Myeloproliferative Neoplasm Symptoms: Saying Fine Is NOT Enough | FINE
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Hear from real people living with or affected by MPNs, and see why they decided that fine was not enough for their MPN journeys.

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(Asha) I do tell people I'm fine all the time, even though I'm really not….

 

(onscreen text) THERE ARE 2 SIDES TO EVERY MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…

 

(onscreen text) FEARFUL OF BEING A BURDEN

 

INSIDE I WAS STRUGGLING

 

NERVOUS TO SPEAK UP

 

EASIER TO STAY SILENT

 

(onscreen text) ASHA Diagnosed With Polycythemia Vera (PV) in 2012

 

(Asha) “When I was diagnosed…I didn't really deal with it…I would ignore my doctor's appointments. I would just kind of like, “Oh, I'm okay…like I'm fine.”

 

…I didn't want to say anything to anyone…. I just wanted to understand first what it was before I told other people…I didn't want people to, you know, make fun of me or, or see me in any different way than they already have seen me prior….

 

(onscreen text) MICHAEL Asha’s Father

 

(Michael) …society can be cruel. And I think my daughter knows that, so she doesn't want to release too much of a weakness, kind of thing, you know?

 

(Asha) I'm not very trusting…I open up in doses about what I have….

 

(Michael) She does a good job of hiding that, how she feels …I can tell you this, she's not as forthcoming in sharing her condition….

 

(Asha) …it has to do with the burdening thing. You don't really want to burden anyone like with a heavy conversation.

 

I don't think that my family and friends know to the extent of what I go through because I try to conceal it.

 

…A lot of the times I may be walking down the street and I may look fine, but I may have like an enlarged spleen or I may have like something that's really painful inside of me…I’m dealing with something…So I think that's the hardest part is balancing that, oh, I look okay…but sometimes I'm not okay.

 

…the most recent symptom is night sweats… coupled with weight loss…. Those symptoms were really alarming to me because I’d never experienced it before and I knew that it was a part of PV.

 

(Michael) …I would say, well…“So how's my daughter doing?” “I'm fine. I'm fine, dad.” And that tone of her voice lets me know if she's fine or not….

 

(onscreen text) FINE IS NOT ENOUGH

 

(Asha) There's a lot of downsides to keeping things to yourself because, if you're not able to express and talk about what's bothering you, then it's hard for people to help.

 

(Michael) …We've come to a point now where, if she's not fine, she will tell me…she's a lot more forthcoming now with details….

 

(Asha) …that's one of the things that I've learned is that I have to be more vocal… and it won't come off as weakness…if anything, it will make me stronger

 

(onscreen text) SHARING THE IMPACT OF YOUR MPN MAY HELP YOU GET THE SUPPORT YOU NEED.

 

…I would tell my doctors and nurses, you know, I'm, I'm okay. You know, I'm fine. And then I would have symptoms later on…I've learned that, especially with your physicians, that's a big no-no, because they're the main people that can help.

 

…making sure that you're fully, or as transparent as you possibly can be with your physicians is key…they're the ones that are going to be there with you every step of the way with this diagnosis.

 

…they just really want to understand what's going on with me so they can, you know, best solve it in the way that they can...

 

…so for that reason, I don't, I don't really hold anything back …I just want to feel better anyway, so I'm just willing to tell it all.

 

(onscreen text) SPEAK UP AND SPELL OUT HOW YOUR MPN AFFECTS YOU.

 

…living with an MPN and sharing your experience is extremely important…

 

…I’ve had a lot of highs and lows dealing with this. I’ve had a lot of crying nights. I’ve had a lot questioning, “why me?”…so to come to this space…I feel encouraged to spread the awareness.…

 

…This is a long game…so…never tell them you're fine when you're not really fine. And you’ll be light years ahead of me when I first got diagnosed.

 

(onscreen text) FINE IS NOT ENOUGH

 

(onscreen text) UNDERSTAND WHY FINE IS NOT ENOUGH FOR YOUR MPN JOURNEY.

 

(onscreen text) Learn more at FineIsNotEnough.com

 

(onscreen text) This video is sponsored by Incyte Corporation.

 

(onscreen text) © 2021, Incyte Corporation. MAT-HEM-02326 09/21

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(Louise) When I first was diagnosed, I…was like, everybody else just scared to death and not wanting to say anything...But…I have learned that they're never going to know unless I tell them what's going on.

(onscreen text) THERE ARE 2 SIDES TO EVERY MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…

(onscreen text) FATIGUED

ITCHY

NIGHT SWEATS

ENLARGED SPLEEN

(onscreen text) LOUISE Diagnosed With Myelofibrosis (MF) in 2011

(Louise) …I didn't want to tell anybody…because people just didn't understand…
…No, you look fine. You are fine, but you're not really…

…it's hard for people to really understand what it's like going on inside you…

…you know… what's it feel like to sweat from the middle of your head? What's it feel like to itch all the time…

…but when you look the way we do, which is usually pretty okay, it's just hard for them to understand that you're really not okay.

(onscreen text) JOHN Louise’s Partner

(John) …When Louise was first diagnosed…I really didn't know what it was…

(Louise) …finally I said to him, you need to come to some of my seminars…hear the doctors talking… I'm just not faking this, it's for real…

(John) …it's devastating to whoever has it and to their close friends and family…

…just watching her going downhill, it just is the hardest part…

(Louise) …my symptoms have always been…the enlarged spleen…

…my fatigue has gotten a whole lot worse and now I'm starting to…have pain…but the pain is at night, so I can't sleep…

…My partner John takes pretty good care of me. He always figures out how I'm feeling, um, whether I need help to get up or get down…He's there…

(onscreen text) SHARING THE IMPACT OF YOUR MPN MAY HELP YOU GET THE SUPPORT YOU NEED.

(Louise) John listens a lot. He sees my good days…he sees my bad days and that can't always be fine.

…He does have a friend that he shares things with, and I think that helps him to get some of it off of his shoulders…

(onscreen text) IT’S ESPECIALLY IMPORTANT TO SHARE WITH YOUR HEALTHCARE PROFESSIONAL

(Louise) …In the very beginning…I didn't know that I was supposed to tell the doctor. I thought that was their job. Well, guess what? That's not the way it is. It was really difficult for me to be able to open up and say these are the symptoms I’m going through.

…my heart is saying, don't you see it? You know? But no, they don't. You look fine…

(onscreen text) FINE IS NOT ENOUGH

(Louise) …You need to inform them. You need to tell them how you're feeling…

You're the boss, okay?

(onscreen text) TAKE AN ACTIVE ROLE IN YOUR OWN CARE

(Louise) One of the things that…I made sure that I did...is try to educate myself…

…that's what, it's all about. Knowledge…

Myelofibrosis is not like most cancers. It's very different.

…you need to have a specialist…

…get a second opinion, a third opinion, a fourth opinion, whatever you need to do to make you feel comfortable on this journey…

…that leads you to be the driver of your own bus…And don't forget when you're driving your own bus, you have to have your own map to figure out where you're going…

…I now have a great oncologist or…specialist. And… whenever I have a question or a problem, I call them, and I don't wait either…cause I want to know what is going on…

(onscreen text) SPEAK UP AND SPELL OUT HOW YOUR MPN AFFECTS YOU.

(Louise) …hiding your burdens and how you're really feeling can really affect you…

…You need to let people in…

…You need to…get them on your journey.

…what’s it really like to be in your shoes…what are your symptoms? What are you going through…only you can inform them of that.

…some days, I just have to say, I'm not feeling so good today…

…You can’t always just be saying you’re fine…People just want to always think everything's rosy dozy…You have to let them know how you’re really feeling. Cause nobody’s going to know unless you share it with them.

(onscreen text) Learn more at FineIsNotEnough.com

(onscreen text) This video is sponsored by Incyte Corporation.

(onscreen text) © 2021, Incyte Corporation. MAT-HEM-02417  09/21

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(Christine) I work in healthcare, and I have patients that come in and have a hard time opening up…. And then, on the flip side…I have the same problem….

(onscreen text) THERE ARE 2 SIDES TO CHRISTINE’S MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…

(onscreen text) FELT UNCOMFORTABLE SHARING MY SYMPTOMS

I DIDN’T KNOW WHAT QUESTIONS TO ASK

NEEDED TO FIND THE RIGHT HEALTHCARE PROFESSIONAL

EVERYTHING CHANGED WITH A SECOND OPINION

(onscreen text) CHRISTINE Diagnosed With Polycythemia Vera (PV) in 2015

(Christine) It's hard for a lot of people to open up to their physician at times...I find it hard. It's easy to say that you're just fine versus having a list of complaints….

When I was first diagnosed with PV, I really didn't know much about MPNs…so I was really reluctant to ask questions. I’d listen to what they had to say to me.

When I talk about…my symptoms, I feel like I'm whining…or I’m a burden to people.

When someone asks you how you're doing, you just say, "I'm fine. I'm good." …Sometimes it's easier just not to tell anybody what's going on….

(onscreen text) IT’S IMPORTANT TO SPEAK UP AND SPELL OUT THE IMPACT OF YOUR MPN SYMPTOMS

(Christine) I was having a lot of headaches. I was very fatigued. And I was starting to have pain in my feet, pain in my hands, and I really didn't tell my hematologist right away. I didn’t feel like I could share…and I just…I just held back.

…I didn't know these symptoms I was having…were from my MPN.

It's important to feel comfortable with your physician, and so you can open up and tell them, you know, the symptoms that you're feeling.

…We need to let our physicians know that we're not just fine…

(onscreen text) DETAILED SYMPTOM COMMUNICATION MAY HELP IDENTIFY EARLY SIGNS OF DISEASE PROGRESSION

(Christine) It is so risky when you do not open up to your physician. There might be subtle changes that you’re feeling, um, they’re not seeing in the blood work…but it could be an indication that things are changing with your disease…. I think it’s important to give all your symptoms.

…Instead of saying “just fine,” sometimes I find it’s easier to write things down…knowing there’s times where…maybe you just don’t feel like opening up…. It’s easy to pass a paper with some questions on it….

No question's a silly question. You need to ask whatever you want to ask. It's important.

(onscreen text) UNDERSTANDING HOW YOUR MPN IS AFFECTING YOU CAN LEAD TO MORE INFORMED CONVERSATIONS ABOUT YOUR CARE

(Christine) It's so important to try to gain more knowledge of your disease…. It'll help you feel more confident….

I now know what to look for with symptoms, what to ask my physicians.

(onscreen text) SEEKING OUT THE SPECIFIC SUPPORT YOU NEED CAN HELP EMPOWER THE JOURNEY AHEAD

(Christine) …After being diagnosed, I…had a second opinion. It was with a true MPN specialist.

They're the people that see these diseases every day…they're up on all the research….

I’m more of a partner with the hematologists I have today.

…And I can open up, and that is so important. It is empowering….

(onscreen text) BECAUSE FINE IS NOT ENOUGH FOR YOUR MPN JOURNEY

(Christine) You need to tell any physician that you see…how you're feeling. Don’t be “just fine.”

Let ‘em know what's going on in your life. Open up.

(onscreen text) Download communication tools to help empower your MPN healthcare conversations at <<Fineisnotenough.com>>

(onscreen text) This video is sponsored by Incyte Corporation.

(onscreen text) © 2022, Incyte Corporation. MAT-HEM-02774  04/22

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(Mickey) …being an old ex‐college football player…you do not admit that you're tired. You don't admit that you've got some issues going on when it comes to your body strength…even your mental strength…

…I may look fine, but I got a whole lot of stuff going on inside me.

(onscreen text) THERE ARE 2 SIDES TO MICKEY’S MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…

(onscreen text) FATIGUED EVERY DAY

IKEPT IT TO MYSELF

NOT EASY TO ADMIT WEAKNESS

EASIER TO DOWNPLAY MY SYMPTOMS

(onscreen text) Mickey Diagnosed with polycythemia vera (PV) in 2018

(Mickey) People know that I have a rare blood cancer called PV. What they don't know is what's going on inside me.

Over…the first year or so…I…had…bleeding gums, extreme fatigue…enlargement of my spleen…… those times of brain fog and not being able to sort some things out…

…I really downplayed the fatigue…

…I’m a high-energy guy

…when someone would ask me how I'm doing, I'm fine…when really I might have wanted to say, if you got 20 minutes…I can tell you that I'm aggravated, I'm angry and that I'm not really feeling all that well…

I had to learn to be able to tell people that…I'm not fine.

(onscreen text) FINE IS NOT ENOUGH

(Mickey) Right from the very beginning…of course I told Nancy about it. She was very, very supportive.

(onscreen text) Nancy Mickey’s wife

(Nancy) …I can see a lot of times how he feels and sometimes he doesn't even have to tell me.

(Mickey) …I don't know where I'd be without her…I'm sure there were days that I was not Mr. Positive…

(Nancy) …He has to work very hard to keep the great attitude that he always has…

(Mickey) …you gotta be mentally tough to tackle this disease.

(onscreen text) SHARING THE IMPACT OF YOUR MPN MAY HELP YOU GET THE SUPPORT YOU NEED

(Mickey) …one of my greatest challenges…I think with anyone who has an MPN… is that we're probably not totally honest in the beginning with ourselves and certainly not with our friends and our loved ones.

(onscreen text) IT’S ESPECIALLY IMPORTANT TO SHARE WITH YOUR HEALTHCARE PROFESSIONAL

(Mickey) … I, really wasn't letting my oncologist know all of my symptoms…

…saying I'm fine is easy to say, it's harder to say, I'm not doing so good…

(onscreen text) ENCOURAGE COMMUNICATION ACROSS YOUR HEALTHCARE TEAM

(Mickey) …Being honest with…my oncologist and my healthcare team has made my life better…

…my oncologist copies my internist on every visit. So if you want the full effect of your entire medical team, the best way to do that is again, communicate, communicate, communicate.

(onscreen text) SPEAK UP—AND SPELL OUT-- HOW YOUR MPN AFFECTS YOU

(Mickey) …if you don't say it, they will not know it… and you have to make sure that…they understand what you mean.

This disease…has its downfalls, but the downfalls are not going to defeat me. They're not going to define me.

(onscreen text) FINE IS NOT ENOUGH

(onscreen text) UNDERSTAND WHY FINE IS NOT ENOUGH FOR YOUR MPN JOURNEY.

(onscreen text) Learn more at FineIsNotEnough.com

(onscreen text) This video is sponsored by Incyte Corporation.

(onscreen text) © 2021, Incyte Corporation. MAT-HEM-02502 11/21

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Redefine Your
MPN Communication

MPNs are progressive diseases, which means they can change or get worse with time. That’s why it’s important to recognize how your MPN impacts your quality of life—and to respond by speaking up and seeking out the care and support you need from family, friends, and especially your MPN healthcare team.

Remember, changes in your MPN symptoms could be a sign that your MPN is changing, too. So be sure to spell out how you really feel. Because fine is not enough.

Take an active role in your MPN journey. The FINE Healthcare Communication Workbook provides practical, interactive worksheets you can use to have more informed conversations during your MPN healthcare appointments, including:

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FINE Healthcare Communication Workbook

Take an active role in your MPN journey. The FINE Healthcare Communication Workbook provides practical, interactive worksheets you can use to have more informed conversations during your MPN healthcare appointments, including:

MPN Impact Self-Assessment

Identify the physical and emotional impact of your MPN and share findings with your MPN healthcare team

Healthcare Communication Tip Sheet

Learn how to advocate for your own care with these practical communication tips

Healthcare Appointment Companion

Be prepared to effectively participate in healthcare appointments and to easily capture questions, concerns, and next steps

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Fine Is Not Enough
for Your MPN Journey

Empower your MPN journey by making a commitment to have more informed, meaningful conversations about the ongoing impact of your MPN. Take the pledge today and make the commitment to start speaking up.

I, , pledge to take an active role in my MPN journey by speaking up and seeking the support that I need for my symptoms, my feelings, and my care—because

#FineIsNotEnough.

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