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Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.

Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!

Niraparib (Zejula)

JustHappyToBeHere
JustHappyToBeHere
in Treatment
Hi, I'm new to OV Dialogue.  I was diagnosed with stage 3C HGSC on December 2nd.  I am BRCA negative.  Had 3 rounds of chemo, surgery (all visible cancer removed) and just completed my second round on the back end.  I recently spoke with one of my doctors who told me she would like me to consider using Niraparib after I've finished the chemo.  I worry about adverse effects it may have on my body and despite doing a lot of research can't seem to come to a decision on whether or not to use it.  I intend to adopt an extremely healthy lifestyle and work with a naturopath who specializes in cancer after the chemo.  Have any of you declined it?  If so, would you mind sharing your reasons?  I appreciate any feedback.

Comments

  • Fearless
    Fearless Legacy
    @JustHappyToBeHere Welcome and love your screen name. I think it speaks to all of us.  I too was HGSC 3C BRCA negative but back in 2017 where there were no PARP inhibitors available to non-BRCA patients to reinforce remission.  I cut and pasted a recent communication from Ovarian Cancer Canada regarding the approval just received for the use of Niraparib (Zejula) for patients such as yourself.  OCC did a lot of information gathering on the subject and I suggest you reach out to Tracy Kolwich at OCC who was involved in that research.  She may be helpful in providing information to assist you in making an informed decision on use of that treatment. You can connect with Tracy at tkolwich@ovariancanada.org and I have flagged her here as well....  @TracyOCC/

    In addition we have had many of our members either  BRCA positive and using the drug as approved, or non BRCA who have been trial members.  I am going to hope many of them will share there experiences in the comments to your question. But if you go to the search box in upper right of your screen and type in the keywords....Zejula, Niraparib, PARP you will be able to access those discussion threads by clicking on them in the pop up.

    I am sorry for your diagnosis and hope the positive effects of your treatment continue, with or without assistance of medication.  The OCC website does have an enormous amount of information in the form of videos, links to information, survivor stories etc. that you may find helpful  as well.

    Please use our site and membership as needed....we're always here to share our experiences.  And reach out to me if you encounter any problems navigating OVdialogue or the OCC website.  We also offer a weekly online live chat for real-time connection to our members.  Love to have you join us.  The live chat iis hosted by me and runs each Thursday at 1pm EST.  You need only sign in and then click on the  Teal Thursday topic  in the Discussions list to access the chat.. 
     

    Copy of recent OCC announcement  regarding the  approval of Niraparib: 
    Drug access update: Thank you to everyone who supported Ovarian Cancer Canada's patient submissions to the pan-Canadian Oncology Drug Review and L’Institut national d’excellence en santé et en services sociaux (INESSS) regarding Zejula (niraparib). As a result, Zejula is being recommended for funding in the first-line treatment setting for certain cases of ovarian cancer, regardless of whether there is a BRCA gene mutation. This positive recommendation applies to those with newly diagnosed advanced (stage III or IV) high-grade serous or endometrioid tumors who are in complete or partial response to first-line platinum-based chemotherapy. As next steps, the pan-Canadian Pharmaceutical Alliance will negotiate pricing with the manufacturer, GSK. In the meantime, if you qualify for this drug please speak to your oncologist to determine whether you’re eligible for the GSK Patient Support Program.

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