Patient Perspectives: Roy’s Story


Roy’s chronic graft-versus-host disease story

Watch Roy and Kris' journey unfold with chronic graft-versus-host disease (cGVHD) as patient and caregiver. Learn more about Jakafi and how it might be right for you or a loved one.

“Don’t put the symptoms off. Call your oncologist, schedule an appointment, ask about GVHD as early as possible.”

- Roy, a patient with cGVHD

Video Transcript

Onscreen text: ROY’S STORY.

Roy: My name is Roy.

Roy: I’ve been living with chronic graft-versus-host disease, which is sometimes called GVHD, for 6 years. It was about a year and a half ago that I started Jakafi.

Onscreen text and narrator: BEFORE LISTENING TO ROY’S STORY, PLEASE LISTEN TO THE FOLLOWING SELECTED SAFETY INFORMATION

INDICATIONS AND USAGE

Jakafi® (ruxolitinib) is a prescription medicine used to treat adults and children 12 years of age and older with chronic graft-versus-host disease (GVHD) who have taken one or two types of treatments and they did not work well enough.

SELECTED SAFETY INFORMATION

Jakafi can cause serious side effects, including low blood counts: Jakafi may cause low platelet, red blood cell, and white blood cell counts. If you develop bleeding, stop taking Jakafi and call your healthcare provider. Your healthcare provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests. Tell your healthcare provider right away if you develop or have worsening symptoms such as unusual bleeding, bruising, tiredness, shortness of breath, or a fever.

Please see additional Important Safety Information at the end of this video and full Prescribing Information at Jakafi.com.

Roy: My first symptom was not reported immediately. I should have reported my symptoms earlier.

Kris: If I had acted upon that earlier, maybe it wouldn’t have ever gotten as bad as it was.

Roy: You need to watch for symptoms and catch them early because some symptoms can be mitigated if you catch them early. About 6 months after the stem cell transplant, I started to notice symptoms for GVHD.

Roy: My GVHD began with a rash across my chest.

Roy: And that was the indication that I actually had GVHD.

Roy: And then I got it in my eyes. I’ve got extreme dry eye, and it’s not that I can’t see, it’s that my eyes burn all the time.

Roy: I needed a lot of sleep. And I’m talking about fatigue that is physical and mental.

Roy: Fatigue is not being tired—it’s much more than that.

Kris: The leukemia and then the subsequent GVHD has totally changed what we can do together, because so much of his symptoms, even now with the GVHD, are pain and fatigue.

Roy: Some days I don’t think of it, but other days it’s debilitating.

Roy: I mean, it just hurts to do everything.

Kris: I think that the hardest part was watching the fatigue, because the simplest tasks he wasn’t able to do—walking up a flight of steps.

Kris: If I were to do something differently, I would be more involved in searching out the possible symptoms of GVHD.

Roy: So, it was probably a month or two after I had my first symptoms that we actually talked to the doctor about it.

Roy: I was told by the doctors at the very beginning of it: Different people get different symptoms.

Roy: I was watching out for anything because there are a whole array of possible symptoms. The symptoms can come and go and they progress as time goes by. Keeping a journal is a good idea because you tend to forget what happened a month ago or 6 months ago. A year ago.

Roy: If I were to go back, something I would highly recommend myself: Know what the symptoms are of chronic GVHD and when you experience a symptom, it’s important to talk to the doctor as soon as possible.

Roy: My oncologist had me on steroids for a time, but it wasn’t really helping.

Roy: He suggested a new medicine at that time, which is Jakafi.

Roy: After getting onto Jakafi, it has made a difference.

Roy: I realized, wow, I’m feeling better. I would say that the symptoms were not eliminated, but they were diminished noticeably.

Roy: I slept a lot. And that’s one of the symptoms that was reduced. And after Jakafi, I didn’t even need the afternoon nap.

Kris: I would say that you didn’t have to sleep until noon and then go back to bed is probably one of the biggest things; that the fatigue was reduced. Jakafi has helped Roy to gain more of his independence.

Roy: I’m really glad I can continue doing the hobbies I enjoy like playing the banjo and painting.

Roy: I actually always wanted to be an artist.

Roy: I went to a design school, became a professional artist, graphic designer, and I got very interested in egg tempera painting.

Roy: I do it because I love it and I do paintings for that, just for the meaning of them that they mean something to me and the people that are involved.

Roy: When it comes to the banjo. I know enough about banjos to bore you to tears. I know all the intricacies of how all the banjos are made. I know the different methodologies of how you play. I learned myself, taught myself from records.

Roy: When I was 16, my dad told his cousin and he says, “R’s learned to play pretty good.”

Roy: I play for my own enjoyment.

Roy: I really think it’s important to keep a positive attitude.

Roy: People that have a positive attitude experience better outcomes.

Roy: I’m living a much more normal life now than I was before I started Jakafi.

Roy: If I were to give myself advice, I would say: As soon as you experience a symptom of any kind, to talk to your doctor right away.

Roy: If your doctor recommends Jakafi, then I would recommend it, too.

Roy: This was my personal journey with Jakafi. Everyone is different and results may vary. Talk to your healthcare professional to see if Jakafi might be right for you.

Onscreen text and narrator: INDICATIONS AND USAGE 

Jakafi® is a prescription medicine used to treat adults and children 12 years of age and older with chronic graft-versus-host disease (GVHD) who have taken one or two types of treatments and they did not work well enough. 

IMPORTANT SAFETY INFORMATION

Jakafi can cause serious side effects, including:

Low blood counts: Jakafi may cause low platelet, red blood cell, and white blood cell counts. If you develop bleeding, stop taking Jakafi and call your healthcare provider. Your healthcare provider will do a blood test to check your blood counts before you start Jakafi and regularly during your treatment. Your healthcare provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests. Tell your healthcare provider right away if you develop or have worsening symptoms such as unusual bleeding, bruising, tiredness, shortness of breath, or a fever.

Infection: You may be at risk for developing a serious infection during treatment with Jakafi. Tell your healthcare provider if you develop any of the following symptoms of infection: chills, nausea, vomiting, aches, weakness, fever, painful skin rash or blisters.

Cancer: Some people have had certain types of non-melanoma skin cancers during treatment with Jakafi. Your healthcare provider will regularly check your skin during your treatment with Jakafi. Tell your healthcare provider if you develop any new or changing skin lesions during treatment with Jakafi.

Increases in cholesterol: You may have changes in your blood cholesterol levels during treatment with Jakafi. Your healthcare provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking Jakafi, and as needed.

Increased risk of major cardiovascular events such as heart attack, stroke or death in people who have cardiovascular risk factors and who are current or past smokers while using another JAK inhibitor to treat rheumatoid arthritis: Get emergency help right away if you have any symptoms of a heart attack or stroke while taking Jakafi, including: discomfort in the center of your chest that lasts for more than a few minutes, or that goes away and comes back, severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw, pain or discomfort in your arms, back, neck, jaw, or stomach, shortness of breath with or without chest discomfort, breaking out in a cold sweat, nausea or vomiting, feeling lightheaded, weakness in one part or on one side of your body, slurred speech.

Increased risk of blood clots: Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) have happened in people taking another JAK inhibitor for rheumatoid arthritis and may be life-threatening. Tell your healthcare provider right away if you have any signs and symptoms of blood clots during treatment with Jakafi, including: swelling, pain, or tenderness in one or both legs, sudden, unexplained chest or upper back pain, shortness of breath or difficulty breathing.

Possible increased risk of new (secondary) cancers: People who take another JAK inhibitor for rheumatoid arthritis have an increased risk of new (secondary) cancers, including lymphoma and other cancers. People who smoke or who smoked in the past have an added risk of new cancers.

The most common side effects of Jakafi include: for certain types of myelofibrosis (MF) and polycythemia vera (PV) – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea; for acute GVHD – low platelet counts, low red or white blood cell counts, infections, and swelling; and for chronic GVHD – low red blood cell or platelet counts and infections including viral infections.

These are not all the possible side effects of Jakafi. Ask your pharmacist or healthcare provider for more information. Call your doctor for medical advice about side effects.

Before taking Jakafi, tell your healthcare provider about: all the medications, vitamins, and herbal supplements you are taking and all your medical conditions, including if you have an infection, have or had low white or red blood cell counts, have or had tuberculosis (TB) or have been in close contact with someone who has TB, had shingles (herpes zoster), have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had cancer, are a current or past smoker, had a blood clot, heart attack, other heart problems or stroke, or have any other medical condition. Take Jakafi exactly as your healthcare provider tells you. Do not change your dose or stop taking Jakafi without first talking to your healthcare provider.

Women should not take Jakafi while pregnant or planning to become pregnant. Do not breastfeed during treatment with Jakafi and for 2 weeks after the final dose.

Please see the Full Prescribing Information, which includes a more complete discussion of the risks associated with Jakafi, at Jakafi.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

You may also report side effects to Incyte Medical Information at 1-855-463-3463.

Onscreen text: This video is sponsored by Incyte.
Jakafi and the Jakafi logo are registered trademarks of Incyte.
Incyte and the Incyte logo are registered trademarks of Incyte.
© 2024, Incyte. MAT-JAK-04793 08/24

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INDICATIONS AND USAGE

INDICATIONS AND USAGE

Jakafi is a prescription medicine used to treat adults with polycythemia vera who have already taken a medicine called hydroxyurea and it did not work well enough or they could not tolerate it.

Jakafi is used to treat adults with certain types of myelofibrosis.

Jakafi is used to treat adults and children 12 years of age and older with acute graft-versus-host disease (GVHD) who have taken corticosteroids and they did not work well enough.

Jakafi is also used to treat adults and children 12 years of age and older with chronic GVHD who have taken one or two types of treatments and they did not work well enough.

Important Safety Information

Jakafi can cause serious side effects, including:

Low blood counts: Jakafi® (ruxolitinib) may cause low platelet, red blood cell, and white blood cell counts. If you develop bleeding, stop taking Jakafi and call your healthcare provider. Your healthcare provider will do a blood test to check your blood counts before you start Jakafi and regularly during your treatment. Your healthcare provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests. Tell your healthcare provider right away if you develop or have worsening symptoms such as unusual bleeding, bruising, tiredness, shortness of breath, or a fever.

Infection: You may be at risk for developing a serious infection during treatment with Jakafi. Tell your healthcare provider if you develop any of the following symptoms of infection: chills, nausea, vomiting, aches, weakness, fever, painful skin rash or blisters.

Cancer: Some people have had certain types of non-melanoma skin cancers during treatment with Jakafi. Your healthcare provider will regularly check your skin during your treatment with Jakafi. Tell your healthcare provider if you develop any new or changing skin lesions during treatment with Jakafi.

Increases in cholesterol: You may have changes in your blood cholesterol levels during treatment with Jakafi. Your healthcare provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking Jakafi, and as needed.

Increased risk of major cardiovascular events such as heart attack, stroke or death in people who have cardiovascular risk factors and who are current or past smokers while using another JAK inhibitor to treat rheumatoid arthritis: Get emergency help right away if you have any symptoms of a heart attack or stroke while taking Jakafi, including: discomfort in the center of your chest that lasts for more than a few minutes, or that goes away and comes back, severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw, pain or discomfort in your arms, back, neck, jaw, or stomach, shortness of breath with or without chest discomfort, breaking out in a cold sweat, nausea or vomiting, feeling lightheaded, weakness in one part or on one side of your body, slurred speech.

Increased risk of blood clots: Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) have happened in people taking another JAK inhibitor for rheumatoid arthritis and may be life-threatening. Tell your healthcare provider right away if you have any signs and symptoms of blood clots during treatment with Jakafi, including: swelling, pain, or tenderness in one or both legs, sudden, unexplained chest or upper back pain, shortness of breath or difficulty breathing.

Possible increased risk of new (secondary) cancers: People who take another JAK inhibitor for rheumatoid arthritis have an increased risk of new (secondary) cancers, including lymphoma and other cancers. People who smoke or who smoked in the past have an added risk of new cancers.

The most common side effects of Jakafi include: for certain types of myelofibrosis (MF) and polycythemia vera (PV) – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea; for acute GVHD – low platelet counts, low red or white blood cell counts, infections, and swelling; and for chronic GVHD – low red blood cell or platelet counts and infections including viral infections.

These are not all the possible side effects of Jakafi. Ask your pharmacist or healthcare provider for more information. Call your doctor for medical advice about side effects.

Before taking Jakafi, tell your healthcare provider about: all the medications, vitamins, and herbal supplements you are taking and all your medical conditions, including if you have an infection, have or had low white or red blood cell counts, have or had tuberculosis (TB) or have been in close contact with someone who has TB, had shingles (herpes zoster), have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had cancer, are a current or past smoker, had a blood clot, heart attack, other heart problems or stroke, or have any other medical condition. Take Jakafi exactly as your healthcare provider tells you. Do not change your dose or stop taking Jakafi without first talking to your healthcare provider.

Women should not take Jakafi while pregnant or planning to become pregnant. Do not breastfeed during treatment with Jakafi and for 2 weeks after the final dose.

Please see the Full Prescribing Information, which includes a more complete discussion of the risks associated with Jakafi.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

You may also report side effects to Incyte Medical Information at 1-855-463-3463.