Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 ([email protected]).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 ([email protected]).
Niraparib Zejula
Dealing with a first recurrence for HGSOC. I was stagec 3c, suboptimal debulking in 2019. Since it metastasized to my spleen I am now stage 4. I have developed an allergy to carboplatin but it's being managed. I am to start Niraparib when this 2nd cycle of chemo ends but with all this confusion I need to have a meaningful discussion with my Oncologist. I also don't like the life limiting side-effects of Niraparib.
Is anyone still on Niraparib? Did Dr's pull you off it around November or in 2023?
I guess I need to wait and see. I'm not good with wait and see but in this case there is too much new information not yet out there. One study indicated there were too many deaths in the trials.....can no longer find this. Perhaps it was incorrect and has been pulled. That's it for me. Thanks
I'm living my best life, regardless of these concerns.
Is anyone still on Niraparib? Did Dr's pull you off it around November or in 2023?
I guess I need to wait and see. I'm not good with wait and see but in this case there is too much new information not yet out there. One study indicated there were too many deaths in the trials.....can no longer find this. Perhaps it was incorrect and has been pulled. That's it for me. Thanks
I'm living my best life, regardless of these concerns.
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@danidelbiondo
So hard isn't it? Choices and decisions on top of the disease itself and what we go through.
I don't have HGSC but try typing that drug name in the search bar and see what the other ladies are saying about it and their experiences. I do know it has been a topic of conversation previously.
Quality of life is a factor for some and for others not. I, personally, base my decisions around quality of life versus expected side effects or outcomes. But that is me. I wish you the best whatever you decide.
I am positive some other ladies will respond to you in the coming days.
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Hi @daniedelbiondo
Just read your question on niraparib and want to share my experience and a recent research study.
I was diagnosed with stage 3b high grade serous OV in April 2022. I subsequently went through chemo and started Niraparib in December of 2022 at 200mg per day. With that dosage, my hemoglobin eventually tanked and I was taken off the drug for 3 weeks and then went back on a half dose, which i am still on today. The full dose was terrible for side effects but the half dose is wonderful in that i have almost no side effects.
Recently (early July) a research study was published that changed the meaning of the drug for me. Prior studies showed an 'overall population' benefit of delay in recurrence that was 2 to 3 months more than what a placebo did. Prior studies had more than 50% of participants in Stage 4. The latest study selected Stage 3 participants and found a delay in recurrence over the placebo of just less than a year, that is, 8 to 9 months more than previous studies. It was wonderful news!
Regarding the dosage, some OV dialogue participants have started on the half dose--100 mg--and then if they functioned well on that, were increased to 200mg. This is not standard practice--but I can only imagine that starting with 100mg with few side effects would have been so welcome.
Hope this helps.
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@danidelbiondo Hello. Checking in to see how you are doing with your treatment and if things are any better. Feel free to share when you are ready. I am hoping you are doing ok (meaning minimal side effects) with it. These are tough decisions to make around treatment options due to side effects and the quality of life we all choose to live surrounding it.0
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I was diagnosed with Ovarian cancer in January 2022. I had 6 chemotherapy treatments 3/ complete hysterectomy/ then 3 more. I have been on Niraparib since November 2022. I took 300 mg daily for about 10 weeks. My hemoglobin levels dropped. I had a two week break then continued with a 200 mg dose thereafter. I am still taking it.0
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@CGayle Hello. Welcome to our group. I see you have posted,thank you for the post and your contribution. I want to make sure I am not missing anything. Are you adding to the post topic or is there something that you want to know or get more support. Kindly let me know
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