Best Practices for Finding Multiple Myeloma Resources from Patient Empowerment Network on Vimeo.
There may be an abundance of resources on the internet, but which are reputable? Myeloma patient advocates discuss the best practices to locate specific resources for newly diagnosed patients.
See More from Your Path to Empowerment | Myeloma
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What Key Questions Should Myeloma Patients Ask About Treatment? |
Path to Empowerment: Multiple Myeloma | Newly Diagnosed Replay from Patient Empowerment Network on Vimeo.
A new multiple myeloma diagnosis can bring up many unexpected feelings. Hear from a panel of myeloma patient advocates who share their personal experiences, advice and various resources.
See More from Your Path to Empowerment | Myeloma
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What Should You Ask Your Doctor About Myeloma Testing? from Patient Empowerment Network on Vimeo.
Testing and test results may affect your myeloma care and treatment. Dr. Nina Shah, a myeloma expert, shares key questions to ask your doctor about testing and reviews testing techniques for myeloma.
Dr. Nina Shah is Associate Professor of Medicine in the Fepartment of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.
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Katherine Banwell:
If a patient wants testing beyond the standard, what should they be asking their doctors for?
Dr. Shah:
Well, thankfully a lot of these tests can be done as a standard. We actually have some approved testing for it. So, the most important thing is to ask the doctor at all. For example, the patient may ask, 1.) “When will my next bone marrow biopsy be?” and 2.) “When I get that bone marrow biopsy, will you be looking at cytogenetics and FISH?” and 3.) “When you get the bone marrow biopsy, will you be also looking for minimal residual disease?” And finally, “What technique will you use to look for that minimal residual disease?” There are different ones that the patients might find useful to know about.
Katherine Banwell:
What are some of the different techniques?
Dr. Shah:
There are a variety of ways that we can look for minimal residual disease. One of them is called flow cytometry. What that is is you send all the cells that are in the bone marrow through a chute, and in that chute you can sort of detect one or however many cells that are – that have a specific characteristic on their cell surface.
You think of it as a bunch of balls with lollipops sticking out of it. And based on the characteristics of those lollipops, you can tell if there are any plasma cells or myeloma cells. Another thing we do with minimal residual disease, another technique, is called the next-gen sequencing or NGS.
And for that, we need to know the specific DNA sequence that is very personal to your myeloma cells. So, your particular plasma cell or the cancer cell will have a sort of sequence, a specific sequence that can be identified when you’re first diagnosed. And if you have access to that tissue, that can be sent off to the company, and they use that as sort of a template or a measure – an individual identification. And then, they scan the subsequent bone marrow samples against that to see if there’s any sequence that matches that original one, and that’s the way you can detect one in a million positive cells, if there are any.
How Is Minimal Residual Disease (MRD) Testing Used in Myeloma Care? from Patient Empowerment Network on Vimeo.
Myeloma expert Dr. Nina Shah explains minimal residual disease (MRD) and how the results of this test may impact patient care and treatment.
Dr. Nina Shah is Associate Professor of Medicine in the Fepartment of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.
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Katherine Banwell:
What is minimal residual disease testing, and when should it take place?
Dr. Shah:
Minimal residual disease is exactly what it sounds like. It’s the disease that you can’t see under the microscope, but it’s still there.
And I sort of equate it to the little deep food particles that are in a pot after you clean it and really, really scrub it, but still, something is in there. And that’s what it is for myeloma. And really, that depends on how sensitive your test is. We now know we can test for at least one in a million cells by some advanced techniques, and we like to test to see if there’s any disease left after certain treatments are done – for example, after a patient undergoes an autologous stem cell transplant.
Katherine Banwell:
What impact do results have on care decisions?
Dr. Shah:
Minimal residual disease testing can be useful for patients to understand the true burden of their disease. For example, it may be that there’s no more M-protein in the blood, or the light chains are normal, or even the bone marrow showed no plasma cells. But the minimal residual disease testing may show that, in fact, there are a few cells still in there, and that can help patients to decide, “Yes, I want proceed with maintenance therapy,” for example, or “No, I would not like to.” Although, we generally recommend it, patients like to have as much information as possible to make their decisions.
How Are Cytogenetics Used in Myeloma Care? from Patient Empowerment Network on Vimeo.
Myeloma expert, Dr. Nina Shah, explains cytogenetics and how results of these tests affect care and treatment for myeloma patients.
Dr. Nina Shah is Associate Professor of Medicine in the Fepartment of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.
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Katherine Banwell:
What is cytogenetics, and how is it used in myeloma patient care?
Dr. Shah:
We use the term cytogenetics and FISH sort of interchangeably, and really what it is, is the DNA characteristics of the bad plasma cells. So, the myeloma cells, and a lot of them may have changes in their DNA that are what we call clonal, meaning that they’re in a significant percentage of those cancer cells, or they might be non-clonal, which are less significant. But it’s the way the DNA is put together or maybe cut and pasted so that it changes the characteristics and maybe the aggressiveness of the disease.
Katherine Banwell:
What is the goal of this in-depth testing? Are there specific markers you’re looking for?
Dr. Shah:
When we look for things like cytogenetics and send FISH testing, we look to see if patients have changes that might make their disease may be more aggressive.
For example, it may cause their plasma cells, the myeloma cells, to grow faster or more aggressively. So, we look for changes that might, for example, have a deletion of a certain chain that puts the brakes on tumors, or it may have a translocation, which is when the chains sort of do-si-do together and that makes the cells grow faster.
Understanding Your Role in Myeloma Treatment Decisions from Patient Empowerment Network on Vimeo.
Many factors are considered when choosing a myeloma treatment. Dr. Nina Shah, a myeloma expert, reviews how treatment decisions are made and the patient’s role in deciding on an approach.
Dr. Nina Shah is Associate Professor of Medicine in the Department of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.
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What Key Questions Should Myeloma Patients Ask About Treatment? |
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Katherine Banwell:
What are the main factors that you take into consideration before a treatment approach is decided on?
Dr. Shah:
We always have to remember that treating a patient is also treating a person. So, it’s not just about what the disease the patient has but who the patient is. And so, we take into consideration goals that the patient as well as other health factors that may take – be taken into consideration. For example, the patient may have high blood pressure or a heart condition. But regarding the disease, we really also take into consideration what the profile of the disease is, maybe how much disease burden the patient has and some genetic factors that may impact our decision-making.
Katherine Banwell:
What is the patient’s role in treatment decisions?
Dr. Shah:
The patient should always be the center of the decision-making. I think that’s a really important thing for us to remember because ultimately, it’s the patient who has to make the decision and has to withstand the treatment. Alongside of that there may be some caregivers as well, but the patient has to, 1.) understand the disease, and 2.) understand the treatment options. So, it’s best if the patient has as much information as possible.
Katherine Banwell:
Are treatment considerations different for patients with relapsed disease?
Dr. Shah:
For patients with relapsed disease, there’s a lot of things to consider that may not have been true when the patient was first diagnosed. For example, you always have to think of what maybe the patient had as a prior – excuse me, as a prior treatment, and also how the patient tolerated it.
What You Should Know About Myeloma Clinical Trial Participation from Patient Empowerment Network on Vimeo.
Myeloma expert Dr. Nina Shah shares her view on why patients should consider a myeloma clinical trial and provides advice for finding and participating in a trial.
Dr. Nina Shah is Associate Professor of Medicine in the Department of Medicine at the University of California San Francisco (UCSF) and treats patients at the Hematology and Blood and Marrow Transplant Clinic at UCSF Helen Diller Family Comprehensive Cancer Center. Learn more about Dr. Shah, here.
Myeloma Treatment: When Should a Clinical Trial Be Considered? |
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Katherine Banwell:
Why should a patient consider participating in a clinical trial?
Dr. Shah:
I am a huge fan of clinical trials, as you probably figured out. And the reason for that is that it’s the only way we know how to do things. And for everything we figured out about myeloma, it’s because patients participated beforehand in clinical trials. So, of course, it’s a way to pay it forward. But aside from that, there’s an experience that a patient can have on a clinical trial that is really unlike other experiences that patients may have. For example, they will be given the opportunity to understand a lot about their disease that maybe they may not have understood before, and they may have the opportunity to try a treatment that might be beneficial.
There are no guarantees in a clinical trial, and that informed consent procedure where the doctor tells you about the risks, benefits, and alternatives, should be very comprehensive and clear. But it does allow for patients to get access to something they may not have had before. And I think one of the other things that’s important is that it’s sort of a concierge service, I would say, with clinical trials, because you have to be monitored very closely. So, of course, all your symptoms have to be known. And you get a little bit more time, I would say, when you participate in a clinical trial because we really want to know the pluses and minuses of these treatments.
Katherine Banwell:
How can patients participate in research? Where do they start?
Dr. Shah:
Participating in research is a great opportunity for patients and something that we’re grateful for as myeloma physicians. There are many ways to look on various websites. There are things like SparkCures. There’s ClinicalTrials.gov. You can look at any academic website. Almost all advocacy groups also have opportunities for you to look at clinical trials.
And any time you get the opportunity to look at patient education sites, they may have a link for you to look for other clinical trials that might be relevant to your particular stage in disease or the particular kind of myeloma that you have. When in doubt, please, if you have a chance, talk to your local oncologist perhaps to maybe refer you to a myeloma specialist. We can do this by Zoom now, so there should be no reason that we can’t be a part of your care team at least for a consultation.
How Does Myeloma Testing Affect Care and Treatment? from Patient Empowerment Network on Vimeo.
What is cytogenetic testing in myeloma? Donna Catamero, a nurse practitioner specializing in myeloma, describes this in-depth testing, including the FISH test, and how the results impact the care of patients.
Donna Catamero is Associate Director of Myeloma Translational Research at Icahn School of Medicine at Mount Sinai Hospital in New York City.
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Myeloma Test Results and Factors That Impact Treatment Decisions |
What Key Questions Should Myeloma Patients Ask About Treatment? |
Katherine:
Blood and urine tests, bone marrow biopsy and imaging tests are all standard following a myeloma diagnosis, but what about more in-depth testing?
Because the terminology around biomarker testing varies, can you help break this down for patients, and how this in-depth testing is referred to in myeloma?
Donna:
So, biomarkers is a term that is commonly tossed around in many different cancer diagnoses and it means different things. But in general, it’s characteristics that can inform us about a diagnosis, about a patient’s prognosis and about their response to treatment. So, this can include things that we measure in the bloodwork, in the urine, even imaging. These are all things or markers that we look at to determine a patient’s either, like I said, response or risk stratification.
Katherine:
What about cytogenetics? What is that exactly and does that fit under the umbrella of biomarker testing?
Donna:
Yeah, so cytogenetics is a genetic snapshot of a patient’s cancer. So, it will give us a sense of how the disease will – the characteristics of how it will behave. But again, it’s just a snapshot and it’s not a precise science but certain mutations or certain genes will kind of inform us like “This might be maybe a more aggressive form and we need to do X, Y and Z.”
Katherine:
Which of these more in-depth tests are necessary in myeloma? Let’s start with the FISH test.
Donna:
So, FISH is a cytogenetic technique. So, what we do is, when we do the bone marrow, we send that off and we look at the genetics. Like I said, it’s a snapshot. And certain mutations will put patients in different risk stratifications, so we normally do this at the time of diagnosis and then with each relapse.
Katherine:
It seems that all of the test results can aid in determining outpatient’s risk. So, why is risk stratification so important?
Donna:
So, risk stratification is important.
It will give us a sense of how a patient might respond to certain treatments. Maybe a patient won’t respond as well to a stem cell transplant as someone with standard risk. So, we take this into account, but in this current time, in 2021, we don’t typically change our treatments according to risk. That’s why clinical research is very important because we’re studying right now patients with high-risk cytogenetics, do they do they better on certain therapies.
Katherine:
How do the results of these tests affect treatment choice and prognosis?
Donna:
So, someone who might have high-risk cytogenetics, we might want to be maybe more aggressive with our therapy. So, we might change how we want to maintain a patient. Usually, after a stem cell transplant, we give patients maintenance therapies. So, patients who have high-risk disease, we might change our strategy and have a more aggressive regimen in that maintenance setting. And with patients with higher risk, we probably will monitor them very, very closely in case – looking for signs for relapse.
What Key Steps Should Follow a Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.
A myeloma diagnosis can be overwhelming, so where do you start? Donna Catamero, a nurse practitioner specializing in myeloma, shares key advice for patients and encourages self-advocacy to access the best care.
Donna Catamero is Associate Director of Myeloma Translational Research at Icahn School of Medicine at Mount Sinai Hospital in New York City.
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How Can Myeloma Patients Take an Active Role in Their Treatment and Care? |
Katherine:
Donna, would you please introduce yourself for us?
Donna:
I’m Donna Catamero. I’m a nurse practitioner at the Mt. Sinai Hospital in New York City, where I focus on clinical research and treatment of myeloma patients.
Katherine:
So, as a nurse practitioner specializing in myeloma, what’s your role in the healthcare team?
Donna:
So, I have several roles. So, the first role is caring for multiple myeloma patients, in particular, treating patients on clinical trials, managing their side effects, managing their treatment. My other role is a nurse educator. So, I help train our nursing staff and our research staff on myeloma, new therapies, “Myeloma 101”. So, I really help train and on-board our new staffing.
Katherine:
Excellent. When first diagnosed with myeloma, what three key pieces of advice do you have for patients and caregivers?
Donna:
So, number one is be your best advocate. So, learn everything you can learn about your disease. Learn about the treatments, the side effects, the treatment schedules. Don’t be afraid to ask questions and it’s okay to ask a question multiple times because we might not commit it to memory. So, learn as much as you can; learn how the drugs work. That’s why I’m saying knowledge is power and really, knowledge will lead to you being your best advocate.
And number two, it’s okay to have a second set of ears with you. So, sometimes the situation might be overwhelming and we might not hear or understand what’s being told to us. So, it’s important to have someone, a loved one, a caregiver, with us, so that they can also hear what the healthcare team is telling them. And I know in the day and age of COVID, there may be restrictions for visitors in the healthcare setting, but we can do recordings. We can have loved ones on the phone, so that they can hear what’s being told. And number three, is do not be a martyr. There’s no need for anyone to suffer.
If you’re in pain, let your team know. We can provide a lot of supportive care and get you through the most difficult times of your diagnosis.
Katherine:
Why is it important that patients engage in their care and treatment decisions?
Donna:
We have many options we can offer patients. Back in the day when I first started in my nursing career, we had only a handful of treatment options for patient. Now, we have an entire toolbox of treatments we can offer patients. So, it’s important to understand the treatments, the side effects, the schedule, and see if that aligns with your treatment goals so that this way you can make a very informed decision.
Multiple Myeloma: Thomas’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.
At the age of 34, Thomas was diagnosed with multiple myeloma. After multiple treatments, including an autologous stem cell transplant, Thomas shares why it’s critical to increase participation in clinical trials so we can understand why multiple myeloma poses a greater risk to certain populations. In Thomas’ own words, “Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma.”
2021-08-17_thomasIllustration_v2 (1)See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles
Thomas:
My name is Thomas, and this is my multiple myeloma story. At age 34, I was healthy and enjoying life. I went to the gym daily, and when I wasn’t working out, I was shooting hoops with my friends.
During a workout, I suddenly felt excruciating pain in my left shoulder. My family physician declared I had bursitis, but I was so young and in such good physical shape, I knew by instinct that the diagnosis was wrong. I made an appointment with a sports medicine doctor, who ran CT and MRI scans of my upper body. The result wasn’t good. I was diagnosed with multiple myeloma, a cancerous tumor of plasma cells in my left scapula.
Because the myeloma was localized to my shoulder, my oncologist recommended 6 weeks of radiation therapy. 10 months after the treatment, the agonizing pain returned, but this time in my lower back. The pain was so intense, I remember lying on the floor, unable to move. My myeloma has spread to my lower backbone and right ribs. This time, I received an autologous stem cell transplant, but after 2 months, I relapsed again.
Still determined, I agreed to participate in a clinical trial to receive an allogeneic stem cell transplant using human leukocyte antigen (HLA)-matched donor cells from my brother Earnest. This time, I lived cancer-free for two years before relapsing. To keep the cancer from progressing, I joined another clinical trial to receive a second allogeneic transplant using my brother’s donor cells. This aggressive treatment also included an intensive conditioning regimen of high-dose chemotherapy plus total-body irradiation. Although the therapeutic effects were serious and kept me hospitalized for 127 days, the transplant was successful and pushed back my cancer for another two years.
Since then, my cancer has relapsed multiple times, but I refuse to accept defeat. Although my cancer is unlikely to be curable, my current treatment has been successful at keeping the myeloma from advancing. I’m hopeful that I can live a long life while treating it as a chronic disease. I want to share my story as a Black person with multiple myeloma to raise awareness of this rare cancer. African Americans are twice as likely to develop multiple myeloma compared to whites, and are also more likely to be diagnosed at a younger age1.
It’s critical we increase the participation of Black people in clinical trials so we can understand why multiple myeloma poses a greater risk for Black people, and get closer to a cure. Participating in clinical trials is contributing to research for tomorrow’s medicines, and an opportunity to make a difference for myself and for others facing multiple myeloma.
How Can Myeloma Caregivers Provide Support? from Patient Empowerment Network on Vimeo.
Some multiple myeloma caregivers may be unsure or overwhelmed in how to move forward in supporting a patient. Expert Dr. Rafael Fonseca shares advice for caregivers to assist in practical matters, decision-making, and providing emotional support to their loved one.
Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.
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What Key Questions Should Myeloma Patients Ask About Treatment? |
Katherine:
We have a question from the audience. This one is from Sarah. Her question is, “What advice do you have for caregivers? How can I be supportive during appointments?”
Dr. Fonseca:
That’s a great question.
I have experienced this both as a physician, as well as a caregiver myself to someone who has had a cancer. I think I’m going to say that there are several roles that caregivers play. Some of them are obvious and I’m going to call them practical or perhaps even pedestrian, you know, organizing the activities of every day. That’s important, but a lot of people can do that. The second role is to be in assistance for the knowledge that is needed for some of this decision-making. Sometimes patients can be overwhelmed, and we need some support and some vetting and peer process from a trusted and loved person so you can go through that.
That is very helpful, but what is essential, and the number one thing is you are first and foremost the loving family member or friend of that individual who is living through a very profound human experience. I think the first role of a caregiver has to be to express that role.
I, myself, reflect on moments where perhaps in a quick, reactive way I wanted to solve some of the immediate practicalities and what was needed most was a direct support. Even if I face a situation today, if I was, again, a caregiver for someone with a serious diagnosis with cancer, I would start with that priority. Number one, you are the support and the loving person. Number two is I will try to provide information. And number three, hopefully you can help with meals and the driving and what have you. But there’s many more people who can come and help in that regard. Not a lot can do the first part.
Who Is On Your Myeloma Healthcare Team? from Patient Empowerment Network on Vimeo.
Myeloma patients have key team members involved in their treatment and care. Expert Dr. Rafael Fonseca provides an overview of the members of the healthcare team and how they play a role in providing optimal patient care.
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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How Can Myeloma Patients Take an Active Role in Their Treatment and Care? |
Katherine:
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.
How Does Myeloma Begin and Progress? from Patient Empowerment Network on Vimeo.
Myeloma expert Dr. Rafael Fonseca explains where myeloma begins, how it develops over time, and defines key terms for understanding myeloma.
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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How Can Myeloma Patients Take an Active Role in Their Treatment and Care? |
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Katherine:
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.
Are COVID-19 Vaccines Effective for Myeloma Patients? from Patient Empowerment Network on Vimeo.
Myeloma expert Dr. Rafael Fonseca shares what’s currently known about COVID-19 vaccine immune response and what he advises for his patients for their optimal protection.
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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NCCN Guidance on Safety and Effectiveness of COVID-19 Vaccines for Cancer Patients |
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Katherine:
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 are 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.
Multiple Myeloma: Danielle’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.
Multiple myeloma patient Danielle was a very active person – and even went on vacation – right before receiving her diagnosis. Her myeloma journey unfolded with her myeloma symptoms, diagnosis, treatment, and participation in a life-altering clinical trial. “I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure.”
See More from Patient-to-Patient Diverse Myeloma Clinical Trial Profiles
Danielle:
Hello, everyone. My name is Danielle.
My myeloma story began in 2011. I was experiencing pain in my hip and my back area, and it was the pain that would come and go. I was also very lethargic in 2011 and couldn’t understand why I was so extremely tired, so I thought the pain in my hip and back area was due to sciatic nerve, and I just didn’t do anything about it, ignored the pain. My husband and I went on our first trip without our sons in October of 2011, and two days before the trip, I developed this really bad nasty pain in my hip and leg area, which actually altered my walk, but I had no idea what the heck was going on, and so I was so frustrated that I… As soon as we got home, I went to see an orthopedic doctor because at that time I was working out like five times a week, so I thought maybe I pulled something, a pinched nerve or something. So I went to see him, he took X-rays, I believe it was an MRI, couldn’t be sure, but when I went back to get my test results, he sat me down and said, “Mrs. Spann, there’s a mass here in your fibula, and I’m going to recommend you to an orthopedic oncologist.” So, that was the very beginning of my diagnosis, initial diagnosis. Of course, I was in denial because I’m like, I knew what an oncologist was, but he must not be talking to the right person, but I went ahead and I met with the orthopedic oncologist. He ran a bunch of tests and mentioned to me that I had myeloma, which is concentrated in one area, which was my fibula, and then he recommended that I have my fibula removed on my right leg. Two days before surgery was scheduled, I received a phone call from his office, saying, “Mrs. Stann, you have lytic lesions all throughout your skeletal structure, and we’re recommending that you go see a bone marrow transplant oncologist.” So now it’s becoming real. The diagnosis is what it was, and I just wanted to know how I could basically fight this. I’m the type of person where you tell me one thing and let’s try to find a solution, so I met with the bone marrow transplant specialist, the oncologist, and then we formulated a plan, and that plan was for me to go on my first study trial. And so that was my introduction into my having multiple myeloma.
I made the decision to participate in a trial, because I trusted my doctor. He had the expertise to understand where my myeloma was, the counts, how aggressive it was, and he recommended that I go on the study trial. He also told me that if the study trial was not going to work for me, or if it wasn’t helping me, that he was going to take me off the study trial. So, I was on the study trial from like January to March…to the end of March, and he sat me down and said that it was not working, my numbers weren’t really moving, and that he was taking me off the study trial. And he took me off the study trial, there were some other treatments that were involved, and then I had two stem cell transplants. After the transplant in 2012, I went ahead and started another treatment regimen, and I was on that for several years, which worked well. My numbers were coming down, but then unfortunately they started going back up, so he mentioned that I should go on another study trial. I weighed the odds, and I knew that he would not lead me down the wrong path. So, I went ahead and I participated in the study trial that I’m still on today, and I’ve been on it for about three, four years.
I decided to do the study trial because I also wanted to help individuals. If it wasn’t going to help me, then my data that they collect from the study trial will definitely help the scientists, researchers, the doctors. It would help them try to find a cure. And so that’s what I wanted to help in some form or fashion, and when I first was diagnosed going to the Winship Cancer Center twice a week, there was a quote that was posted in the cancer center, and that quote was by Dr. Martin Luther King Jr., the quote read, “Life’s most important and persistent question is, ‘What have we done to help others?’” And I would go into the center and I’m like, “Yeah, what have I done to help others?” And me participating in the study trial, I felt like I’m helping others indirectly, and it wasn’t always just about myself, it was, “Okay, yes, the study trial gives the data, and it’s helping me, but it’s also helping that next person as well.”
So, I always look at my life as before diagnosis and after, and my after does not look like my before, I can’t do the same things, I can’t do the same things that I used to do. And one of those things is going to the mall and being in there like 10 hours, that’s so remedial, but it just goes to show like I cannot exert myself the same type of energy that I could before diagnosis. And again, that’s my new normal. I stay positive with everything in life, things happen, but you just have to do what you can to make it better, no matter what it is.
I am happy and proud and so grateful and thankful to mention that as of January 2021, my myeloma is 0% detectable, which means there’s no presence of multiple myeloma in my blood, in my urine, nor in my bone marrow. And so I’m still on a study trial, and I have two different chemo meds that I have to take, and I just act accordingly if I know that one of the chemo meds that I have to take twice a week gives me an upset stomach. I just accordingly in finding different ways to push through it. It is what it is, and my motto when I was having my bone marrow transplants was, “This too shall pass.” And so no matter what I’m going through in life, no matter how down I get. This moment will pass. And so tomorrow, you’ll look back on today and say, “You know what, I did it, I made it.” And you’ll do that for the next day, until you realize that you’re just constantly defeating that previous day, and you’re moving forward.
So, I’ve heard the terminology of a clinical trial, never really paid attention to it because I never had to…I had an idea what the clinical trial was. But once it really came home to me, I realized that, in my words, the clinical trial is collecting the data necessary, they’re going to give you the trial medication, because they’re looking to get this, this medicine approved to put on the market. These medications would not get approved by the FDA, acetaminophen (Tylenol) at one point had to go have a study trial and then get approved by the FDA and then can be distributed to the masses. And so it’s the same with these other drugs. We need individuals to participate positively, knowing that if this is not helping me right now, it will help someone in five years, in two years, in 20 years. The advice that I would give is to trust your doctor, your doctor would not recommend a study trial if he felt that there was a medication that’s already on the market that would help you better. If the study trial you’re on is keeping you with your family, and at the same time is…the scientist, the researchers they’re gathering all this data, it could come to be an actual medication in three, five, seven years. And so just think of it as something that you’re helping society…and your fellow…and your fellow man.
