Suzanne’s Story


Hear Suzanne’s story about acute graft-versus-host disease

Learn how Jakafi® (ruxolitinib) helped move Suzanne’s journey forward when her acute graft-versus-host disease (GVHD) did not respond to steroids. ...more

Video Transcript

Suzanne: I’m Suzanne.

Suzanne: I’m an outdoorsy kind of person.

Suzanne: I like to go hiking. I like to go fishing…I like to ride my quad ATVs out in the desert.

Suzanne: My journey started off in October 2016…

Onscreen text: Suzanne was diagnosed with acute lymphoblastic leukemia.

Suzanne: ...when I was diagnosed with acute lymphoblastic leukemia.

Suzanne: After that it was a whirlwind. They started chemo the next day…they wanted to try and get me into remission as soon as possible.

Suzanne’s mom: When she was in the hospital, it was pretty bad because she was getting everything depleted from her body. She would cry, I would cry, and we’d pray. And that’s how we got through it.

Suzanne: They felt that it would be a better situation if I were to go ahead and have the stem cell transplant.

Suzanne: So I thought, "Okay, well…I'll get the stem cell transplant."

Onscreen text and narrator: Suzanne had an allogeneic stem cell transplant, a procedure in which a patient’s cells are replaced with donor cells.

Suzanne: …from there you just wait. You have nausea, you have other things and issues that come up from the stem cell transplant because your body, your host, is fighting.

Suzanne: Three weeks later to four weeks, I felt something a little bit off.

Suzanne: ...a little bit more heat coming from me and I started to have a fever…I was told to go back into the emergency room.

Onscreen text: Suzanne’s inflammation and other skin symptoms were signs of acute graft-versus-host disease of the skin.

Suzanne: I woke up the next morning and I had skin graft-versus-host completely throughout my whole body…and it was just red dots, a rash…my head was completely expanded.

Onscreen text: Acute graft-versus-host disease (GVHD) is a serious complication that may affect people who have had a stem cell transplant using cells from a donor.

Suzanne: They diagnosed it as moderate to severe graft-versus-host disease for the skin.

Onscreen text: Acute GVHD mainly affects

  • The skin
  • The liver
  • The gastrointestinal tract (stomach, intestines, and colon)

Patients may experience symptoms or other health problems in any of these organs because of acute GVHD.

Suzanne: When they said that, it was like another rug pulling out from underneath me.

Suzanne: They told me put on cream. They tried the prednisone, the steroids; it was not reacting fast enough. My skin was burning.

Suzanne: I couldn't shower…I couldn't get too hot. I couldn't get too cold.

Onscreen text: Suzanne’s inflammation and other skin symptoms were signs of acute graft-versus-host disease of the skin.

Suzanne: Any type of sensation of heat, anything in my mouth that was hot, I really had a hard time, because it would just swell up my face and it would exacerbate the condition.

Suzanne: …and then I was approached to do a clinical trial.

Onscreen text: In a clinical trial, it’s unknown if a drug will work or what the side effects may be.

Narrator: When patients participate in a clinical trial, it’s unknown if a drug will work or what the side effects may be.

Onscreen text: As a clinical trial participant, Suzanne received Jakafi® (ruxolitinib) at no cost from Incyte Corporation.

Suzanne: …I heard the name Jakafi® …and I said, “OK, let’s go ahead and try.”

Onscreen text: Jakafi® (ruxolitinib) is a prescription medicine available as a pill. It 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.

Narrator: Suzanne participated in a clinical trial of Jakafi® (ruxolitinib), a prescription medicine available as a pill. It is approved 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.

Onscreen text: Jakafi is the first prescription medicine approved by the FDA for the treatment of these patients.

Suzanne: Jakafi worked for me….My body responded very well.

Onscreen text and narrator: Jakafi is not for everyone. Only your Healthcare Professional can decide if Jakafi is right for you. Your individual results may vary. Jakafi® (ruxolitinib) can cause serious side effects including low blood counts and infection. Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Increases in blood cholesterol levels can also occur. The most common side effects of Jakafi for acute GVHD include: low platelet, red, or white blood cell counts, infections, and fluid retention. Tell your doctor about any side effect that bothers you or that does not go away. To learn more about these and other risks, please see the Important Safety Information later in this video and the Full Prescribing Information, which includes a more complete discussion of the risks associated with Jakafi.

Suzanne: I think it was 10 days after that I was released from the hospital…

Suzanne: …and came home and I started to recover.

Suzanne: I started really thinking about a new normal…

Suzanne: …and I try to limit myself from being at high-risk situations.

Suzanne’s dad: Because of the germs spreading…I haven’t hugged Suzanne in over two years, ever since she got sick. I haven’t hugged her and, and it’s hard.

Suzanne: He is very patient with me, my husband, and my parents, and we just communicate very well to what I need and exactly what it is that I feel and the relief I have that they’re there.

Suzanne: You’re fearful of everything that comes your way. That’s not a way to live.

Suzanne: Giving up wasn’t an option…it’s not giving up, you don’t give in…you just, you just don’t let it win.

Suzanne: It has been a tremendous help in my recovery.

Onscreen text: This is Suzanne’s experience with Jakafi. Your experience may be different.

Suzanne: …I think my skin looks pretty good. So…

Suzanne: It's just been an amazing journey to see myself from 5 to 6 months ago or even a year ago to really look at it now, to see how much I've incorporated into my life again.

Suzanne: The other day I told my husband, I said, "You know, my goal is to get on that roller coaster again, take a trip to Magic Mountain.…" I'm not quite there yet, but I, I figure, you know, I’m doing it slowly but surely.

Onscreen text: For more information about Jakafi, visit Jakafi.com.

Onscreen text and narrator: Important Safety Information

Jakafi can cause serious side effects, including:

Low blood counts: Jakafi® (ruxolitinib) may cause your platelet, red blood cell, or white blood cell counts to be lowered. If you develop bleeding, stop taking Jakafi and call your healthcare provider. Your healthcare provider will perform blood tests 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.

Skin cancers: Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Tell your healthcare provider if you develop any new or changing skin lesions.

Increases in cholesterol: You may have changes in your blood cholesterol levels. Your healthcare provider will do blood tests to check your cholesterol levels during your treatment with Jakafi.

The most common side effects of Jakafi include: for certain types of MF and PV – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea; and for acute GVHD – low platelet, red or white blood cell counts, infections, and fluid retention.

These are not all the possible side effects of Jakafi. Ask your pharmacist or healthcare provider for more information. Tell your healthcare provider about any side effect that bothers you or that does not go away.

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 tuberculosis (TB) or have been in close contact with someone who has TB, have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had skin cancer, 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.

Onscreen text: Already taking Jakafi? IncyteCARES is a patient support program for people taking Jakafi that offers financial assistance options and other patient resources for eligible patients.

VISIT IncyteCARES* TO LEARN MORE
*IncyteCARES: Connecting to Access, Reimbursement, Education and Support

Onscreen text: The video is sponsored by Incyte Corporation.
Jakafi and the Jakafi logo are registered trademarks of Incyte.
© 2020, Incyte Corporation. MAT-JAK-00603  03/20

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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 also 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.

Important Safety Information

Jakafi can cause serious side effects, including:

Low blood counts: Jakafi® (ruxolitinib) may cause your platelet, red blood cell, or white blood cell counts to be lowered. If you develop bleeding, stop taking Jakafi and call your healthcare provider. Your healthcare provider will perform blood tests 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.

Skin cancers: Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Tell your healthcare provider if you develop any new or changing skin lesions.

Increases in cholesterol: You may have changes in your blood cholesterol levels. Your healthcare provider will do blood tests to check your cholesterol levels during your treatment with Jakafi.

The most common side effects of Jakafi include: for certain types of MF and PV – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea; and for acute GVHD – low platelet, red or white blood cell counts, infections, and fluid retention.

These are not all the possible side effects of Jakafi. Ask your pharmacist or healthcare provider for more information. Tell your healthcare provider about any side effect that bothers you or that does not go away.

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 tuberculosis (TB) or have been in close contact with someone who has TB, have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had skin cancer, 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.