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The National Cancer Institute intensifies quality cancer research and discussion about complementary and alternative medicine. 

The National Cancer Institute's CAM Agenda

A clinical trial manager emphasizes the importance of a phased approach to educating patients about complex protocols and potential side effects.

Empowering Patients With Cancer Through Clear Clinical Trial Communication

Open communication is prioritized in the clinical trial process for patients with cancer, beginning with a general discussion of participation before study-specific details are presented to ensure potential participants are fully informed and empowered, a clinical trial manager said.

This step-by-step approach may prevent patients from feeling overwhelmed by the details behind a clinical trial, Mikaela Dougherty, clinical trial manager at Mount Sinai Ruttenberg Treatment Center in New York, said in an interview with CURE®.

We sat down with Dougherty to learn more about the strategies her team uses to educate patients about complex clinical trial protocols and potential side effects.

So when we first identify a potential clinical trial patient, myself or a clinical research coordinator will go in the room with the physician, the principal investigator, and talk with the patient in more of abstract terms of kind of what it's like to be on the clinical trial, not necessarily the specific of that trial right away. Because when we talk about clinical trials, patients can get very overwhelmed, especially if it's their first one. So we like to take it a step by step.

You know, our first conversation is initially, you know, what we do, what clinical trials are, and then we'll go into how this study specifically might help them. And the physician will go over, you know, the potential side effect profile, our plans of how we could — we'll mitigate those side effects. And then someone like myself would go into more detail about what they could expect while being on study.

And I think it's really important that someone like myself does their due diligence to really ensure that the patient fully understands the commitment of what it's like to be on the study, because it's — it can be overwhelming and it's time intensive. So especially for patients that are still working full time, we want to make sure that they have the resources available to them, you know, either setting them up with social work or patient advocacy groups, where they can help them find the resources that they need to ensure that it's not taking over their life.

You know, I think that's something that our team is really proud of, is that we want the clinical trial to extend your life, enhance your life, but not feel like it's taking over your life, where you can't enjoy the things that you want to enjoy, like going on vacation. So we make our patients aware that, you know, if, if you have stuff planned, we want to make sure we can still accommodate all of those things. So, you know, we're very open and honest with our patients and in hopes that we get that back.

So I think doing all of those, kind of guiding them through what it's like to be on a study, and then also talking to them very honestly about the side effects, and also our mitigation plan and that we want to know everything. I think sometimes patients, they don't want to share with you, the side effects, because of fear of being taken off the trial. But we make it very clear to them that, you know, a lot of the side effects, there's mitigation tools and, you know, ways that we can prevent them, or if they do experience them, make them more tolerable.

So, you know, we all work together and within our research team to ensure that the patient feels comfortable and that their questions are always answered. And also, we tell them that this is an ongoing journey and an ongoing discussion about participation.

For more news on cancer updates, research and education, don’t forget to 

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Effective communication is crucial in the clinical trial process for cancer patients, starting with a general discussion before delving into study-specific details. This approach helps prevent patients from feeling overwhelmed. Mikaela Dougherty, a clinical trial manager, emphasizes the importance of ensuring patients fully understand the commitment involved, including potential side effects and mitigation strategies. The goal is to enhance patients' lives without the trial taking over. Open dialogue and resource support are prioritized to maintain patients' quality of life while participating in trials.

Tumor

Conference

Richard French describes how he knew that his public service announcement (PSA) about myeloproliferative neoplasms (MPNs) was working — and what more work still needs to be done.

After French’s daughter was diagnosed with thrombocythemia, he grew frustrated at the lack of awareness about MPNs. So, he put his television background to good use and worked on a PSA that would air in markets across the nation. And while the PSA led to more money raised for the disease, French mentioned that he still hopes to grow the donor base of people contributing to the cause.

After realizing how little awareness there was about MPNs, one advocate looked to his TV background to help.

A PSA for Myeloproliferative Neoplasms

The treatment landscape for myeloproliferative neoplasms (MPNs) is ever-changing. “It’s hard to keep up, but it’s exciting,” said Dr. Steven Applebaum, a hematologist oncologist at UCLA Health in Pasadena, California.

In an interview with CURE®, Applebaum explained that discoveries in other diseases could pave the way for a better understanding of MPNs, a rare group of blood cancers including polycythemia vera, essential thrombocythemia and myelofibrosis.

“Knowledge is somewhat exponential,” he said. “You make one discovery, which seems big, and then that kind of leads to not one more, but five more.”

Of note, Applebaum said that researchers and clinicians continue to learn more about genetic mutations and targeted therapies that will help personalize MPN therapies and make them more effective — helping patients with the disease to live longer and with a better quality of life.

Ongoing Research May Lead to ‘Exciting’ Advancements for Myelofibrosis Years Down the Line

Looking at a lot of other diseases, I mean, knowledge is somewhat exponential. You make one discovery, which seems big, and then that kind of leads to not one more, but five more. The guys doing research in the lab, I expect us to learn a lot more different mutations, you know, targeted therapy. So I think we're all really excited just looking at a lot of other diseases as a model, that there's going to be increasing numbers of treatments that again, are going to help people live longer, but also improve their quality of life.

So the thing about being an oncologist is that (when) you've finished your training, you realize you don't know anything; everything's in evolution. So, the things I knew back then are really so cursory relative what we know now, so it's part of what motivates us to keep going as you know that the changes in the discoveries and new treatments are going to be coming almost daily. I mean, it's hard to keep up but it’s exciting.

One scientific development can lead to many more for patients with myeloproliferative neoplasms, a type of rare blood cancer, according to an expert. 

‘Knowledge Is Exponential’ in the Rare Blood Cancer Space

While in nursing school, a patient recognized potential signs of a blood disorder and advocated for further testing, leading to an early diagnosis of essential thrombocythemia. 

A Patient's Self-Advocacy Leads to an Essential Thrombocythemia Diagnosis in Her 30s

Despite initial dismissal of her concerns, a patient's persistent advocacy for her own health led to a diagnosis of essential thrombocythemia in her 30s.

Essential thrombocythemia is a type of myeloproliferative neoplasm (MPN) during which there is an overproduction of platelets.

Joy Ann Anderson is a patient with essential thrombocythemia for the past 24 years. She has provided one-on-one support over the last three years as an 

CURE spoke with Anderson to talk about her initial diagnosis of essential thrombocythemia and the symptoms she experienced.

Yes, I had symptoms. I had severe headaches, and I was super fatigued. And I was only in my 30s, and I was, you know, trying to work full time and support my family. And I had kids, and it was really hard.

My PCP [primary care physician] said, “There's no way that you have this.” I was in nursing school, and I said, “I think I have essential thrombocythemia. My platelets have been super high. Here's my lab work.” And my PCP just really — I really had the push to see a hematologist oncologist.

So I finally got the order to see a hematologist oncologist, and he did a bone marrow biopsy right then and there, right in the office. And he said, “OK, we'll see, you know, if this is true.”

And six weeks later, I came back, and he said, “You were right. You have essential thrombocythemia. It's very rare for your age, but it, you know — you can just take a baby chemo pill, hydroxyurea, and come see me every six months, and, you know, normal … bloodwork and you'll be fine.”

When it comes to rare diseases such as myeloproliferative neoplasms (MPNs), gaining an understanding of the disease and seeking a specialist for treatment can help patients feel more at ease with their diagnosis, explained Dr. Raajit Rampal, an associate attending physician at Memorial Sloan Kettering Cancer Center in New York City.

MPN Survivor Urges Clinicians, ‘Break (Info) Down to Me Where I Can Understand It’

MPNs are a group of rare blood cancers that many people have not heard of at the time of their diagnosis, according to Rampal. However, learning more about the disease and its treatment can help ease patients’ minds, as “uncertainty creates anxiety,” according to Rampal.

When it comes to developing new treatments and sparking new scientific discoveries in the MPN space, specialized doctors and researchers are essential, Rampal said.

“Sometimes (a patient will say), ‘You know, this disease is a one-in-a-million diagnosis.’ And I’ll say, ‘Yes, but you are the 10th or 11th person who I’m going to see today with it.’ That helps to further this type of research,” Rampal said in an interview with CURE.

Well, (there are) a couple of things, a couple of challenges.

No. 1 is education. You know, when patients get diagnosed … this is a rare disease, as I often say to the patients, “This is not something your neighbor has, you're not going to have a chat with them about that in all likelihood.” And oftentimes, what is lacking when we meet somebody who's newly diagnosed is them having an education about this disease, they, in most cases, have never heard of this. And the doctors who see them or their primary care doctors, they've read about it, they don't have seen many of these cases.

So part of our job is to educate them thoroughly. This is what you have, this is what it's about, these are the things we can do about it. That's partly just for the sake of education of patients, but partly because, to some extent, it relieves anxiety, right? Uncertainty creates anxiety. I'm a firm believer in that. And so, giving any type of education that will alleviate that or give somebody a better understanding will help with anxiety.

Now, on the other side of things, it's a rare disease, and how do you bring ideas forward? You're dealing with small numbers of patients, right? I think if you have good ideas, they are translatable. But it doesn't stop there. Because you're right, you can have a fantastic scientific idea. How are you going to get patients on to the study? Part of it is building a cohort and having a specialization. Doctors and researchers who are specialized in these diseases, this is most of what they see. Sometimes … (a patient will) say, “Well, you know, this disease is a one in a million diagnosis.” And I'll say “Yes, but you are the 10th or 11th person who I'm going to see today with it.”

That helps to further this type of research. It’s not everyone (who is) going to qualify for every trial. But if you don't have the numbers, you can't do the research. And so making sure that, you know, us, we, as specialists, have a focus in these diseases makes a difference and that allows us to bring concepts forward for clinical trials because then we have the patients who are going to be eligible.

After a patient is diagnosed with a rare disease such as a myeloproliferative neoplasm, learning about their condition and seeking expert clinicians can help put their mind at ease. 

Learn About Rare Cancer Because ‘Uncertainty Creates Anxiety,’ Expert Says

A patient advocate discusses the difficulties of finding and participating in clinical trials for MPNs, and the impact on research and treatment development.

Empowering Patients With MPNs to Participate in Clinical Research

Despite the need for patients with myeloproliferative neoplasms (MPNs) to participate in clinical trials, challenges persist related to the geographically dispersed patient population, compared with other cancer types, among others.

CURE spoke with Robert Greenbaum, of the MPN Research Foundation’s Patient Impact Council, to learn more about the importance of clinical trial participation for patients with MPNs and the challenges that researchers face in the field. In addition to his participation in the council, he is also a patient whose disease progressed from essential thrombocytopenia to acute myeloid leukemia.

Participation in the clinical trials is so important because there's not a lot of MPN patients out there, right? If you think about other cancers, maybe it's breast cancer or lung cancer — I mean, there might be a lot more patients available to participate in the drug trials. With MPNs, you know, we're more of a diverse population. We're spread out.

So, you know, in my situation, I was fortunate to be close to a leading cancer facility. But if you're in a smaller town, you know, more local, you might go to a hospital, health care provider, they don't have access to drug trials. And then the pharmaceutical companies, they're looking like, how do we find these patients? How do we get them involved in the drug trials? But then you have the challenges of, you know, whether [it’s] transportation costs, you know you might not live right near a leading medical facility where the research is being done. So how do you get back and forth to even participate in the trial? So there's a lot of challenges when it comes to the MPNs.

Jeffrey D. White, MD

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