FINE blog post image with three patients

Polycythemia Vera (PV)
Support & Resources

What Tools Can I Use to Take an Active Role in My Well-Being?

When you have a chronic condition like polycythemia vera (PV), it is vital to play an active role in your care. Your Healthcare Professional will monitor your condition and how it affects you and can also help you cope with stress and challenges that may arise.

To make the most of your time with the Healthcare Professional, write down your questions ahead of time and bring them with you. The list below will help you get started.

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What are the goals for my PV?
What are my target blood counts and what are my actual blood counts?
- Hematocrit (red blood cell volume)
- White blood cell count
- Platelet count
- Other
What is my plan to keep my condition under control?

You may also want to ask these additional questions:

How often do you want to see me?
How often will I need to be monitored?
What types of tests or procedures will I need to have?
What do you feel is the best course of action for me?
What information do you want me to keep track of?
What symptoms or problems do you want to know about right away?
What are potential complications of my condition?
What should I do if I start feeling overwhelmed by my PV?

Be sure to work with your Healthcare Professional to set up a wellness plan that is right for you.

Explore more commonly asked questions about PV.

Where Can I Find Support and Resources for Living With PV?

The following is a list of helpful educational resources that you can use to learn more about living with PV.

LIVING WITH POLYCYTHEMIA VERA

DOWNLOAD PDF

POLYCYTHEMIA VERA DISCUSSION GUIDE

Image of the PDF – Is Your PV Under Control

DOWNLOAD PDF

VIEW POLYCYTHEMIA VERA
BACKGROUND INFORMATION

Image of the PDF with background information on PV

DOWNLOAD PDF

How Can I Connect With the PV Community?

For people living with PV, it’s important to know that you're not alone—and that there is a community of support within your reach. Connecting with other people who have been through similar experiences and managed similar challenges can make a meaningful difference on your journey with PV.

Through a variety of programs and resources, the Voices of MPN website links people with PV to disease information, educational programs, and community activities while inviting people to share their stories and spread disease awareness.

Explore community tools and resources

View Patient Videos From the PV Community

VIEW TRANSCRIPT

(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.

“I do tell people I’m fine all the time, even though I’m really not.”
—Asha, diagnosed with PV

VIEW TRANSCRIPT

(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

I KEPT 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.

“I may look fine, but I got a whole lot of stuff going on inside me.”
—Mickey, diagnosed with PV

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