MPN Voices Out Loud
MPN Voices Out Loud
Dr. Krisstina Gowin on Living with MPNs
Listen to MPN expert Dr. Krisstina Gowin, Assistant professor of medicine in the division of Hematology/Oncology at the university of Arizona Cancer Center, and renowned comic book artist J.G. Jones discuss important topics for those living with an MPN, like the value of education and ways to work with your Healthcare Professional to be an advocate for your health. Dr. Gowin, J.G. Jones, and host, Gina, will also discuss the value of an individualized approach for patients with MPNs.
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VOICEOVER 0:00
The information presented in this podcast is intended to be general in nature and is not medical advice. This podcast should not replace or substitute speaking with your Healthcare Professional. Your Healthcare Professional is the best source for medical information. Always consult your care team with any questions or concerns regarding your individual medical condition.
GINA 00:35
Hello, my name is Gina, and welcome to MPN Voices Out Loud—a podcast series brought to you by the Voices of MPN.
MPN Voices Out Loud is part of an education and awareness initiative developed by Incyte Corporation to raise awareness in support of individuals impacted by myeloproliferative neoplasms, or MPNs, which are a group of rare, chronic blood cancers.
We’re joined today by two special guests: Dr. Krisstina Gowin, an MPN expert who is also Assistant professor of medicine in the division of Hematology/Oncology at the University of Arizona Cancer Center—and renowned comic book artist, J.G. Jones who was diagnosed with an MPN over a decade ago. Some of our listeners today may recognize Dr. Gowin and J.G. from a previous MPN Voices Out Loud podcast, which focused primarily on J.G.’s MPN journey from his initial polycythemia vera (or PV) diagnosis to the experience of having his PV transform into myelofibrosis (or MF).
Our podcast audience can read about J.G.’s story and view his illustrations by visiting VoicesOfMPN.com/rare.
This episode highlights Dr. Gowin’s experience as an MPN expert. She also provides an overview of common MPN symptoms and the importance of finding an MPN specialist.
Dr. Gowin is presenting on behalf of, and is being compensated by Incyte Corporation.
Before we get started, I want to remind our listeners that this podcast reflects the opinions of an MPN expert and is not medical advice. The information shared in this podcast should not replace a conversation with your Healthcare Professional, who is the best source of medical information about your individual diagnosis and management plan.
Now let’s hear from J.G. and Dr. Gowin…
J.G. JONES 02:27
My name is J.G. Jones…I’ve been working in comics for about 25 years and I’m trying to
use those talents right now to tell the stories of other MPN patients.
DR GOWIN 02:39
My name is Krisstina Gowin. I am a assistant professor of medicine at the University of Arizona Cancer Center with special interest in myeloproliferative neoplasms as well as integrative oncology
GINA 02:53
Since MPNs are considered to be “rare diseases,” it’s possible that we have a few listeners today who are new to the MPN landscape. Since Dr. Gowin is actually a specialist in this field, she’s going to give us a brief overview of what MPNs are and talk to us a little bit about some of the challenges faced by this patient population.
DR GOWIN 03:12
We should perhaps start at the beginning, the definition of what a myeloproliferative neoplasm really is and of course, short is MPN
DR GOWIN 03:22
…MPNs are a group of rare, chronic blood cancers including polycythemia vera or PV, essential thrombocythemia or ET and myelofibrosis or MF.
DR GOWIN 03:35
MPNs are characterized by too many or too few blood cells, red blood cells, white blood cells, platelets, an enlargement of the spleen and really importantly a diffused constellation of symptoms. This concept of symptom burden in myeloproliferative neoplasms has become really apparent and in the literature these days that the symptom burden are just as important as the blood counts that are associated with the disease.
J.G. JONES 04:07
Do MPNs progress in the same way for everyone?
DR GOWIN 04:11
…Everyone has their own path with MPN…But it
is important to know the symptoms of progression, both the symptoms and the changes in
blood counts so that both patients and caregivers can really be part of the healthcare team
and identifying progression as it occurs.
J.G. JONES 04:31
…what are some of the common symptoms in MPNs?
DR GOWIN 04:35
So MPN symptoms can truly vary widely…and some people will have severe MPN symptoms while others may have no symptoms at all so it’s important if you or someone you care about is experiencing new or worsening symptoms…to talk with your Healthcare Professional and that’s because, as we’ve mentioned, MPNs are progressive conditions, which means that they can change or even worsen over time and this is why keeping track of things like changes in your symptoms can play such a vital role in advocating for your own health[EM1] . [EM1]
DR GOWIN 05:07
…I think one of the challenges in MPN diagnosis is the symptoms are pretty ubiquitous…some of the symptoms include fatigue, headaches, dizziness…but lots of other symptoms are present…like pruritis or itchiness of the skin, particularly with warm showers, which I know you’ve expressed difficulty with concentration, flushing of the skin, bone pain, swelling of the abdomen, early satiety or feeling full quickly, all of these things can potentially be symptoms of MPN…
J.G. JONES 05:42
…A lot of the symptoms can look like something else…so it’s really important to pay attention to how many different symptoms you have and keep track of them…and I think that helps a lot towards getting a proper diagnosis.
DR GOWIN 05:56
…And also, not being afraid to talk about some of the harder symptoms…with your Healthcare
Practitioner, like depression, even sexual dysfunction J.G. JONES: Sure and so, I think we like to kind of, you know, raise the importance of going ahead and talking about those important topics with your hematologist.
GINA 06:15
Remember, it's important to pay close attention to your symptoms...be sure to talk with your Healthcare Professional about any new or changing symptoms you experience.
J.G. JONES 06:25 [NM2]
…Can we talk a little about why you think it’s important that people know about MPNs and educate themselves about MPNs?
DR GOWIN 06:33
…Absolutely, so MPNs are truly a rare disorder…and so I think it’s…because it’s so rare…it’s not a common disorder that primary care physicians see or even the hematologist perhaps is seeing on a routine basis and so by raising awareness, I think it brings it to the forefront when a say a complete blood count comes back and there’s elevated platelets or a high hemoglobin, you know… oh maybe I should be thinking about this rare chronic blood cancer[EM3] , MPNs…just a reminder that these rare disorders are out there.
J.G. JONES 07:10
…Talking to some other people that share these diseases, I find that a lot of them tell me
getting a diagnosis was one of the hardest parts because not every general practitioner is all
that familiar with this suite of diseases and the more you know the better off you are and the
faster you can get a diagnosis.
DR GOWIN 07:33
…and I think the other important reason to raise awareness is not just about the diagnosis
…that it’s not just blood counts…and so raising
awareness about the concept of symptom burden and tracking symptoms over time, I think is
essential.
J.G. JONES 07:49
Why do you think it’s important for patients and their caregivers to be their own health advocates?
DR GOWIN 07:55
I think it’s important for patients to understand…what are the things that we’re looking out
for? That, you know, although they may have a phenomenal Healthcare Provider…just to be
sure that if there are changes, you’re also looking out, you know what those changes
potentially could be. You also know your own symptoms better than anyone…
DR GOWIN 08:19
…it’s not about just showing up to your doctor’s office…but it’s also about what are the aspects you can do as a patient to complement your own health and wellness
DR GOWIN 08:29
…You also had talked about education and arming yourself with the knowledge of surrounding the diagnosis. Are there any other tools or techniques that you have had as you’ve progressed through this kind of long journey that you’ve had with MPN that have helped you to feel empowered and in control of the diagnosis?
J.G. JONES 08:52
…I’ve always believed that old mantra, that knowledge is power, and I feel that I always have a better grasp on the disease when I know what’s going on…that allows me to relieve my stress because now I know how to handle things, how to deal with them, what the next steps are. It’s when you don’t know what’s going on, that’s the terrifying time. DR. GOWIN: Right But, when you know what you’re up against and what you have to do, then it’s just a matter of doing it.
DR GOWIN 09:23
So for patients that are newly diagnosed, I think education around the disease is particularly key, setting that foundation, the understanding of the disease itself, the dynamic nature of the disease, how we’re monitoring the disease is critical. And then as patients are kind of progressing through their journey, what I think becomes more critical, or is at least equally critical, is to understand the potential for transformation, how does that look in the laboratory analysis, how does that look in symptom burden, and how can they ensure that they’re helping their physician capture those elements. And then as well as again, focusing on the aspects of their care that they can contribute to – such as their wellness and health behaviors – diet, exercise, smoking cessation, losing weight if they’re obese, having stress reduction strategies, all of that is really more for the kind of the chronic MPN patient, after they’ve already established their diagnosis cause it’s a lot to take in…it’s all about setting the foundation and understanding and then really working on the other aspects as you move along.
GINA 10:47
I’d like to thank Dr. Gowin and J.G. for reminding us how important it is for MPN patients to truly understand their individual conditions, and to get to a point where they can start to recognize if and when things start to change, meaning that they notice if their MPN seems to be progressing, or getting worse. It could even transform into another condition. I think that having that knowledge can really empower someone to speak up on their own behalf. And I think that’s what we’re talking about when we say how important it is to be your own advocate.
As Dr. Gowin pointed out, MPNs are progressive diseases, which means that they’re known to get worse with time or even transform into another, potentially more serious condition. So, to her earlier point, taking an active part in monitoring your symptoms, your blood counts, and even the frequency of certain medical procedures can make a huge difference in enabling someone to have meaningful discussions with their care team.
I also think that the concept of tracking your MPN is something that would have equal value to both a newly diagnosed MPN patient as well as to someone who has been living with their condition for some time. Because as we’ve already said: MPNs can change. For example, even if you’ve had PV for years, it can eventually become more advanced…and it could even transform into myelofibrosis, another type of MPN.
So, when you know what’s “normal” for you, you can more easily identify when something seems different. Having that knowledge really can be empowering. Our podcast audience can actually check out our online MPN tracker tool at VoicesOfMPN.com/tracking.
Dr. Gowin really seems to have a deep and empathetic understanding of this patient population. Let’s find out what inspired her to become an MPN specialist.
DR GOWIN 12:34
…My first passion was really just for oncology patients and that was because during my training, I was an internal medicine resident and it became very apparent that it was with cancer patients that you truly can build these really deep relationships with and a deep level of trust. And you’re not just building relationships with the patient, but also with their entire family and it’s truly a journey that you go on with your patients in cancer care and I fell in love with that journey.
DR GOWIN 13:09
…I think MPNs, it really highlights that journey because of the progressive nature… and of the
MPN diagnosis, you have a lot of opportunity for discussion, a lot of time to talk about ways to
complement their health and wellness, and you really almost become their primary doctor, in
a lot of ways…
DR GOWIN 13:30
…because myeloproliferative neoplasms are truly a rare constellation of cancers, it’s critically
important to be talking to a physician, a hematologist, who is well versed in MPNs and their
diagnosis and their symptom management and tracking of the symptoms…if you are not readily accessible to be seeing an MPN specialist all the time, it’s perfectly fine to have a community physician who I’m sure is phenomenal but be checking in periodically with an MPN specialist because they may have something unique to offer, a unique perspective on the diagnosis and management of the disease.
GINA 14:23
Dr. Gowin just shared some great information.
So we’ve heard the word “MPN specialist” mentioned a few times already, and I've got something for our podcast listeners to think about: how do you know if someone is an MPN specialist? Isn’t every hematologist/oncologist also an MPN specialist?
Well, as many of you know, oncologists are cancer specialists. And hematologists specialize in disorders of the blood—and that can include MPNs. But not every hematologist/oncologist is an MPN specialist.
MPNs are considered rare diseases, so not every Healthcare Professional in the hematology/oncology field has had experience diagnosing and treating them. An MPN specialist has experience with these conditions and understands the unique needs of MPN patients. So what’s the benefit of seeing one? Well, maybe your current doctor has limited experience with MPNs. Or maybe you want another opinion about your diagnosis or care management plan. Or maybe you just want more information about your MPN symptoms from someone who knows what to look for.
As an MPN specialist herself, Dr. Gowin works primarily with MPN patients. I understand that she also takes a very holistic approach to MPN care, focusing on caring for the mind, body, and spirit of the MPN patient. Let’s hear a little bit about her unique approach to MPN care.
DR GOWIN 15:50
Yes, integrative medicine is really the combination of Western, kind of precision
based medicine, the best of that, complemented by the best of all of our complementary
and lifestyle medicine modalities.
J.G. JONES 16:07
Treat the whole patient.
DR GOWIN 16:09
…it empowers the patient because…it’s something they can do and focus on to promote their wellness, so I think that really gives something for patients to do on a daily basis to promote their health and wellness which many of my patients definitely appreciate.
J.G. JONES 16:25
…I like that because I think that it gives the patient a feeling that they have some control over their life…but they are the subject of their own life.
DR GOWIN 16:35
They’re writing their own story.
J.G. JONES 16:37
Exactly, DR GOWIN: Yeah not having it written for them.
J.G. JONES 16:40
So then, why is it so important for patients living with MPN to establish a good relationship with their care team?
DR GOWIN 16:48
Patients really need to feel comfortable to discuss the symptom burden with their caregivers and with their healthcare team and by…not communicating those symptoms, they’re really doing themselves a disservice as far as getting appropriately diagnosed.
J.G. JONES 17:04
Sure, I know that a lot of patients don’t share information because they feel like they’re complaining or exaggerating…but it’s kind of crucial to put everything out on the table, otherwise you could easily miss something.
DR GOWIN 17:18
…you know I definitely have those patients where I know that that’s their personality and so I have to like be digging for every little symptom…
J.G. JONES 17:27
…is there anything else you’d like to say about how you would advise a person to maintain communication with their doctor—as this relationship changes—and things to look out for?
DR GOWIN 17:38
Yeah, communication is so, so key and since we are kind of delving into the topic about integrative medicine I think we should comment on…how important it is to discuss that with your hematologist…
J.G. JONES 17:51
…That’s a great point. You could actually be doing something that could be harming.
DR GOWIN 17:56
Detrimental, exactly. So important to be communicating that.
GINA 18:10
As Dr. Gowin just explained, the concept of integrative care for MPN patients makes a lot of sense. Not only does it offer a holistic approach to wellness, but it also empowers the patient to take an active and vocal role in their own MPN journey. Paying close attention to your body and listening to what it’s saying—and keeping track of that information—well, that’s really useful information. And having that knowledge can help patients speak up for themselves—become their own advocate...and start meaningful conversations with their care team. And it can also help them ensure that their current MPN management approach is the right one for them.
Because things can change over time. Your questions and concerns as a newly diagnosed MPN patient may be very different than someone who has lived with an MPN for years. These are progressive diseases, as Dr. Gowin had said…so it’s important to pay attention to your body over time. To always be tracking. To always be learning. To always be communicating with your Healthcare Professional through ongoing conversations about your condition.
I want to circle back to tracking for a moment and remind our podcast audience whether they use an online tracking tool or a diary or journal that you make notes in—tracking your MPN is a really important way to self-monitor, over time, how your MPN might be changing.
And for anyone who is interested in trying a free online tracker tool that’s specific to your MPN, you can get started by visiting VoicesOfMPN.com/tracking
I’m curious about how J.G., as the patient, approached his MPN journey. Let’s listen to him tell us a little bit about what inspired him to learn about his condition and to become an advocate for himself.
J.G. JONES 19:59
Getting a diagnosis was actually a relief because I had had all of these strange symptoms and I did not understand what was going on. So, once I had a diagnosis, then I had a project to work on and I could approach it just like any of my other projects…my health is another one of my projects, so I make sure I make time for it, budget my time, pay attention to the details, do my research…I do a lot of research when I work on any of my own projects in comics, so I did a lot of research into MPNs and my particular MPN and not just mine but what can it transform into and what are the signs of that so…I not only did a lot of my own research, I asked my doctors where were good places to look for research ‘cause I know that they have other patients and can’t sit there and tell me everything and all of the literature but to get some guideposts about where to go was really helpful.
DR GOWIN 21:01
…you’ve spoken before on keeping a positive mental attitude and that’s really helped you throughout your journey. Is there any other, kind of, thoughts that you want to give along the journey that helped you along?
J.G. JONES 21:14
…so I like to exercise as much as possible. That helps a whole lot just to clear my head out…
eating well, paying attention…You need to not only pay attention to your changes in your
disease but pay attention to your life around you, the people in your life. You’re not just a disease, you’re a person. What are you doing for you?
DR GOWIN 21:38
So you had mentioned your wife as being phenomenally supportive and a wonderful caregiver throughout your process. So, can you speak to the importance of that and why you think it’s so, so critical for an MPN patient to have a caregiver and a support system around them?
J.G. JONES 21:55
…my wife, Dawn, has been there with me the whole way and she knows as much or more about my disease than I do. She keeps amazing notes and goes to all of my check ups with me…she just, really, its somebody I can talk to about what’s going on and someone who understands the changes that are going on.
J.G. JONES 22:20
…I’m kind of an overview guy…I see all the big picture, but she always sees the little picture, the things that I might overlook. She keeps up with everything I miss…and everything that she may miss, I’m on top of. So, I bring her articles to read. And she keeps track of all my blood counts and every appointment we went to so that we can go back in and have a strong grasp of where we are in the disease…
DR GOWIN 22:53
…Absolutely and I think you hit upon something that I find really, really important, is having that caregiver in the exam room with you, escorting you to visits because there’s just so much dialogue back and forth, and particularly if there’s new management strategies. Talking about those management strategies and understanding all of the nuances is a lot to take in as a patient and having another set of ears in the room is just priceless because when you go home, somebody else is a sounding board…
J.G. JONES 23:25
Absolutely. We always have a big debrief over the kitchen table DR GOWIN: Right? when we get home. What happened, what did we learn, what are the next steps?
J.G. JONES 23:35
Dr. Gowin, as a physician – what do you wish you were asked more often by patients with
MPNs?
DR GOWIN 23:41
…what I really wish patients would ask is what can I do to complement my care? What can I do myself to impact my own health and wellness? And I think that really opens the door to really start discussing some of the other things that we can really do…talking about diet…exercise and…what are some of the stress reduction strategies that are personalized for that patient… because I’m an integrative medicine oncologist that I’m biased to that already. [EM4]
J.G. JONES 24:11
…Thank you Dr. Gowin…I think it’s really important to raise awareness so people recognize what’s going on with these rare diseases and that’s pretty much why I decided to get involved with Incyte’s Rare Reflections, MPNs Unmasked program. I wanted to bring to life the stories and journeys of other MPN patients and learn how they’re dealing with it, and their ups and downs, their daily lives and to illustrate that, pretty much to show that you’re not alone, everyone is unique and has a different path, and also it’s just really fun to talk to these people. They’re great.
GINA 25:11
I’d like to thank both J.G. and Dr. Gowin for sharing so much helpful and inspiring information about the MPN journey and the importance of being an informed and empowered patient with an MPN.
Our podcast audience can read more about J.G.’s story and view his illustrations by visiting the Rare Reflections: MPNs Unmasked gallery at VoicesOfMPN.com/rare.
You can also register to receive helpful patient support materials and educational resources specific to each of the three MPNs—PV, MF, and ET—by visiting VoicesOfMPN.com/register
Please check out and subscribe to the MPN Voices Out Loud podcast by visiting MPNVoicesOutLoud.com!
Thanks for joining us today and for allowing us to loudly raise our voices in support of the MPN community.
VOICEOVER
This podcast is brought to you by Incyte Corporation. Voices of MPN is a registered trademark of Incyte. © 2020, Incyte Corporation.