat. And right now I’m standing up talking to you because I think even standing is better than sitting. And Melanie’s great guidance at a seminar we were at helped me understand that walking is really good for us and standing is better than sitting. Sometimes it’s hard, but I make myself do that.

Andrew Schorr:
Right. Oh, boy, what a great story. And now let’s go to the guru here, Melanie. So, Melanie, I got as a Father’s Day gift a Fitbit. Somebody may get a bigger one, a smaller one, an Apple watch or just count their steps somehow. So today Esther and I are in Quebec City, where we are partly on vacation. We did 11,000 steps. And I’m a two‑time cancer survivor, chronic lymphocytic leukemia and myelofibrosis.

So, Melanie, just walking, is that good? I mean, I didn’t jog and I didn’t lift weights today, but I walked.

Melanie House:
So that is a huge accomplishment, especially when you think about what you achieved by walking. Something that people don’t realize is that‑‑earlier you mentioned the importance of load bearing to the bones in order to stimulate bone density. Well, people don’t realize that when we’re walking because of our body weight and the influence of gravity when your foot hits the ground your bones actually experience about one and a half times your body weight. So you are actually doing an appropriate dose of loading in those long bones in your legs, for example. So you’ve gotten some weight bearing in. You’ve gotten some endurance exercise in. Helps to build your cardiovascular system.

And the other thing is that walking I do want to mention because a lot of my patients, they’re very fixated on walking and I applaud them, but if we are trying to prepare people to be able to do other things like climb their stairs, then we do have to add a different type of exercise to prepare them for that.

Andrew Schorr:
Okay. What’s that? So how do I‑‑or our friend Cindy (?) Chimileski and some of the other myeloma patients have even done these mountain climbs, which have been incredible. But how do you prepare for climbing? Steps or mountain?

Melanie House:
So as it turns out, you practice for the test for most things. So if what you need to be able to do is climb stairs we need to either be climbing stairs while you are in the hospital, or in our case because we know that our patients are prone to getting low blood pressures while they’re here, it’s usually I think a side effect of the chemotherapy, then we have gone to what what’s called the NuStep. That’s the name of an exercise machine that is basically a seated stepper. So that is one way that we’re able to get people working on their stair climbing muscles in a safe with way while they’re hospitalized.

But even an exercise like bridging that’s something that can be done lying in the bed. For my patients that can’t get in the hallway we’re doing a bridging exercise which is working all of the same muscles at zero percent risk of falling down because they’re already laying in bed.

And some people like to do squat exercises which can be done and should be done over a chair or over the bed. But the one precaution there if you are dealing with fluctuations in blood pressure is if you’re doing that sit‑to‑stand motion repeatedly that could bring on that sense of light‑headedness or weakness because of the drop in blood pressure.

Andrew Schorr:
We talked about bone complications, and we were talking about people going through transplant, different medicines. So we have highs and lows with any of these blood cancers. So you and I were talking before the program and you were talking about people being aware of their numbers, their blood test numbers.

Melanie House:
Right.

Andrew Schorr:
So talk about that a little bit as to us having a clear idea of where we are, not just do we have a lesion in a bone somewhere but about our blood.

Melanie House:
So the most common complaint that I hear people say is I’m just so tired, or I get short of breath when I’m doing stairs or walking, and I think there were each some participants today that sent in some questions asking about what can I do to address my shortness of breath. And the first thing that I think about as a clinician is where are your numbers at for your hemoglobin or your red blood cell count, because our red blood cells, they are the vehicles that actually deliver oxygen to our muscles and to our brain.

And one of the most important muscles that must get oxygen is actually your heart, and so it is important to recognize whether you’re anemic. If you’re anemic I can tell you right now there is not a single reference that I could find that would support you or support me prescribing you vigorous aerobic exercise because anemia means you’re at about half of your normal amount of red blood cells yet you’re trying to do vigorous exercise. The muscles that are doing the work are going to aggressively be pulling those oxygen molecules off of the red blood cells, but you only have half the number of red blood cells that you should have to deliver oxygen.

So it doesn’t matter if your oxygen saturation probe says you’re 100 saturated. That just means that those half of your red blood cells that you have happen to be fully loaded, but there’s not enough of them to safely do vigorous aerobic exercise, and your heart could suffer the consequences. I’ve had patients who actually did induce a heart attack just from walking at a time when their hemoglobin was very low and when their blood pressure was low.

Andrew Schorr:
Okay. So let’s go over a couple things we talked about with you. One is related to bone complications, understand where you have bones that are at risk.

Melanie House:
Correct.

Andrew Schorr:
Right? Okay. That’s the first thing. And hopefully there are bone‑‑there are medications now that some people have discussed with their doctor that can try to slow the progression of those bone complications. Okay. So that’s part one. Part two is you talked about balance. That’s so important. Even if you have neuropathy don’t be freaked out that you can’t develop balance. And then related to knowing your blood counts so that what you’re pushing your body to do is healthy.

Melanie House:
Correct. Right.

Andrew Schorr:
Okay. All right. Got it. We’re going to come back for some more. I want to get some specific exercises. So walking is good. Climbing, if you have stairs in your house, those kinds of things, or if you’re training for one of these myeloma challenge trips, whatever it is, we’ll talk about that more in a minute.

Alexa, so we talked‑‑you keep saying, you know, fruits and vegetables and balanced diet and all that, but patients we have are friends in the myeloma community say, well I’m going to do this special diet in their effort to take back to control where cancer has kind of tried to take control away from them. So how do you feel about special diets, whether it’s meat, vegan, you know? How do you feel about that?

Alexa Welch
So some of those diets just end up being overly restrictive or totally cut out certain food groups, which is not‑‑I mean, there is just not enough evidence out there to support any of those restrictive diets actually really helping. Cutting out food groups like that sometimes results in weight loss, which, as I have mentioned a few times before, that’s definitely not the goal. We don’t want you losing weight. Don’t want you losing muscle.

And a lot of times when you’re sick and you have cancer and you’re going through treatment, any time you’re losing weight unfortunately it’s muscle loss. It’s not fat loss. And so then again that results in weakness and poor outcomes as far as response to treatment and recovery. So, yeah, some of those special diets, I mean, I would have to take it patient by patient if they feel very strongly about it, but, yeah, a lot of times they’re just really restrictive on certain food groups that they can’t have or should cut out totally. So I don’t usually recommend those.

Andrew Schorr:
Okay. So a couple of questions. Maybe these are myths or not. So some people have wondered, does sugar intake feed the cancer cells?

Alexa Welch
So a lot of the foods that we eat, all carbohydrate food, so whether it’s fruit, grains, rice, milk has carbohydrates in it, any carbohydrate that we take in will break down to a molecule called glucose, which are‑‑all of our cells in our body need glucose to function properly. It’s the energy that they use. So whether those carbohydrates are coming from sugar, artificial sugars or added sugars or natural sugars from fruits, they all break down to glucose.

We cannot control which cells get the glucose that we take in. Once we eat it, our body does with it what it will, so the cancer cells just happen to be very glucose hungry all the time, so they will take up and use a lot of that glucose. That being said, if you’re not eating enough glucose or not eating enough carbohydrates in general your body will break down your muscle stores to get that glucose.

And that is why you don’t want to be restricting certain food groups, especially carbohydrates because the rest of your body still needs the energy to carry on the normal functions of everyday life. So you shouldn’t be cutting out some of those food groups like the carbohydrates that are fueling the rest of your body too.

Andrew Schorr:
Okay. Another question, juicing. So people have all kinds of‑‑there are juicers you can buy, and your best friend down the street will say, oh, you’ve been diagnosed with cancer and you should be juicing, carrot juice and this juice and that juice. Any comment about that?

Alexa Welch
Yeah, so I just don’t see the issue with eating the whole food is. The whole fruit or the whole vegetable that you’re juicing, you’re taking out a lot of the fiber. You’re taking out a lot of what keeps you full, the substance to it, so then you’re having to spend a ton of money on groceries relies to get less benefit, if you ask me, because you’re taking out, again, that fiber that’s very beneficial for keeping you full, helps cholesterol.

So those are not things that you want to be leaving out of those foods that you’re taking in. You still get all the vitamins, all the minerals from those fruits and vegetables, but, yeah, eating the whole thing is more beneficial.

Andrew Schorr:
Okay. You were being conscious of our diet at the grocery store. What about the health food store, the pharmacy about dietary supplements? Comments about that?

Alexa Welch
Yeah. So one thing to be careful about any over‑the‑counter supplements like that are not FDA regulated. So you want to be careful that if you’re taking any dietary supplements, herbal supplements, any extra vitamin, C, A, whatever, that you’re clearing that with your doctor, your physician, your oncologist, your pharmacist, talking to your medical team about that and making sure that they are okay with you taking those extra supplements. Again, they are not FDA regulated, so just because they say something is in it, that hasn’t been tested. So you want to be very careful about that.

And some of those supplements can interact with certain chemo drugs. There are certain medications that you might be on every day, so you want to again clear that with either a pharmacist or a physician to make sure that it’s okay if you’re going to take any supplements like that.

Andrew Schorr:
Okay. So when I go to the gym they have a little store in the front, and they have those huge jars of protein powder. So you’re saying even that, check with my doctor.

Alexa Welch
Yes. Especially‑‑I mean, you want to make sure that if you’re going to do the protein powders like you want to make sure that it’s a brand that you trust. So in general bigger brands like Walmart’s brand or some of the‑‑like Abbott, who we get Ensure from, they have their own brand of protein. Some bigger brands like that are going to be ones that you can trust because if they were putting‑‑you know, you hear myths about people having like actually sawdust in their protein instead of real protein powder.

So those are the kinds of things you want to avoid. Usually big companies like that are more trustworthy because if they were found to have bad ingredients in their protein powders they would have more to lose essentially than some of the little companies you’re buying online that you don’t want to necessarily trust. Generally, if it says 100 percent whey protein 100 percent soy protein, those are a little bit more trustworthy.

And always, again, good idea to just run it by your doctor make sure they’re okay with it, or ask the dietician to read the label for you. Some grocery stores have dieticians that work there. Some gyms have dieticians, so use your resources.

Andrew Schorr:
Right. I will mention to people now, so we go to this ASH, American Society of Hematology medical meeting, thousands of doctors talking about myeloma among other cancers from around the world, and so now we’re talking about often four‑drug combinations for people with myeloma. So if you go into a store they don’t know that you’re taking drug A, B, C, D. They probably never heard of them nor know the profiles of those drugs and how it will line up with something they’re going to offer you. You’re not just a super healthy person who is taking no drugs coming off the street, so you have to check.

Okay. So, Jim, you’ve been listening, and you’re about to ride in a couple of days again 328 files. Now you’re of course just a subject of one, but, Jim, what do you eat? What is your diet, whether it’s when you’re doing these rides or just day in day out?

Jim Bond:
I get asked that a lot, and there’s a lot of people that really do focus on special diets. I do not focus on anything special in my diet. I focus on trying to maintain my weight. I do exercise, and for some reason since I’ve had cancer and the transplants I really have to make myself eat as much what I consider healthy food. For example, my lunch today consisted of a meat sandwich, potato chips and an apple. And that’s typical. And for breakfast I eat eggs, meat, toast and potatoes, which is‑‑turns out to be my best meal. It’s my best appetite. And a normal dinner, you know.

Yeah, we have vegetables. We have meat. I love corn on the cob in Ohio. It’s great. But I don’t worry about anything really special. I want to keep my weight up. So when I go in, and I do go in monthly for a bone strengthener I’ve been getting for 24 years now, the biggest surprise for me is, okay, how did I do on weight this month. And when it’s higher I’m happy. And typically the nurses frown at me because they’re trying to lose a little weight, but I’m always trying to maintain or keep my weight.

Now, another reason‑‑I do pound a lot of liquids. My kidneys, I was told, because of the type of myeloma I had, I was told, look, Jim, your kidneys and your bones are at risk. So they said drink, keep yourself well hydrated especially when you’re riding your bike in the summer in July in Ohio. So I drink a lot of water with something in it, you know, a Gatorade or something flavored, not just pure water. But that’s really important to me.

And yeah, it’s inconvenient. Gets me up a lot at night, you know, going to the bathroom, but I believe it’s worth it. And it drives my sodium down. When I get my chems every quarter my glucose and the rest of them are fine, but it’s all I can do to get my sodium into the normal range. So, believe it or not, even with the doctor’s okay they said, Jim, eat more salty foods, which I know is kind of weird, but that’s the way I roll, and so I really don’t worry about that.

It’s the bones though. I do worry about my bones. I’ve had a lot of bone involvement. I’ve got metal holding some of them together, but I’m lucky enough to be able to walk on my own, ride my bike. But it’s taught me, Jim, cut down on the risk. Stay off ice. Stay off step ladders, stay off stools. It’s just not worth it. So I try to do that.

But one comment you made is be sure to check with your doctor on what seems like it’s something that’s not worth it. Green tea is a good example of something a friend of mine who is a myeloma patient had no idea he should have cleared that with his doctor. Because he thought green tea, that’s fine, only to find out from his doctor, no, the medication he was taking was actually nullified by the green tea. So it’s really a good idea to run what you think is not very harmful, run those things by your doctor or nurse and make sure they’re okay with that.

But every case is different, like you said, (?) Jack, and for some reason it’s worked out pretty well for me. But I do take a few‑‑I do take a few vitamins that leading hospitals have recommended, and they’re for neuropathy and hopefully to keep the myeloma away. And I’m happy to share things, but you can get me‑‑you can find me on the internet or through somebody.

But the thing is you can’t just willy‑nilly take things. You’ve got to run them through your medical team because your case is, you’re own case, each case is different, and, sure, it’s great to talk to people but just run it by somebody.

Andrew Schorr:
Right. All good points. Okay. We’ve been getting in questions, and if you have a question now send it in to myeloma@patientpower.info, myeloma@patientpower.info.

Here’s a question we got in from Laurie. Laurie says, my husband has 13 vertebral fractures from his myeloma. He’s not a candidate for the various surgeries (?) Inaudible, kyphoplasty, etc., to do repairs, so he’s been doing plank exercises for two years, and he has a brace and support.

So one of the things he’s wondering is could tape, Melanie, like athletes do, kind of some kind of taping when he does exercise be supportive for him? Would that be a good idea, like athletic tape?

Melanie House:
Well, actually it’s a little bit different. I think the tape we’re referring to is a little different than athletic tape. It’s called Kinesio tape, and it’s been around since the 70s actually, and it is something that has been shown to help with musculoskeletal types of pain, so it could be worth exploring. If this is the same question I’m thinking of, this individual complains of the pain that radiates around the bottom of the ribs.

Andrew Schorr:
Correct.

Melanie House:
That sounds like it’s probably one of the intercostal nerves that could have some compression on it perhaps due to where the vertebrae has lost its height and therefore the rib is getting compressed and maybe pressing on a nerve. So yes, there’s some potential there. If there could be some lift appreciated on one of the ribs or just to create a little more space there.

The other thing that I thought about is when we’re laying flat‑‑I hear this all the time. I just had a patient today say to me, well, I was six‑foot‑three but not anymore, and this individual just had some back surgery done, fused his lumbar spine. And so I explained to him that it’s best if we put his back brace on when he’s laying down because that’s when the vertebrae are off‑loaded so your disks are at their maximal height, and if you can put a brace on laying down and put it on so it’s comfortable but snug, once you sit up you’ve done the supporting that you’ve needed to before everything tries to collapse.

Andrew Schorr:
Okay. Good points. Mike Furlow sending this question. He said he discovered myeloma when a plasmacytoma broke my humerus near my shoulder. My bone scan and CT scan showed no other significant lesions, but he later found significant damage to my right ankle during the surgery. So he’s wondering, is it safe to assume I have damage elsewhere? He just doesn’t know what to do. And so do I have to be particularly careful about bone injuries going forward. He’s worried. What do you say?

Melanie House:
Yeah. This sounds like a classic case where you know there’s got to be‑‑there could be some other problem in there but you can’t see it, you don’t know about it, so that fear creeps in, and that could paralyze somebody really from doing exercise that could be benefitting them.

So I would definitely recommend that he meet with his doctor or primary care provider who has access to his films, his recent scans, so like a whole‑body MRI or the PET scan, and go through, where are the lesions that I should be concerned about, and how would that guide my exercises or working with a physical therapist to come up with a safe program. Because if you don’t know where they are and you fear that there’s something electric there, I’m going to do the same thing. I’m going to think it’s safest to stay in my recliner probably.

Andrew Schorr:
Okay. So Jim mentioned a couple‑‑he mentioned a lot of significant things a minute ago, but he was saying that he knows given his bone complications there’s certain things that he’s going to avoid. He lives in Cleveland. In the winter he’s going to be real careful about ice. And if his wife says, gee, can you change a light bulb up there and it means going up on the step ladder, he’s not doing it. Okay?

Melanie House:
(?) And she probably wouldn’t ask.

Andrew Schorr:
She won’t ask, right. So the point is what about changing sort of activities in daily living so you can be active but be safe?

Melanie House:
Well, the first thing that comes to mind, and this is again going back to where I am most concerned for my myeloma patients, and that is the vertebral fractures because I‑‑it’s just‑‑it’s so sad to me when I see folks losing, progressively losing their height knowing it’s because these vertebrae are literally collapsing, and the biggest force that causes the collapse is flexion.

So when you think about in your daily life how often do you have to flex. Oh, I have to bend over to put my shoe on, I’m pulling my sock up. Oh, I dropped the paper, or maybe I’m picking something up off the floor that normally sits there like the food bowl for my cat. And so these motions can result in significant pressure forces going down the front of the vertebrae that actually lead to their collapse.

So one way that a person can change the way they’re moving throughout the day is hamstring stretching is a good start because the longer your hamstrings are the less you have to flex through your lumbar spine. But for others it’s beneficial to even use adaptive equipment. Like our occupational therapist will train people on how to use something called a reacher, and that just allows you to be able to bend over safely but not bend too far and still pick an item up so you’re at less risk of losing your balance and falling but also less risk of causing those flexion compression fractures of the spine.

Andrew Schorr:
Well, so you’re saying don’t bend down for the cat’s bowl. Maybe there’s some grabber or something will help you do it?

Melanie House:
Well, in that case‑‑I mean, there’s different ways to approach it. If you can squat rather than bend. The thing is that we all have our habits, and we don’t even realize what we’re doing until we see a video of ourselves or someone points it out. But if you know you’re at risk for compression fractures in your spine, going through some training to actually learn what ways could I move differently, what strategies could I use that are safe and still let me do the things I need to do, there’s always a way to accomplish it. It’s just that it’s very individualized for each person.

Andrew Schorr:
Okay. Remember, send in your questions to myeloma@patientpower.info.

Here’s another one again for you, Melanie, from Paula. Any thoughts on interval training or other techniques to help my body use oxygen more efficiently? So interval training, that would be like running for two minutes and then walking and running or longer. If you kind of start, stop, right?

Melanie House:
Yes. And interval training, I use interval training for patients in the hospital who can only walk 10 or 15 feet and have to sit and rest. We can call that interval training. Or, like you just said, it could be something like being on a bike or walking or jogging where you’re just doing that higher intensity and then you do the lower intensity.

So for each individual you have to find that right combination of exercise that’s still safe for you, but the first thing that I would think of in this question is again back to, okay, what are your lab values? If you’re hemoglobin is low, if you happen to be anemic, then you really do have to listen to your body. If you’re feeling short of breath, you should not be pushing through that.

So, yes, interval training would actually help you to build your endurance and your total distance that you could walk, and that to me suggests that you’re listening to your body and you’re slowing down when your body is telling you need to.

Andrew Schorr:
Okay. Alexa, lab values are not just about hemoglobin, but they’re also about creatinine. Jim was talking about kidneys. Certainly patients are at risk for kidney problems. My doctor says every time I see him, Andrew, drink more water, drink more water, drink more water. Jim was talking about that too. And also looking at whether we’re getting enough of different minerals as well. So that can show up in our lab values too. We should be aware of those, right?

Alexa Welch
Absolutely. Your doctor can test you for any vitamin deficiencies as well. Yep, your labs are very telling for, you know, if you’re hydrating properly, if you’re well nourished. But yeah, so definitely I think you’re doing the right thing staying hydrated and making sure you’re getting enough liquids. That’s definitely the best thing, one of the best thing for your kidneys.

Andrew Schorr:
There you go. I’m going to drink some more in a second. But I‑‑so, Alexa, and this is for you, Melanie, as well, but first you, Alexa. So what do we do? So you all are at the big university medical center, but even at clinics they often have a dieticians. Increasingly now some of the larger clinics have a physical therapist or maybe consulting one nearby.

Should we consult with you, not just if we’re having a transplant but we’re there for a clinic visit? Can we say, I’d like to see the dietician? I’d like to see the physical therapist because I want to be strong, I want to exercise, I want to eat right. I mean, that’s something we can request, correct?

Alexa Welch
Absolutely. I know here we have a dietician who works out patients specifically just for our cancer patients who are here for clinic visits. Usually her schedule is pretty flexible, and she is able to add patients on same day. So obviously I don’t know how it works everywhere, but every patient should be an advocate for themselves and how they want their treatment to go. So if they’re losing weight and they know they’re not supposed to, then you meet with the dietician and see what they can do differently for calorie boosting, for protein boosting, and same thing I’m assuming with physical therapy as well. You need to be an advocate for yourself. Ask for those consultations if you’re not offered them.

Andrew Schorr:
Melanie, you’d say that?

Melanie House:
Yes. I would agree. And the other thing is actually for physical therapy in most states it is a direct access option for you so you don’t often‑‑depends on what state you live in, but you don’t always have to have a doctor’s referral to be seen by a physical therapist.

That said, you’ve heard me say over and over, if I’m recommending that you see a physical therapist I want that therapist to actually be well informed of your past medical history, any of your lab values, any of your films and your imaging. So some facilities will still request PT counsel just so they have that physician connection and can get all those types of things that they need to know.

Andrew Schorr:
Right. Right. So, again, wherever you may be in the sound of my voice, if you will, all physical therapists are not equal. Melanie is an oncology physical therapist now, and she’s going to understand the risks you have in myeloma. We talked about bone, balance, the lab values, etc., maybe even complications from treatment you’ve had or medicines you’re taking. So somebody needs to see the whole picture. Same with a dietician, right?

Alexa Welch
Yes.

Andrew Schorr:
So trying to see people get the whole picture is important. You’re not going to have that at the health food store. You probably won’t have that at the pharmacy. You need to seek out somebody who’s knowledgeable about this.

So, Jim, a little bit about cancer patient consumerisms. You’ve had to really speak up for yourself. First of all, play a role in your care and speak up for yourself so you get the care you need and deserve. What you would you say to our listeners today so that when you think about diet, exercise, and going on with their life, which many people, and you’re a great example, now with myeloma can, what would you say to them so that they advocate for themselves to get consultants like these on their team?

Jim Bond:
Everybody’s different, and I believe everybody should handle their case the way they’re comfortable. Here’s what my wife and I are very comfortable with. I want to be an equal partner with my medical team. I don’t want to be the boss, and I don’t want to be bossed around. I want to have an equal vote.

And a good example of that is at about the 10‑year mark I was told here in my home town, Jim, you’re done with any treatments available. So you have to go to a hospice. You’re all done. And I said, no, I’m not going to a hospice. I said‑‑and that made the doctor leave the room, angered, but before he left I was able to say I know of a clinical trial that I had gotten word of in an out‑of‑town second opinion in those 10 years, and I said, I’m going to try to get in that clinical trial. And he told me I was wasting my time. I got in it. I was lucky enough to get in it anyhow. Had the leave town.

And I think that’s one of the great examples of being an equal partner. Okay? The doctor had certain advice, and it’s happened before in the 26 years. But I spoke up with my wife’s support, and I said, look, what if we tried it this way? What if we tried that three‑drug mix but without the steroid because I don’t really like to take steroids once I learned it caused one hip to have to get replaced. And the doc says, you know, I’m really not that keen on that, Jim, but I’ll go along with you if you want to run the risk. I said, yeah, I really do, and if it doesn’t work, if the numbers go up, we can always add the steroid later. And, you know, two months later the very popular myeloma doctor called me back and said, Jim, good call on your part. It worked fine without the steroids.

So advocate for yourself. Don’t be afraid to get educated. There’s lots out there. But if you don’t want to that’s okay too. If your way of handling it is different than that, I believe that’s‑‑your way is right for you.

One thing I’d add to the stretching and the back stuff. I’ve got severely curved spine. I’ve lost at least three inches of height, and I’m sure I’m at risk for something back there. But they don’t tell me, Jim, don’t bend or don’t do this. Well, I do stretch my hamstrings daily. That’s very important to me. And what I’ve learned to avoid is lift‑‑I don’t lift heavy objects. So how do you go along with your life? Well, you figure out ways. You know, it’s great that we have luggage that has those rollers on them. I have a briefcase that has rollers on it because I feel the pain. If I lift I’ll feel the pain the next day. So I stay away from lifting.

But, no, I just go ahead and do things. And I try to ask the doctors and nurses, tell me what I should not do, and I listen real carefully and being an equal partner I got to weigh all that, and I let them know where we’re coming out on things. But it’s fine to advocate for yourself and the longer each of you live with myeloma the more you’re going to realize, hey, there’s a lot of flexibility here. No one’s got the answer or we’d have a cure. So there is some flexibility, but you’ve got to use your good judgment and that of your medical team.

Andrew Schorr:
Great advice. So, Melanie, what do you want to leave people with on the importance of exercise wherever you are in your myeloma journey and having the right consultation so you can do what’s wise and what’s safe?

Melanie House:
The most important thing I can say is there’s no better time to start than now, and finding those things‑‑you know, think about what is it that’s important to me? What am I missing out on in my life that I want to get back to, and consult a professional to help them‑‑they will help you achieve those goals to get back to doing those things as best and as safely as possible.

Andrew Schorr:
I’d agree. You know, I have to get immunoglobulin treatment once a month for my‑‑related to my leukemia. Some other people may get that too. And yet in those times like now, in between, I travel. And, you know, so I’m going on with my life and thank god have energy and can do those steps I talked about. So I would urge you to go live your life. And your healthcare team will help you. You can do this exercise or that. And there’s Jim who’s not going to get up on the step stool, but he’s going to do that 328‑mile bike ride for the 12th time. Okay.

So, Alexa, a final comment from you about what you’d say to people about proper nutrition wherever they are in their myeloma journey. What would you say to them?

Alexa Welch
I would say listen to your body. If your body is telling you I’m hungry, eat. If your body is telling you I’m not hungry, maybe not eat but also recognizing that if that’s all day long that you’re not hungry maybe you need to set an alarm on your phone to make sure you’re eating properly. Wherever you’re at in your journey it’s important to listen to your body until your body can’t tell you what it needs anymore, and then after that then you need to start kind of taking over‑‑your mind has to take over and listen to what you need.

Maintaining your weight. And then, like I said, whenever you can eat from all the food groups, and then in the meantime when your struggling to maintain your weight or eat enough overall you want to use those supplements when necessary while talking to your medical team. And supplements I mean by the high‑calorie, high‑protein shakes, not necessarily the herbal supplements.

Andrew Schorr:
All right. Great information. And one great thing I take away from you too is should I need a transplant some day or I’m going through chemo again a chocolate milkshake is okay.

Alexa Welsh:
Yes, absolutely.

Andrew Schorr:
All right I won’t feel guilty about the ones I’ve had in the past. So, Jim, we’re going to leave it with you. So you have this bike ride coming up, the 12th one, for fund‑raising for the American Cancer Society that you wife started in Ohio, god speed to you, Jim. Are you feeling pretty good?

Jim Bond:
I am. I am. I had to shake off a bout of pneumonia a month ago, but I got the clearance to get back on my bike about three or four weeks ago. And they said, take it easy, and if you get tired, you know, get off your bike‑‑and I will‑‑and, you know, I’ve proven I can do it, but, you know. I think we have to all use our common sense on this stuff and live your life like you said. And we can do it. We can be long‑term survivors.

Andrew Schorr:
All right. Well, all the best to you. We are all riding with you, Jim Bond, okay?

Jim Bond:
Thank you.

Andrew Schorr:
All the best. Well, I want to thank Jim joining us from Cleveland getting ready for the bike ride in a couple days. Alexa Welsh joining us from the University of Iowa Hospitals in Iowa City, thank you so much, Alexa. And also Melanie House, joining us once again also from the University of Iowa Hospitals. Great information. Thank you so much.

I want to thank the Patient Empowerment Network for letting these programs flow and what a wonderful service it does to our myeloma community. And I want to thank the companies that have helped fund this program, AbbVie, Takeda and Celgene, thank you for being supporters of the myeloma community.

Remember, there’s a replay that will be available to you soon. Share it with others you know in the community. There will be video clips and sound clips with Jim that will be coming up. There will be a transcript, all coming your way. And discuss it and make sure that you connect with not only other people in the community but people like Alexa and Melanie who are very specialized, who can help you have the right diet and the right exercise for you.

In Quebec City, Canada, I’m Andrew Schorr. Thanks for joining us. Remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Myeloma Patient Cafe® August 2017 – Self-Education and Empowerment

Patient Cafe® Multiple Myeloma – August 2017 from Patient Empowerment Network on Vimeo.

In this session of the Myeloma Patient Cafe®, a group of myeloma patients discuss self-education and empowerment.

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Patient Cafe® Multiple Myeloma – July 2017 from Patient Empowerment Network on Vimeo.

In this session of the Patient Cafe®, a group of myeloma patients will discuss what life is like now that they are living with myeloma.