Tag Archive for: second opinion

My Self-Advocacy Journey With Ultra High-Risk Multiple Myeloma

My Self Advocacy Journey with Ultra High-Risk Multiple Myeloma from Patient Empowerment Network on Vimeo.

Multiple myeloma patient Lori shares her journey to diagnosis and treatment. Watch as she explains the varied symptoms that she experienced, the benefits of a second opinion and clinical trials, and her  advice to other patients.

Related Resources:

How to Thrive and Set Myeloma Treatment Goals

Expert Advice for Newly Diagnosed Myeloma Patients

Multiple Myeloma Danielle’s Clinical Trial Profile


Transcript:

Lori:

My name is Lori, I’m from Portland, Oregon. I was diagnosed at age 60 in June 2019 with ultra high-risk multiple myeloma. The road to my diagnosis was long and regrettably all too common.

I have always been very healthy and active. I believe my healthy history clouded my doctor’s ability to connect my symptoms to anything serious.

My journey started with chronic fatigue and needing extra sleep. Then came horrible headaches followed by shoulder and back pain, frequent infections that didn’t clear with antibiotics, and severe nose bleeds. 

In May 2019, I had my annual exam that included a blood draw. I later learned I was tested for diabetes and cholesterol but none of the basic blood panels that flag abnormal values. I went into my exam with my laundry list of issues, but was given a clean bill of health.

Four weeks after this exam I was traveling in Kenya on a safari.  I felt very sick during the trip, but I assumed I had picked up something on the long flight.  When I returned  home I could barely get out of bed. I collapsed in the middle of a dinner with some doctor friends who insisted I go to the ER where they held me overnight to perform additional testing. They discovered severe anemia and that my basic blood panels hadn’t been ordered for a number of years. I continued to think it was some odd African bug until the doctors arrived the next day to share the suspected diagnosis of multiple myeloma. I was in shock and very afraid.

I sought a second opinion and I was extremely fortunate to begin my treatment at Seattle Cancer Care Alliance. In July 2019, I was started on KRD induction therapy. Our journey was further rocked when our insurance declined coverage for carfilzomib, which was nearly $20,000 for two infusions each week. The insurer insisted I fail on the standard treatment before I could be approved.  I knew from reading how essential the first line of therapy is.  With Seattle Cancer Care Alliance’s help, I was finally approved due to my high-risk status. However, it took months to finally receive approval, and I had to take care of stressful, expensive bills while also completing my treatment.

Treatment was exhausting and required me to drive 3 hours each way each week from Portland to Seattle.  We needed to spend at least one night each week in a hotel. By October 2019, a bone marrow biopsy analysis showed no myeloma cells. I was reminded of the spotty nature of myeloma and the limits of biopsy testing, but I was extremely encouraged. 

At diagnosis, I was given a 20 percent chance of a 5-year survival. I am now 3 years post-diagnosis, and I am in remission.

Some of the things I have learned during my multiple myeloma journey are:

  • Ask your primary care doctor what tests have been ordered and request a comprehensive blood panel if you suspect something is wrong and not being adequately addressed.
  • Seek a second opinion at a cancer center that combines patient treatment and research. 
  • Clinical trials and new treatment combinations can be effective even for high-risk disease. 
  • Work with your doctors to get insurance approval for the protocols they recommend.
  • Empower yourself by learning about treatment options and new therapies.  
  • Be encouraged that there are so many positive advancements happening in multiple myeloma.

These actions are key to staying on your path to empowerment.

Myeloma Patient Profile: Jeff Boero

When Jeff Boero shares his multiple myeloma patient journey, it’s clear that self-education has been a vital part of his experience. He was first diagnosed through his primary care physician who referred him to a general oncology group in the San Francisco area. They confirmed it was multiple myeloma. It soon became clear to Jeff and his wife that he perhaps needed a second opinion, and he was connected with the University of California San Francisco (UCSF) to their multiple myeloma specialist. 

The second opinion changed the approach to Jeff’s care rather dramatically. He was quickly scheduled for a stem cell transplant and subsequent maintenance after that. As Jeff recalls, “Through UCSF, I became eligible for a CAR T-cell immunotherapy trial in 2017. That was very successful and kept me disease-free and medication-free for about 2-1/2 years. And then I relapsed and went on another maintenance program. I became eligible for another clinical trial for a bi-specific T-cell engager (BiTE) that I’m on now and am having good results.”

Jeff was almost in complete denial about his diagnosis for the first 6 months. The diagnosis threw him into a world of terminology and treatment that was completely foreign to him. That sense of his diagnosis feeling foreign also started to lead into a certain level of depression — just not knowing what it is, how is it going to be treated, what it meant to his long-term survival. Jeff remembers, “So, with the encouragement of my wife as caregiver, I became more educated as I engaged in various conversations with specialists and participated in some of the PEN webinars. It  became clearer to me about what some of the options are and what they can be. Being engaged with UCSF really opened up the treatment options. With me becoming more educated and able to speak the language of myeloma, I was starting to understand the diagnosis as it was presented by UCSF. And it led to a much richer engagement in conversation with the oncologist and with the nurse practitioners.” 

As a cancer patient, Jeff views self-education as the key to empowering patients toward better care. It was through self-education that he learned about other options. Before becoming more educated, Jeff was mostly just listening and trying to absorb as much as he could and seemed to remember mostly bad news. According to Jeff, “There’s so much good news around myeloma treatment and available therapies. It was through self-educating and those conversations that my outlook brightened too.”

By patients educating themselves, they can start to ask questions about the clinical trial like: “What is it, and why is it going to show better results than my maintenance therapy?” And in conversation, patients can start to better understand the purpose of the clinical trial. “I think it’s important for patients to understand what they’re trying to accomplish through the clinical trial that wasn’t through their maintenance therapy. What is it about this trial that’s different that we haven’t addressed previously?” But patients can’t ask those questions unless they have at least a basic understanding of their cancer and how the various therapies approach the cancer cell. “But if you listen to webinars and things like that, you’re better able to have those conversations. As a matter of education as these opportunities arise, you’re able to have a much richer conversation with your oncologist and your care team about the benefits that could potentially be derived from the clinical trial.” 

Clinical trials have benefitted Jeff, and he recommends seeking an opinion that is dedicated to research of your specific cancer. Learning institutions have more access to emerging research and treatments that likely won’t be FDA-approved until 2 or 3 years later. “So if you as a patient can be at the forefront of some of these trials, that can be tremendous. I’m on therapies now that didn’t even exist when I was diagnosed. Research is moving quickly.”

Jeff senses some hesitancy among patients about clinical trials. “There’s this misconception that if you join a clinical trial, one group is getting the real stuff, and one group is getting the placebo. And the trials that I’ve been in, everybody gets the real thing, and everybody’s progress is tracked on their response to the real thing.” He knows trials can seem intimidating. Jeff went through his initial clinical trial, because he was almost out of options for conventional maintenance therapy. His cancer burden continued to increase, and he’d been through a number of different treatments. “The CAR T-cell program came up and seemed to be a perfect fit for me. So I did the clinical trial partially out of necessity, but I also had extreme confidence in my oncologist that he was promoting something that he thought would be most beneficial for me. I think it’s a matter of putting trust in your oncologist. Maybe I’ve been lucky, but I’ve had good results and good response to both clinical trials.” He also feels that the sponsoring institution will give an honest appraisal of where the program stands and what the progress and success has been up to that point. 

Reflecting on the value of Patient Empowerment Network (PEN) and other resources, Jeff says, “I’ve gotten so much out of the PEN webinars that are provided and some other organizations. I’m a slow learner in this area but am absorbing as much as I can. I need to hear the same thing a few times before I start to absorb it and fully understand it. So I rewatch the PEN webinars, and it works for me.” He also suggests learning as much as one can but was advised early on to stay away from Google. “There’s so much out-of-date information. Whereas websites like Patient Empowerment Network’s and others have updated information that’s far more relevant. And I also find the navigation on the PEN website very easy to use.”

After meeting patients who don’t have the same level of health insurance benefits, Jeff feels a sense of gratitude. “I had tremendous support from my employer who in essence said take the time you need to get yourself well again. So I have a lot of gratitude for that support, my wife as caregiver, family, social support, my faith community, and for my proximity to UCSF that makes treatment very practical and very possible.” It’s opened his eyes in that regard. There are so many benefits that he has that others don’t have. “I’ve joined various support groups initially to gain support. Now things have come full circle, and I find that I’m at the other end of the conversation to give people comfort in what they could possibly be doing to improve their situation.”


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Is It Too Late for a Myeloma Second Opinion?

What Do You Need To Know About Bladder Cancer? 

What Do You Need To Know About Bladder Cancer?  from Patient Empowerment Network on Vimeo.

What should you or your loved ones know following a bladder cancer diagnosis? This animated video reviews the diagnosis and types of bladder cancer, current treatment options, and key advice for taking an active role in your care.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

The Importance of Self-Advocacy in Bladder Cancer Treatment

Key Advice for Newly Diagnosed Bladder Cancer Patients

Key Advice for Newly Diagnosed Bladder Cancer Patients

Current Treatment Approaches for Bladder Cancer

Current Treatment Approaches for Bladder Cancer


Transcript:

What do you need to know if you or a loved one has been diagnosed with bladder cancer? 

Bladder cancer occurs when cells in the urinary bladder grow out of control. As more cancer cells develop, they can form a tumor. And, over time, may spread to other parts of the body.  

The most common type of bladder cancer is transitional cell carcinoma or T.C.C.. This may also be referred to as urothelial carcinoma. Other subtypes include: Squamous cell carcinoma, adenocarcinoma, small cell bladder cancer and, sarcomatoid carcinoma. 

How bladder cancer is treated depends on the stage. The stages of bladder cancer include: Stage 1, which indicates that the cancer is growing in the inner lining layer of the bladder only.  Stage 2 occurs when the cancer is growing into the inner or outer muscle layer of the bladder wall. Stage 3 means that the cancer has grown beyond the muscle layer and into fatty tissue that surrounds the bladder. And, Stage 4 indicates that the cancer is growing outside of the pelvic region and has spread to distant sites, such as the lung, liver, or bones. When cancer has spread to other organs in the body, it is considered metastatic cancer. 

When making a treatment choice, your doctor may also consider age, any comorbidities, potential side effects, and the results of biomarker testing, as well as that patient’s preference. 

So, what are the treatment options for bladder cancer? For early stage, or non-muscle-invasive, bladder cancer patients, doctors may use a form of immunotherapy instilled in the bladder called B.C.G. which stands for Bacillus Calmette-Guerin. B.C.G. is used to inhibit the cancer’s growth and prevent recurrence.  

If patients do not respond or recur after B.C.G., a radical cystectomy – a surgical procedure to remove the bladder, is offered.  In select patients, pembrolizumab, a form of immunotherapy, can be used as an alternative. 

For localized bladder cancer invading the muscle, treatment is typically chemotherapy, followed by surgery. Tri-modality treatment using chemotherapy along with radiation is an option for patients who are not candidates for surgery – or refuse surgery – and who meet criteria for bladder preservation.   

Surgery, including a urostomy where the bladder is removed and replaced with a stoma outside of their bodies, is a major procedure reserved for patients who are very fit with low comorbidities. 

Now that you understand a little more about your bladder cancer and treatment options, how can you take an active role in your care? 

First, continue to educate yourself about your condition. Ask your doctor for patient resources or visit powerfulpatients.org/bladdercancer for more information.  

Understand the goals of your treatment and ask whether a clinical trial might be right for you.  

You should also consider a second opinion or consult with a specialist following a diagnosis.  

Try to write down your questions before and during your appointments.  And bring a friend or loved one to your appointments to help you recall information and to keep track of important details.  

Finally, remember that you have a voice in your care. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate. 

To learn more about bladder cancer and to access tools for self-advocacy, visit powerfulpatients.org/bladdercancer.  

Why Should Bladder Cancer Patients See a Specialist?

Why Should Bladder Cancer Patients See a Specialist?  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari from Fox Chase Cancer Center reviews the benefits of seeing a specialist for a consultation following a bladder cancer diagnosis.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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Be Empowered in Your Care

Be Empowered in Your Care

Who Should Be on Your Bladder Cancer Care Team_

Who Should Be on Your Bladder Cancer Team?

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

The Importance of Self-Advocacy in Bladder Cancer Treatment


Transcript:

Katherine Banwell:

Why should patients consider seeing a bladder cancer specialist? And how can they find a specialist?   

Dr. Anari:

So, I think, always, you can speak with your primary care doctor or your local urologist. They’ll know the bladder cancer specialist in the area. I think it’s important to see a bladder cancer specialist, because the field of oncology is always changing. So, you want to be treated by someone who really is the most up to date on treating bladder cancer. 

Bladder cancer specialists may also have access to cutting-edge clinical trials, which you may be interested in. So, it’s nice to know what both the standard options are but also the clinical trial options to see what the best fit is for you.  

Katherine Banwell:

What advice do you have for patients that may feel like they are hurting their doctor’s feelings by seeking a second opinion?  

Dr. Anari:

So, if my patient is interested in getting a second opinion, I always encourage it. And I actually give them recommendations on people to see. I think very few providers will feel offended or upset by one of their patients requesting a second opinion. At the end of the day, each person’s cancer journey is different. And each person needs to feel comfortable with their own treatment plan. 

And by getting a second opinion, they may have treatment options available to them that weren’t otherwise available. So, it’s always nice to know what’s out there.  

Is It Too Late for a Myeloma Second Opinion?

Is It Too Late for a Myeloma Second Opinion? from Patient Empowerment Network on Vimeo.

When is the best time to seek a second opinion? Dr. Joshua Richter discusses the benefit of seeking a consult with a myeloma specialist to optimize your care.

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 Thrive Myeloma


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How to Thrive and Set Myeloma Treatment Goals

How to Thrive and Set Myeloma Treatment Goals

Defining the Myeloma Patient Role in Their Care

Defining the Myeloma Patient Role in Their Care

What Are Relapsed and Refractory Myeloma?

What Are Relapsed and Refractory Myeloma?


Transcript:

Katherine:

Randall writes, “I was diagnosed last year with myeloma, and my first treatment worked, but now I’ve relapsed. Is it too late to consider a second opinion or a consult with a specialist? Would that change anything?   

Dr. Richter:

It’s a phenomenal question. There have actually been studies to show that if you engage with a myeloma center at least once within your myeloma journey, you do better than someone who has never done that. So, it is never a bad time to seek out a specialist. And one of the good things that came out of COVID is telemedicine. So, if there’s not someone right in your area, reaching out to some of our advocacy groups to help connect you to physicians like me or any of my colleagues, we’re more than happy to see anyone, I’ll see you with an MGUS that’ll never bother you, as will all of my colleagues and people who work in myeloma.   

If you’ve had one prior line, 15 prior lines, anywhere in between. So, I think it’s always a good idea to see a specialist because he or she is more than happy to work with your local doctor to optimize your treatment without having to necessarily go to another center.

The Role of a Myeloma Specialist on Your Care Team

The Role of a Myeloma Specialist on Your Care Team from Patient Empowerment Network on Vimeo.

Why should you seek a consultation with a myeloma expert? Dr. Krina Patel discusses the important roles a specialist can play in your myeloma care, even from a distance.

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

Related Resources:

Expert Advice for Newly Diagnosed Myeloma Patients

Relapsed and Refractory Myeloma Defined

Myeloma Induction and Consolidation Therapy Defined

Transcript:

Katherine:  

You mentioned the healthcare team. Dr. Patel. How does a myeloma specialist fit into that care team?

Dr. Patel:

So, I will say, as a myeloma specialist, I probably have three different ways that I am involved in different patient’s care. So, I have patients who are from Houston, where I’m at, that come to MD Anderson for their treatment. So, I see them on a regular basis if they’re on treatment, or I’m following them to make sure their disease is stable, what’s going on. So, I see them regularly, and I’m their main doctor for their cancer. And then, I have patients who are maybe a little bit farther away, and I see them as part of the team.

So, they have their own oncologist in their community that they’re seeing and they come see me either virtually or in person every few months, or if something’s happening; if their myeloma’s returning or they’re having toxicity, then they reach out to me so I can talk about different ways we can change therapy. And then, the third really is for second opinions where patients don’t necessarily  want to come see me all the time but they might want to be on a clinical trial that we might have at MD Anderson. So, they come just for that trial and then they go back to their doctors again. So, we sort of do whatever works best for the patient.

Five Tips to Participate in MPN Care and Treatment Decisions

How can myeloprolferative neoplasm (MPN) patients become more active in their care? In the “How Should You Participate in MPN Care and Treatment Decisions?” program, expert Dr. Abdulraheem Yacoub of the University of Kansas Cancer Center shares five key tips MPN patients can take for a more active role for optimal health outcomes.

1. Become a Patient Self-Advocate

It’s vital to have the ability to advocate on your own behalf no matter your age at diagnosis. And some MPN patients will be diagnosed at a relatively young age and will have different MPN care providers over the course of their disease. These patients need to get accustomed with the idea of care approaches changing over time.

2. Get Involved and Build Your Village

Being involved in your well-being as a patient is of utmost importance, and thinking about your support network is recommended as one of your early steps as a patient. Think about who among your friends, family, co-workers, and spiritual community might be able to help support you – and ask your MPN care provider about support resources if you need some additional help.

3. Bring a Friend or Loved One to Appointments

It’s important to have someone else at your appointments with you to help understand the information you receive and to also take notes and to ask questions if it’s helpful for you. Having a second set of ears is especially important with your early visits about treatment options, and the use of telemedicine makes it easier for loved ones to help support your appointments.

4. Get a Second Opinion

Second opinions are no longer the taboo that they were once perceived as. Listen to medical facts given to you from your MPN specialist and from your primary treating physician. And if you want a second opinion from another MPN specialist, this practice is easier to carry out now through telemedicine.

5. Seek Out Credible Resources and Research News

Keep yourself informed about the latest MPN research and treatment news by visiting credible online resources. In addition to PEN, check The Leukemia & Lymphoma Society (LLS) and MPN Research Foundation. The annual meetings of expert conferences like the American Society of Hematology (ASH) and American Society of Clinical Oncology (ASCO) bring research updates for MPN online resources to cover.

By taking a more active role in their care, MPN patients can help determine the best care and treatment plan for optimal health outcomes.

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment from Patient Empowerment Network on Vimeo.

Bladder cancer expert Dr. Shilpa Gupta encourages patients to advocate for themselves and to become active members in their treatment and care decisions.

Dr. Shilpa Gupta is the Director of the Genitourinary Medical Oncology at Taussig Cancer Institute and Co-Leader of the Genitourinary Oncology Program at Cleveland Clinic. Dr. Gupta’s research interests are novel drug development and understanding biomarkers of response and resistance to therapies in bladder cancer. Learn more about Dr. Gupta, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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Emerging Approaches in Bladder Cancer Treatment

Understanding Common Bladder Cancer Treatment Side Effects

Understanding Common Bladder Cancer Treatment Side Effects

Who Should Be on Your Bladder Cancer Care Team?


Transcript:

Katherine:                  

Right. Let’s talk about patient self-advocacy for a moment. Patients can sometimes feel like they’re bothering their healthcare team with their comments and their questions. Why is it important for patients to speak up when it comes to symptoms and side effects?

Dr. Gupta:                  

Yeah, I think the patients have to be their own advocates, right? Unless they do tell their team about what they are going through, many times action will not be taken unless they’re actually seeing their team in real-time.

And sometimes that visit may not be happening for months so it’s very important to never feel that you’re bothering the teams. And nowadays, with all these electronic ways where patients can communicate with their teams, I think patients are very aware that they can send a MyChart message, for example, and someone will get back to them within a day. So, I think that is really important and the way they can communicate with their teams has also evolved.

Katherine:                  

How do you think patients can feel confident in speaking up and becoming a partner in their own care?

Dr. Gupta:                  

I think they have to tell their doctors during their visit that they would like to – whatever their expectations are and what they would like their teams to do to fulfill those expectations.

I think that’s the best way I can say this. That they should always speak up no matter what and if they feel that their concerns about treatment are not being heard, then they should let their treatment teams know and ask what alternative treatments there may be. Or, if their life goals have changed, sometimes patients want to get aggressive treatment and sometimes they just don’t want to go through it anymore. They should let their teams know so, adequately; the goals of care can be modified.

Katherine:

Right. If a patient isn’t feeling confident with their treatment plan or their care, should they consider a second opinion or consulting a specialist?  

Dr. Gupta:

Absolutely. I think every patient has a right to consult a second opinion or get second opinions, or even more opinions if they want to make the right decision. Many times, patients are told about one treatment option, and then they want to know, “Well, what alternative options do I have?” “What if I really don’t want my bladder out?” “Is there anything else that can be done?” So, they should be seeing a radiation oncologist in that case.  

I think the way we can really make a difference and offer multidisciplinary care is to have the patient see a surgeon, a radiation oncologist, and a medical oncologist. That’s true multidisciplinary care for anybody with localized disease. For metastatic disease, we have a lot of options and usually medical oncologists are the ones who manage it.   

Patients can always get second opinions if they feel they want to do something less or more aggressive.   

Katherine:

What advice to have for patients who may be nervous about offending their current doctor by getting a second opinion?  

Dr. Gupta:

That’s a great question, Katherine, and I know a lot of patients feel that their doctors may feel offended, but in my experience when – if my patients are not local or they – I actually encourage them to go get second opinions and even make referrals to places which may have trials if we don’t have that. It’s always good to have the patients be able to decide and I don’t think nowadays doctors take offense if patients want to get another opinion. In fact, we try to collaborate with our community oncologists.  

Where, let’s say patients are currently being treated and they come to us to discuss trials or just to discuss if they’re on the right track. We reassure them and reach out to the community doctors that – yes, we totally agree with what the patient is doing, and these are some other options down the line. And, with the advent of virtual health it’s really become a lot more collaborative because patients are still getting treated locally. When the have their scans and have questions they can schedule a virtual appointment with their doctors in institutions where we have more treatment options like trials.  

Katherine:

Dr. Gupta, if patients want to learn more about bladder cancer, or if their families want to learn more what are some credible resources that you would send people to?  

Dr. Gupta:

Yeah, I think it’s always good to get credible information than just Googling things which may or may not be true. Bcan.org is a very powerful resource that is a Bladder Cancer Advocacy Network, and as the name implies it’s for the patients, made by bladder cancer advocates.   

That’s one of the resources that we highly recommend. Then there’s the resource that you all are working on. So, I think these collectively are the best sources of information which patients should try to stick to.   

Katherine:

Right. That’s good advice. To close, what would you like to leave our audience with? What are you hopeful about?  

Dr. Gupta:

I think I would like to say that there’s a lot of good information, there’s a lot of advocacy resources. Patients should try to get their information from these verified sources and bring it to their care teams. And never hesitate to reach out for whatever they need during their diagnosis and treatment phase. Always ask questions. Ask about clinical trials. Ask about alternative options. That’s what I would leave the message to be.   

Katherine:

Thank you so much for joining us today, Dr. Gupta. We really appreciate it.   

Dr. Gupta:

Thank you, Katherine.   

Expert Advice for Finding an MPN Clinical Trial

Expert Advice for Finding an MPN Clinical Trial from Patient Empowerment Network on Vimeo.

Dr. Andrew Kuykendall, an MPN specialist and researcher, shares tips for learning about available clinical trials. Dr. Kuykendall emphasizes the importance of seeking a consultation with a specialist and suggests questions to ask your provider about clinical trials.

Dr. Andrew Kuykendall is an Assistant Member at Moffitt Cancer Center in the Department of Malignant Hematology. Dr. Kuykendall’s clinical and research efforts focus on myeloproliferative neoplasms (MPNs), MDS/MPN overlap syndromes and systemic mastocytosis (SM). Learn more about Dr. Kuykendall, here.

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Transcript

Katherine:

How can patients find out about clinical trials? Are there specific questions that they should be asking their doctors about to participate in a trial?

Dr. Kuykendall:

Yeah. I think it’s tough. One way – there are a few different tools that I would recommend. One, if you’re very interested in just what trials are going on you can go to this national cancer trials, or NCT, network and try to understand online what trials are available. Clinicaltrials.gov is the actual website but that’ll show you the ongoing clinical trials that are there.

You can type in a disease state, so you can type in polycythemia vera or myelofibrosis or essential thrombocythemia, and it’ll give you a huge list of all the trials that are there. It can be kind of overwhelming because it’ll list all of the trials that have ever been done, but there are different ways that you can stratify those results and look for trials that are just recruiting that are active and that’ll taper down that list. And when you click on those trials there usually is at the bottom a list of participating centers that are there. So, you can see the different centers that are there. Overall, I think that that is a very broad way of doing it and somewhat complicated.

What I would ask is – and one of the things that we always push for is – while most of these myeloproliferative neoplasms can be treated quite easily in the community, meaning that the actual mechanisms of what’s being provided is not something that requires a specialized center. I think the understanding of the disease really does. We always recommend having someone in your corner who’s an expert. They don’t have to be the one who is most involved in your care but having someone in your corner who’s an expert.

That’s the person who’s going to know what trials are going on, what trials may be coming down the pipeline, where those trials may be occurring, and they might also tell you “Okay, here are the things that would prompt you to maybe want a trial.” I had a lot of patients that were surprised to realize there were trials available just because they had – they were getting six or seven phlebotomies a year. They were complaining about that but they figured that was just the ways things were. Lo and behold, there was actually a trial that was ongoing that was trying to reduce the need for those phlebotomies in otherwise low-risk patients.

You can always go to clinicaltrials.gov but also try to ask your doctor about hey is there, if you haven’t seen an expert, is there someone close by an expert that I can see for a second opinion just to understand the disease and ask about trials. Usually everyone’s okay with that and when you do see an expert, say “Hey, first of all what trials are right for me now and what in the future might be reasonable and how am I going to know and how often should I check in to see what things are available?” 

What Key Steps Should Follow a Myeloma Diagnosis?

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

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

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

See More From Engage Myeloma


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Who Is on Your Myeloma Healthcare Team?

What Are the Goals of Myeloma Treatment?

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

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


Transcript:

Katherine:

Donna, would you please introduce yourself for us?

Donna:

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

Katherine:

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

Donna:

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

Katherine:

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

Donna:

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

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

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

Katherine:

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

Donna:

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

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care?

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care? from Patient Empowerment Network on Vimeo.

In acute myeloid leukemia (AML) care, how can telemedicine be used? Watch as expert Dr. Catherine Lai shares different situations where telemedicine has served as a helpful tool and instances when in-person visits are optimal for patient care.

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Transcript:

Sasha Tanori:

My care team suggested a clinical trial for a new drug focusing on improving my lung function, fortunately, my lungs improved on their own. Dr. Lai, not every AML patient is offered a clinical trial as a care option, what advice do you have for AML patients who are seeking clinical trials, and what’s the best way to locate one?

Dr. Catherine Lai:

Yeah, so this is an area, a huge area of unmet need, I would say in general, across all oncology trials, and I think less than 10 percent of the patient population is on trials, there’s a lot of stigmas around clinical trials and are you getting…are you getting a drug that we don’t know what’s going to work, am I being…am I being tested? In oncology, I would say for the most part, we try to make trials where you’re being measured to the standard, so you’re getting the standard plus, or we’re trying not to…just in terms of doing what’s best for the patient, in general, I don’t offer trials to patients where I don’t think that there’s scientifically a rationale for those drugs, but to answer your question, the best place to look is on clinicaltrials.gov. That’s cumbersome. If you don’t know what you’re looking for, I can give you a lot of unnecessary information. There are a lot of other resources out there, The Leukemia & Lymphoma Society is a great resource. I know that they have online or people that you can talk to in terms of helping you direct specific clinical trials, I know depending on where you live in the country, there are other local new chapters, oncology chapters that we have that can help patients find…

And have access to clinical trials, and then I think the biggest thing is just if a patient is with the community oncologist, having enough education to say, can I have a referral to an academic institution where they can ask those questions and get that information, and local community oncologists are fantastic, but they see everything, they see breast cancer, they see one cancer where the academic centers were specialized where all I see is leukemia and MDS kind of acute leukemias. So, it’s just a different set of knowledge.

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit from Patient Empowerment Network on Vimeo.

How can lung cancer patients optimize their telemedicine visits? Watch as lung cancer patient Jill shares her top tips for how to prepare for virtual visits and how to advocate for yourself when communicating for optimal care.

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Transcript:

Jill:

One thing that someone else recently mentioned to me is to be patient with the doctor who might be late, and I don’t mind actually, the doctor’s late or early. I’ve had a doctor be up to half an hour early or up to an hour late, and that doesn’t bother me, I just go on living life and doing other things while I wait for the call, but I do book a bigger chunk of time on my calendar with the expectation that doctors are really busy people and they can’t always predict how long something else will go or what would come up, so it’s good to be understanding about it for sure. 

It’s also helpful for me and a lot of people to write a list of questions, symptoms, and make sure that you get them all answered, so write them down and actually check them off, or cross them off while you’re in the appointment, because you don’t wanna walk away from there thinking, oh shoot, there was that one big question I had and some doctors are okay with getting an email or something between appointments, and some nurses are great to call, but not everyone has that opportunity. 

So, I would say, make the most of your appointment just like you would in-person. Take good care to make sure that you’re advocating for yourself, and if the doctor says words after you ask your cost your question, you don’t feel like you understood them. Don’t be embarrassed or afraid or anything… just ask again, ask for clarification. Sometimes these doctors talk in big words, and my doctor has been great, my oncologist he would like draw pictures and I ask him often to write words down for me if I don’t know how to spell them because why would I know how to spell that? I don’t have a medical and oncology degree, so there’s no shame in asking questions, asking questions is smart, and it helps make us better informed, and it’s true that a better informed and a better-informed patient is a more empowered patient, and we tend to have better outcomes, when we know what’s going on in our treatment, so take the time to ask your questions.

_____________________________________________________________________________

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Stage IV lung cancer survivor and nurse Gina has taken advantage of telemedicine opportunities in her care. Watch as she shares her perspective about the benefits of telemedicine and her hopes for the future. In Gina’s words, “..no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care…”

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Transcript:

Gina:

When it comes to telemedicine, I think that we have to think of it as an adjunct to care, so it wouldn’t replace your actual care with your doctor, and so I think that utilizing telemedicine would really just be kind of like getting a second opinion, getting somebody else to look at your case, and it would have been an opportunity really for you and your community doctor to work with an expert in the field, wherever, whatever disease state you’re being treated it with, and I think that’s one of the silver linings of COVID that we can use, so it wouldn’t necessarily be that telemedicine is taking over your care, but it’s really just an adjunct to your care. So, you would still be touched by your doctor, you still would be assessed by your community doctor, but that community doctor would be leaning on the expertise of the doctor in which you’re getting a second opinion or you’re consulting with…so I think that’s the way that we have to think of telemedicine and diversifying and really making sure that everybody has access to the best care, it’s not really in placement of your normal care, but just an adjunct, so in addition to your care. 

One thing that I really hope that we can benefit from is…I hope that we can really learn from COVID. We learned that really there is a disease that is not defined by borders, and so I hope that we can use the opportunities and the things the way that we were, so I guess we persevered in spite of a disease, I hope we can use that for clinical trials to and so what I mean by that is I feel like the silver lining of COVID was telemedicine, and we were able to provide telemedicine to patients no matter where they were, no matter how they felt, they were able to have the best of the best care right in the comfort of their own home. And so one of the things that I actually personally benefited from was because of COVID, telemedicine was open up everywhere, and so I was able to actually get care from some of the best ALK cancer experts in Boston through telemedicine, and so I wasn’t actually required to travel to Boston instead, I could meet with that doctor by Zoom, and sadly, once the COVID mandates were lifted, that hospital was no longer providing telemedicine, so I was getting this great care, this expert advice in my disease process, and all of a sudden it was stopped, and so I hope that one of the things that we can do is figure out ways to utilize telemedicine to really bring the best care to patients no matter where they are in the United States or really…no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care, and I think it can be delivered through telemedicine.

Clinical Trial Cornerstone Resource Directory

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How Speaking Up Can Positively Impact Your Colon Cancer Care

How Speaking Up Can Positively Impact Your Colon Cancer Care from Patient Empowerment Network on Vimeo.

Why should you advocate for the best care for you? Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, provides key advice to access better care, including the value of second opinions, and why you should feel empowered to speak up.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

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Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?

Dr. Krishnamurthi:

I would advise patients to not worry about that at all. I think that any one of us diagnosed with colorectal cancer would want a second opinion, would want to make sure that we’re getting an opinion from a high-volume cancer. Working here are Cleveland Clinic, I have the luxury of focusing on treatment of gastrointestinal cancers, whereas my colleagues who are in the community are treating patients with all different types of cancers. They have to be knowledgeable in all different types of cancers.

I think that’s actually much harder. I think that if your oncologist is not a specialist, the oncologist may actually appreciate having an opinion from a specialist, which helps them as well.

I think that if the doctor is going to be offended, then that’s probably not the right doctor to see. I think it’s important to just advocate for oneself and go for it.

Katherine Banwell:

That leads to my next question. What advice do you have about self-advocacy, about speaking up for yourself as a patient?

Dr. Krishnamurthi:

I think that’s very important to feel comfortable with your treatment team, with the doctor, nurse, nurse practitioner. If you have the luxury where you have choices where you live, seek out somebody who you can really connect with. I think it’s very important for the treating team to know what the patient is going through.

We have to know how the treatment is going so that we’re dosing properly, making adjustments. We want to know what our patient’s goals are so that we’re providing the best quality care.

I think it’s helpful to bring somebody to appointments. Or if you can’t bring somebody, you’ll call them on the phone. We’re doing that a lot now. People are joining by video call or even speaker phone. Many offices will have a speakerphone. You can ask to have somebody called on your behalf. Especially with COVID and the restricted visitation. Let’s get people on the phone. Somebody else to listen for you. For the patient, I mean, and to take notes. That really helps