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TEXT ON SCREEN:
Mapping Myelofibrosis
Navigating A Rare Blood Cancer

GSK presents
Mapping Myelofibrosis
Decoding Myelofibrosis

FAITH NORSTER:
"Hello, I'm Faith Norster, Medical Lead for Hematology in the UK at GSK and I'm happy to present this episode of our Mapping Myelofibrosis podcast series. This series features patients, experts and leaders in the myelofibrosis community, sharing conversation, information and perspectives."

TEXT ON SCREEN:
Faith Norster
Host

FAITH NORSTER:
"Today, we are honored to be speaking with Professor Claire Harrison. She is a world-renowned expert and professor of myeloproliferative neoplasms, and clinical director at Guy's and St. Thomas's NHS Foundation Trust, here in London UK."

TEXT ON SCREEN:
Professor Claire Harrison
Clinical Director of Guy’s & St Thomas’ NHS Foundation Trust

Professor Claire Harrison has been compensated by GSK for her participation in this podcast.

FAITH NORSTER:
"Professor Harrison has led major advances in the field, including designing and leading global clinical trials and managing patients diagnosed with myelofibrosis. Professor Harrison, thank you for being with us today to bring your insights to the myelofibrosis community."

PROFESSOR CLAIRE HARRISON:
"Thank you, Faith. It’s a great pleasure to be with you today."

TEXT ON SCREEN:
Decoding myelofibrosis as a complex blood cancer

FAITH NORSTER:
"Receiving any cancer diagnosis and navigating the journey ahead can be overwhelming. With myelofibrosis, there is some added complexity in that myelofibrosis can manifest very differently from one patient to the next, as well as the fact that many people have never heard of myelofibrosis until they, or a loved one, are diagnosed. Some people aren't aware it is a blood cancer and can be told they have a blood disorder. So, it can be confusing to patients as they try to process this diagnosis. Claire, you work on a daily basis to help patients understand and navigate myelofibrosis. What I would like to focus on today, with your clinical expertise, is decoding the complex and scientific language of myelofibrosis for patients, families, advocates, and the broader community. So, to start, why do you think it's important that myelofibrosis should be explained as a blood cancer?"

PROFESSOR CLAIRE HARRISON:
"Faith, actually, I think it's critically important for a number of reasons. First of all, as you've very nicely outlined, many, many people won't have heard of myelofibrosis or much less of myeloproliferative neoplasms or MPNs, which is a family of blood cancers within which myelofibrosis sits. These are rare conditions and oftentimes, you know, patients can look well for a long time, so, they may not ever have seen or known anybody else with this condition."
"So, it's important to use the terminology which is biologically accurate. These are cancers, there is uncontrolled growth of blood cells. It also is a term that is simple to use for friends, family members, employers. It underlines that these are severe conditions, even if the person in front of you who says they are suffering from them looks well, they may not be well."
"So, for all of these reasons, I feel it's really important to use simple terms as well as explaining the complexity of the disease."

FAITH NORSTER:
"Great. I agree with you, it's important to inform patients of this definition as a complex type of blood cancer when they first hear the word myelofibrosis. So, as a clinical expert, can you tell us how you explain what myelofibrosis is specifically?"

PROFESSOR CLAIRE HARRISON:
"Let's start by focusing on the name myelo, which means blood cell and fibrosis, which means scar tissue or fibrous tissue in the bone marrow. Usually, the bone marrow is a soft, spongy environment which over time with this condition becomes scarred. So, myelofibrosis is a condition of the blood, where scar tissue builds up in the bone marrow and that can cause consequences for patients."

"This is caused by a mutation or a change in growth of the cells, which is why this is classed as a cancer."

TEXT ON SCREEN:
Decoding the language of myelofibrosis at diagnosis

FAITH NORSTER:
"So, knowing that myelofibrosis is a complex blood cancer that can have a variety of different manifestations from patient to patient, when you are sharing a diagnosis with the patient, and maybe also their caregiver, how do you explain to them how myelofibrosis may impact their body?"

PROFESSOR CLAIRE HARRISON:
"So, Faith, I think you've raised an important point here. And if there are patients listening who are worried that they've got this condition, it's really useful to take someone with you to a consultation. It could be a caregiver, a friend, or maybe sometimes patients come with somebody else who's been through a similar journey. So, it's very helpful for them."

"And if I'm explaining, the condition and the diagnosis, I would try to use terms that patients can relate to. It's easy for me as a doctor to use terms that I'm very comfortable with that I understand and like would try not to use them. But if I do use them to you as my patient, ask me what I mean."

"So, we would usually start by talking about the fact that the bone marrow is a factory where blood cells are made. And over time, the environment where the blood cells sit, which is usually soft and sponge-like, becomes scarred or fibrotic and then blood cell production is not so good. So, then there can be problems with too few blood cells, which can lead to issues for patients. Also, as the bone marrow becomes more scarred, the spleen starts to take over production of blood cells. And it does this because when we were first developing as an embryo, the spleen is actually the place where the first blood cells are made, and it retains that ability. So, it becomes enlarged in patients with myelofibrosis. So, I explain that to them. I explain that the spleen is usually a fist-size organ and it can enlarge, and sometimes enlarge a lot."

"As the spleen enlarges, it can become almost like being very pregnant for patients as well so, that can cause physical problems, simple things like bending down to do up your shoelace, bending down to play with your grandchildren, to do housework, et cetera."

"And then I also explain that over time, patients may experience symptoms. These can wax and wane and can be quite varied. And these may be quite difficult to manage. Also, oftentimes patients will ask, "What happens when the disease becomes very aggressive?" And then I usually talk about the fact that the bone marrow then doesn't produce cells very well and some patients can develop leukemia, which is a term that many patients have heard of."

FAITH NORSTER:
"So, we hear several complex scientific terms about the manifestations of myelofibrosis that you just mentioned. So, can we decode some of these words in each category you talked about, in terms of what they could mean for patients? So, what can patients experience when they have splenomegaly or enlarged spleen?"

PROFESSOR CLAIRE HARRISON:
"Splenomegaly, or the spleen, something that actually often people haven't heard of at all, which is why usually I describe it as an organ that sits underneath the ribcage that has a function for filtering blood. And, for patients with myelofibrosis, it has a function sometimes in making blood. So, as the spleen enlarges, and patients will become aware of that and that might lead to pain, it sits on top of the stomach so it can cause a symptom called early satiety. Not very intuitive to understand what that means, but it basically means feeling full."

"And also, as it becomes bigger, it will press on other organs in the tummy so it can cause issues with bowel and bladder function, for example."

"So splenomegaly, literally an enlarged spleen."

FAITH NORSTER:
"Brilliant. It's really helpful to understand a bit more about splenomegaly. So, let's move on to some of the terms associated with blood cell counts next. How do you define symptoms like thrombocytopenia, neutropenia and anemia, in easier to understand terms for your patients?"

PROFESSOR CLAIRE HARRISON:
"So, thrombocytopenia, thrombocytes are platelets. These are tiny little fragments of blood cells that are really important in blood clotting. So, these are cells that basically when we have a cut, they stick together and they plug the hole in the blood vessel. So that's their main function. As myelofibrosis progresses, patients often have lower platelet counts. And this may cause no problem at all, but as they become much lower, oftentimes patients may notice that they're bruising more easily. So, thrombocytopenia simply means low platelet count."

"Neutropenia refers to neutrophils, which are one of five different types of white blood cells that are really important, Faith, for fighting off infections. And a low neutrophil count is specifically something that we look at for as clinical staff because it increases the risk of infection. This, I'd have to say, is probably the least frequent low blood count that we encounter for myelofibrosis patients."

"And then finally, our red blood cells. So, if you have too few red blood cells, you have anemia. And red blood cells are the little oxygen carrying packages that zoom around in our blood carrying oxygen from our lungs to our tissues. And if you have too little oxygen, that can make you feel very tired, so fatigue or tiredness is a very common symptom for patients. It can make you feel breathless. It can sometimes give you muscle pain, for example. And patients can describe that to me in different ways. I feel like my legs are cased in concrete. So that can fluctuate widely from day-to-day it can be very impacted for example if a patient was very busy the day before, they will feel very tired. I think we can all relate to that can’t we? And so, anemia, which is probably one of the most common problems that patients come with and becomes more common over time relates to too few red blood cells."

TEXT ON SCREEN:
Decoding the language of myelofibrosis following diagnosis

FAITH NORSTER:
"Claire, thank you so much. Those explanations are really helpful to understand the science of what's happening in the body for someone diagnosed with myelofibrosis. One of the challenges we hear from physicians about their patients, is that these manifestations of myelofibrosis can impact each person differently, each day, and that creates uncertainty on how they can manage their cancer. How do you talk about this with your patients following their diagnosis?"

PROFESSOR CLAIRE HARRISON:
"You're absolutely right, Faith. This is what we would call a very heterogeneous, or variable, condition."

"I usually like to talk about the course of the disease, pointing out that there can be a lot of variability, pointing out, in hopefully a non-scary way that generally this is a progressive disease. It's a disease where there are a lot of different interventions that we will look at from time to time for the patient, depending on the different features."

"So, Faith, let's take these different symptoms and try to understand how they can impact patients. So fatigue particularly impacts how much energy a patient has to expend on things like social life and work. So we generally tell our patients to think about energy in terms of packages and how, and how to manage that."

"Other symptoms, though, can be very impactful as well. So, weight loss can impact body image, can impact physical strength. Itching can be really disabling for patients. So sometime patients who have got really bad itching, medical term pruritus, they may not be able to take a shower at times when this is very difficult and bad."

"Bone pain obviously can impact sort of movement and comfort and also sleep. Sweating at night."

"So, this can be very impactful on a patient. It can impact their ability to work. So they may look well, but they may not be able to work. They may not be able to do all the housework in one day. They may not be able to do their shopping, interact with their grandchildren, for example. And it can be really frustrating and difficult to explain, if the people you're trying to explain it to have never heard of myelofibrosis. But they will have heard of blood cancer. So I would say to a patient, use simple terms, use blood cancer. Provide, if you need to explain to an employer, get your health team involved, direct your employer to some information on the internet as well for example."

TEXT ON SCREEN:
Decoding the management of myelofibrosis together with your health care team

FAITH NORSTER:
"Fantastic. So, now, I'd like to talk more about how your conversations with your patients evolve following diagnosis as you start managing myelofibrosis together. What do your conversations look like during regular appointments with your patients?"

PROFESSOR CLAIRE HARRISON:
"I like the fact that you used the word together. So I think this is all about teamwork. For a patient this is about find the team that works for you. Find someone that you find supportive to you to come with you. Try to plan what you want to ask about in your appointments."

"When I assess a patient, I like to look at these main factors. And usually I'll be looking at the symptoms, the blood test, asking how the patient is. Are there specific things they want to talk to me about? Are there things coming up, a holiday, an operation? A plan about a treatment. And so I'll be assessing all of those things, trying to put them in the context of so you're telling me your fatigued. How is that impacting you? And then I will usually also want to check the size of the spleen."

"Alongside of that, I'm often thinking about, do I need to intervene for my patient? Is their disease changing? How are they responding to treatment? Are we attaining our joint goals together? So it's a very dynamic process."

FAITH NORSTER:
"It's really helpful to hear about what patients can initially expect during their appointments with their physician or their clinical teams you mentioned. Could you explain the different clinical markers you are testing or assessing at an appointment and what are you looking for to assess a patient's current condition to manage those treatment decisions?"

PROFESSOR CLAIRE HARRISON:
"So there are various different markers that I will look at for my patient. There are those specific to the disease, there are how the disease impacts the patient, and then I'm also thinking about, is there a change in the trajectory of the disease for the patient. And actually, I have to say that's often the front of my patients mind when they're coming in."

"So first of all, a patient that comes into our clinic, often waiting a while in the waiting room, we will give them a scoresheet where they can record their symptoms. All my patients have a blood test done so I can measure those blood cells, the red cells, the white cells, the platelets, and also look for immature cells or blasts in the blood because that's an important sign for us. So, those things will all usually be in front of me by the time the patient's come into the room."

"I also like to look at my patients walking along the corridor to see how they're doing. Are they breathless? And when they come into the room, we have a chat, and we talk about anything that's worrying them. I look at the symptoms score, may discuss certain aspects."

"And then, it’s also important for me is to understand some other key factors that are important for prognosis. So, I will be looking to see is there a significant change not only in the blood count, but also in the number of immature cells, helpfully called blasts. These are immature white blood cells that are found in the blood. And then also the size of the spleen. And then putting that all together, how is my patient?"

FAITH NORSTER:
"What we learned from you today, it is abundantly clear that your knowledge as a myeloproliferative neoplasm, or MPN, specialist is critical in partnering with your patients around diagnosis and their treatment journey, emphasizing the importance of connecting with MPN specialists and the full clinical team, like yourself, or patient organizations to access accurate and up to date information."

PROFESSOR CLAIRE HARRISON:
"Thanks, Faith. I couldn't agree more. And I just want to emphasize again on how important it is to have your team. There are networks of clinical teams, nursing teams, pharmacy teams, who work together to provide information, support and care for myeloproliferative neoplasms, MPNs, or myelofibrosis, MF patients So, partnership between patients and healthcare teams is really important."

FAITH NORSTER:
"Thank you so much, Claire, for sharing your informative insights as a clinician and researcher working in the field. I've thoroughly enjoyed our conversation today. I know our audience will value learning more behind the science and terminology of myelofibrosis, that will help them navigate the complexities of this blood cancer."

PROFESSOR CLAIRE HARRISON:
"Thank you, Faith. It was a pleasure to have this conversation to talk about a subject that I and many others are really passionate about, and hopefully we've helped patients to de-codify or understand a little bit more about this disease. But I would encourage patients to find your team, ask if you're not certain, and look for information with a reliable source. Thank you so much."

FAITH NORSTER:
"Brilliant. Thank you so much, Claire. It was a pleasure. Please note that if you need medical advice, consult a healthcare provider."
"On behalf of GSK, thank you to our audience for tuning into this installment of our Mapping myelofibrosis podcast series. We encourage you to stay tuned for new episodes as we continue to shine a light on the most important aspects of life with MPNs, like myelofibrosis. It's these types of conversations and insights we receive from the myelofibrosis community that will help us get ahead together."

TEXT ON SCREEN:
Mapping Myelofibrosis
Explore MappingMF.com for more information.

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PMUS-AOUCOCO250006 June 2025 
Produced in USA.

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