Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
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!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Niraparib Maintenance Drug? (Question)
Hello ladies,
I want to ask if anyone knows any information about Niraparib (Zejula)? From what I currently know it's a maintenance drug for ovarian cancer by Tesaro Drugs.
There is a campaign called: Not on My Watch "about the importance of maintenance therapy.." I just saw it posted on my facebook. Wondering if this is or will be approved in Canada and what patient population with ovarian cancer are eligible for it? For ex. is it just for the brca gene or any ovarian cancer patients?
The last time I read about Zejula was last year and it was just the US at the time. Trying to understand this and other maintenance therapies more, for women who do not fall into the "brca gene" group as I have recently learned that only they have access to Olaparib parp inhibitors.
Would like to see more options for other ovarian cancer types as well.
Thoughts? Comments?
Thank you in advance
I want to ask if anyone knows any information about Niraparib (Zejula)? From what I currently know it's a maintenance drug for ovarian cancer by Tesaro Drugs.
There is a campaign called: Not on My Watch "about the importance of maintenance therapy.." I just saw it posted on my facebook. Wondering if this is or will be approved in Canada and what patient population with ovarian cancer are eligible for it? For ex. is it just for the brca gene or any ovarian cancer patients?
The last time I read about Zejula was last year and it was just the US at the time. Trying to understand this and other maintenance therapies more, for women who do not fall into the "brca gene" group as I have recently learned that only they have access to Olaparib parp inhibitors.
Would like to see more options for other ovarian cancer types as well.
Thoughts? Comments?
Thank you in advance
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Comments
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Hi Luci22,
I just finished a 14-month remission time with Nirapatib on a trial protocol in Montreal at the cancer research center. It stopped working for me but 14 months was awesome. I am BRCA 2 positive but it's for anyone, not just the brca gene. Where are you from?1 -
Hi Fibi, We are in the Toronto area - my mom and I. That is a good long stretch, good for you. What happens next for you regarding your treatment?0
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Do they have other options after niraparib stops working?0
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My mother was on a drug trial for Olaparib and was negative for the BRCA gene. Dr.Covens (Sunnybrook/Toronto) is involved in the trial (called the LIGHT trial) and it takes candidates from all areas - not just those that are BRCA positive. Astra Zeneca is trying to gather information on how well it treats the various groups, including those that do not have the BRCA genetic mutation. It seems to have good results for all groups, however it works better for patients that have the BRCA mutation.
She was on for maybe 5-6mths and had good numbers but had to quit as the side effects were becoming too onerous and the drug stopped being effective for her.
She is now about to go back to "traditional" platinum-based chemo.0 -
I am part of a double blind clinical trial for Niraparib. I do not carry the BRCA mutation. I was diagnosed in May 2016 with advanced high grade serous carcinoma.I was operated on after 3 rounds of chemo, then another 3 rounds after the operation. I had a very good response to platinum based chemo. I started the trial in April 2017 and have been Ned for 22 months and feel well on what I believe is the drug, not the placebo. Initially my platelets dropped dramatically,so the dosage was adjusted from 300mg to 200 mg, then my hemoglobin dropped suddenly,so again the dosage was lowered from 200mg to 100.( which is the lowest dosage allowed for the trial) The sudden drops in my blood chemistry has led my oncologist and I to believe I am on the Niraparib drug. My muscles are a little weaker and I am a little more tired than what I remember I used to be , but over-all I rate my quality of life at 95%.1
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Hello @luvlife - thanks for sharing your experience - so pleased to hear you are managing well on the drug and the trail.
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It sounds like the medications are only available from trials? Is that the only way or can the drug be bought? AndWhere are the different trials done?
Thank you for commenting and sharing.0 -
@Luci22. Niraparib is currently available only through clinical trials.0
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Thank you all for sharing your experiences with Niraparib. I’m in the FIRST trial and have a good chance of getting this during maintenance.1
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Hi @nadiaC. The FIRST trial is very interesting. As you may know, as of now, Niraparib is not available after first line treatment so, yes, you may be placed in the arm of the study with Niraparib and when you are randomly assigned. Hope things go well for you!
Have you received a copy of our guide, By Your Side? It is a free book that you can order online here:
https://ovariancanada.org/living-with-ovarian-cancer/support-resources
I believe you have already been told about our office in Montreal. The Regional Director is Esteban Bongiovanni and he can be reached at ebongiovanni@ovariancanada.org or 1-877-413-7970 x331. (He will be back from vacation next week).
Great to have you on the site. Glad that you finding it so helpful!
Marilyn0
