Patient Resources

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

I want to know if OGSIVEO may be right for me

Explore resources to learn about OGSIVEO and ways to discuss it with your doctor. You can also sign up for updates below. Using this information, you can speak with your doctor and determine if OGSIVEO is right for you.

Patient Brochure

Download a patient brochure for information on OGSIVEO including its possible benefits and side effects.

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Sign Up & Stay Informed

Sign up for information, tips, and resources to help you talk to your doctor as you navigate your treatment journey.

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  • Download Doctor Discussion-Guide Download Doctor Discussion-Guide

    Create a Customized Doctor Discussion Guide

    Create your own customized Doctor Discussion Guide to prepare for your next appointment. This guide can help you have a productive conversation with your care team.

    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 of the medications you are currently taking, including vitamins and supplements

    If you have consented to cookies through our Cookie Settings, we will process your city and state location through cookies and related technologies. This is to allow SpringWorks to understand geographic interests in its products and services. This information will not be used to identify you. The city and state will be shared with service providers who may help SpringWorks to review and aggregate information. If you do not wish to allow tracking of the city and state, you will need to turn off your consent to cookies and refresh your web browser before you begin the Doctor Discussion Guide questions.

  • 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.

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    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.

I have a prescription for OGSIVEO

Find resources designed to help you navigate your treatment journey. You’ll find ways to track your treatment experience, connect with others, and access additional support.

Digital Resource Kit

The OGSIVEO Digital Resource Kit provides tools and information that may be helpful during treatment. Download the kit to access detailed brochures about OGSIVEO and Savings & Support with SpringWorks CareConnections®, as well as a Treatment Tracker that can help you track symptoms and possible side effects.

Download
Treatment Tracker

Treatment Tracker

Be your own health advocate with our Treatment Tracker. Logging potential side effects and symptoms can help your care team support you during treatment.

Download the Tracker
Mentor Program

Mentor Program

The OGSIVEO Patient Mentor Program® connects you with a fellow patient for a one-on-one video call to provide insights into their journey and offer support.

Get Connected
SpringWorks CareConnections®

SpringWorks CareConnections

Whether you are newly diagnosed or have had your condition for years, dedicated Nurse Advocates at SpringWorks CareConnections® will be by your side throughout your treatment journey.

Learn More

Independent Patient Assistance Foundations*

Financial assistance may be available through independent foundations that are not controlled by or otherwise affiliated with SpringWorks Therapeutics. These foundations may be able to assist with copays, premiums, patient education, social services, etc.

SpringWorks Therapeutics does not influence or control the operations of independent patient assistance foundations and cannot guarantee assistance will be provided. Details and eligibility requirements can be found directly on the individual foundation websites.

Explore additional foundations that may be able to help with financial assistance

View Foundations

This link is created by Real Endpoints. Real Endpoints is independent of SpringWorks Therapeutics. SpringWorks is providing a link to these foundations to help patients find more information about potential assistance, but inclusion on this list does not represent an endorsement or a recommendation from SpringWorks for any group or organization.

I want to hear real patient stories

Watch patients speak about their personal journeys, from diagnosis to their experiences with OGSIVEO.

Dana’s Journey to OGSIVEO

Hear about Dana’s treatment journey and how she found OGSIVEO.

Christina’s Diagnosis and Progression

Hear about Christina’s desmoid tumor diagnosis and her story before OGSIVEO.

Christina’s Treatment with OGSIVEO

Watch Christina share her experience with OGSIVEO after trying other treatment options for 4 years.

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

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Living With Desmoid Tumors
What is Ogsiveo?
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.

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.

Please see full Prescribing Information and Patient Information for OGSIVEO.

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References