Patient Resources

Get helpful information to support you on your journey with OGSIVEO. See below for resources, inspiring stories, and more.

The OGSIVEO Patient Mentor Program

The OGSIVEO Patient Mentor Program* is a way to connect virtually with a real patient like you who is living with desmoid tumors and can relate to what you may be experiencing. This program is designed for you to have a one-on-one virtual video call with an OGSIVEO Patient Mentor during which you will hear their personal story of living with desmoid tumors and their treatment experience with OGSIVEO. To register for the OGSIVEO Patient Mentor Program, click the button below.

Please review our Consumer Health Data Privacy Policy before you proceed to the OGSIVEO Mentor Program registration

Get Connected

The OGSIVEO Patient Mentors have taken or are taking OGSIVEO and have personal experiences of living with desmoid tumors so they may relate to what you may be going through. As part of the program they may offer encouragement by:

  • Sharing their personal experiences starting OGSIVEO and staying on track with treatment as directed by their doctor and answering non-medical questions about their journey
  • Discussing support resources that they found helpful during their treatment journey, such as the SpringWorks CareConnections** Program based on their personal experience
  • Empowering patients and care partners to speak with their care teams to advocate for themselves and their health

During this program, OGSIVEO Patient Mentors are speaking only about their personal experiences. These experiences may not be representative of all patients and individual results and experiences may vary. OGSIVEO Patient Mentors are not medical professionals and cannot provide any medical advice or answer specific questions about OGSIVEO. Please contact your healthcare team with any medical questions or for medical information. OGSIVEO Patient Mentors are compensated for their participation in this program. Video calls are time limited sessions, limited to one video call per registrant. 




SpringWorks CareConnections is a free, personalized patient support program available to eligible patients who have been prescribed OGSIVEO. Terms, conditions, and eligibility requirements apply.

Holly K., an OGSIVEO Patient Mentor

Explore OGSIVEO Treatment Resources

Download a patient brochure to find out more information about OGSIVEO, including how OGSIVEO works, its possible benefits and side effects, dosing information, and more.

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Hear from real people who have been treated with OGSIVEO

Watch Dana’s story, Journey to OGSIVEO

For years, Dana tried different approaches. And then she found OGSIVEO. Learn about her treatment journey.

Watch Christina’s story, Diagnosis and Progression

What started as pain during yoga class turned into a desmoid tumor diagnosis for Christina. Hear about the beginning of her journey before starting treatment with OGSIVEO.

Watch Christina’s story, Treatment with OGSIVEO

Christina found a new approach with OGSIVEO after four years of trying different treatment options. Listen to her experience with OGSIVEO.

These videos represent the personal experiences of Dana and Christina only. Individual results may vary.

Ready to Talk to Your Doctor?

Create a Customized Doctor Discussion Guide

Below are 3 brief questions that you can answer to create a customized Doctor Discussion Guide that can help you prepare for your next appointment.

Here are some tips that may also help you prepare for your conversation:

  • Write down your personal experience
  • Be specific about your symptoms
  • Bring these items to your appointment:

    • This guide, either printed or digital form

    • A notepad to take notes

    • A list of all the medicines you are currently taking, including vitamins and supplements

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  • Question 1: Are you taking OGSIVEO?
  • Question 2: Are your symptoms changing, or do you have new symptoms? It may be helpful to keep track of any changes in your symptoms. Tracking symptoms may help your care team determine if they need to make any changes to your care plan.
    Check all symptoms that apply

    This is not a comprehensive list. You can write down any additional symptoms in the notes section of your guide.

    Please indicate level of pain:

    When talking to your doctor, consider describing your pain using specific terms like dull, sharp, throbbing, burning, or aching. It may also be helpful to share the frequency of your pain (eg, constant, intermittent).

    OGSIVEO may not help to treat all or any of these desmoid tumor symptoms.

    Next Step
  • Question 3: What questions do you have about OGSIVEO?
    Check all that apply
    Next Step
  • Your customized Doctor Discussion Guide is ready for you to download or email. Consider bringing this guide to your next appointment to help facilitate a conversation with your doctor. By selecting “Download My Guide” or “Email My Guide,” I agree that SpringWorks may process my health data to compile the “Doctor Discussion Guide” and in accordance with its Consumer Health Data Privacy Policy. The information used to create this Guide will not be retained once I have downloaded it directly from this site or it has been emailed to me.
    Download My Guide
    Email My Guide
  • Ready to get your customized Doctor Discussion Guide? Enter your email address below and we’ll send it straight to your inbox. This information is completely confidential and will not be saved for other use.

  •  

    Thank you! Your customized guide is on its way. If you don’t see it in your inbox within a few minutes, be sure to check your spam folder.
A healthcare provider showing a tablet to a patient

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Desmoid Tumor Education

Important Safety Information

What is OGSIVEO?  

OGSIVEO is a prescription medication used to treat adults with progressing desmoid tumors who require a medicine by mouth or injection (systemic therapy). It is not known if OGSIVEO is safe and effective in children.

Important Safety Information

Before taking OGSIVEO tell your healthcare provider about all of your medical conditions, including if you:

  • Have liver problems.
  • Are pregnant or plan to become pregnant. OGSIVEO can harm your unborn baby. Tell your healthcare provider if you become pregnant or think you may be pregnant during treatment.
  • Females who are able to become pregnant:
    • Your healthcare provider will give you a pregnancy test before you start treatment with OGSIVEO.
    • You should use effective birth control during treatment and for 1 week after the last dose. Talk to your healthcare provider about methods that may be right for you.
    • Stop taking OGSIVEO and tell your healthcare provider right away if you become pregnant.
  • Males with female partners who are able to become pregnant should use effective birth control during treatment with OGSIVEO and for 1 week after the last dose.
  • Are breastfeeding or plan to breastfeed. It is not known if OGSIVEO passes into your breast milk. Do not breastfeed during treatment with OGSIVEO and for 1 week after the last dose.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

You should avoid taking proton pump inhibitors (PPIs) and H2 blockers during treatment with OGSIVEO. Ask your healthcare provider if you are not sure if you take one of these medicines. 

How should I take OGSIVEO? 

  • Take OGSIVEO exactly as your healthcare provider tells you to take it.
  • Your healthcare provider may change your dose, temporarily stop, or permanently stop treatment with OGSIVEO if you develop side effects.
  • Take OGSIVEO 2 times a day with or without food.
  • Swallow OGSIVEO tablets whole. Do not break, crush, or chew.
  • If you take an antacid medicine, take OGSIVEO 2 hours before or 2 hours after the antacid.
  • If you vomit after taking a dose or miss a dose of OGSIVEO, take your next dose at your regular time. Do not take 2 doses of OGSIVEO to make up the dose.

What should I avoid while taking OGSIVEO? 

Avoid eating or drinking grapefruit products, Seville oranges, and starfruit during treatment with OGSIVEO.  

What are the possible side effects of OGSIVEO? 

OGSIVEO can cause serious side effects, including:

  • Diarrhea. Diarrhea is common with OGSIVEO and may sometimes be severe. Your healthcare provider may tell you to drink more fluids or to take antidiarrheal medicines. Tell your healthcare provider right away if you have diarrhea that lasts longer than a few days and does not get better after taking antidiarrheal medicines.
  • Ovarian problems. Females who are able to become pregnant may have ovarian problems and changes in their menstrual cycle during treatment. OGSIVEO may affect fertility which may affect your ability to have a child. Tell your healthcare provider if you have any changes in your menstrual cycle or hot flashes, night sweats, or vaginal dryness during treatment.
  • Liver problems. OGSIVEO can increase liver enzymes. Your healthcare provider will do blood tests to check your liver function before you start and during treatment with OGSIVEO.
  • New non-melanoma skin cancers. Your healthcare provider will do skin exams before and during treatment with OGSIVEO if you are at risk for skin cancer. Tell your healthcare provider if you have any new or changing skin lesions.
  • Electrolyte (salt) problems. Your healthcare provider will do blood tests to check your phosphate and potassium levels during treatment and may give you medicines to treat low phosphate or low potassium if needed. Tell your healthcare provider if you develop any muscle pain or weakness.

Tell your healthcare provider right away if you have any side effect that bothers you or that does not go away. Your healthcare provider may change your dose, temporarily stop, or permanently stop treatment with OGSIVEO.  

The most common side effects of OGSIVEO are: 

  • rash 
  • nausea 
  • tiredness 
  • mouth sores 
  • headache 
  • stomach (abdominal) pain 
  • cough 
  • hair loss 
  • upper respiratory infection 
  • shortness of breath 

OGSIVEO can affect fertility in females and males, which may affect your ability to have a child. Talk to your healthcare provider if this is a concern for you.
These are not all of the possible side effects of OGSIVEO. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

Please see full Prescribing Information and Patient Information for OGSIVEO.

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Important Safety Information

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