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 (mfallis@ovariancanada.org).
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 (mfallis@ovariancanada.org).
Niraparib Zejula
Options
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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Hi everyone, my doctor wants me to start Zejula in January after my last frontline chemo. The side effects are worrisome to me. I am BRCA negative and HRD positive. Wondering if anyone here is on Zejula and can share your experience with it.Thank you!0
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Hi,
I am HGSOC Stage 3B. I finished my chemo in Nov. 2022 and went on Zejula at that time. Full dose of 200mg (for my weight) was intolerable and I was reduced to 100mg in late March 2023. At that time, the evidence for efficacy of Zejula was obscure...but a small ray of hope that it might delay recurrence...for those that are BRCA negative and HRD positive. As an aside, that you are HRD positive means that Zejula is more effective for you than for someone (like myself) that is HRD negative.
That small ray of hope expanded as of July 2023 when more research revealed that taking Zejula can delay recurrence for BRCA negative and HRD positive for "not reached vs 11.0 months" meaning that the not reached population did not have recurrence for the length of the study (just over 2 years)...versus those on placebo. You can google the study named "Treatment With Niraparib Maintenance Therapy in Patients With Newly Diagnosed Advanced Ovarian Cancer: A Phase 3 Randomized Clinical Trial. I am assuming optimal debulking in your case.
If I were you, I would have no hesitation in taking Zejula. Just be careful about the dosage as side effects can be intolerable. It appears that reducing the dosage does not affect outcomes...as long as there is no more than a month delay in going off the drug (to revive your system) and then resuming at a lower does. Some oncologists will start the patient on the lower does to see if the patient can tolerate it...then switch to the higher dose. This seems to be an oncologist's individual decision without the research to support that process.
Hope this helps.
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@ellie thank you for your reply. I take meds for my blood pressure so I know I’ll need to do a lot of monitoring if I’m on Zejula. Was your blood pressure affected at all? Also do you know if Zejula is the only parb used for BRCA negative HRD positive? Just wondering because my dr did not offer any other maintenance drug. Are you still on Zejula now? Thanks again for your reply!0
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Hi,
My blood pressure is normally low...any increase was more to do with the oncologist appt. rather than Zejula, I think. However, bears watching for sure.
Olaparib is for BRCA positive; Niraparib is for BRCA negative. There is a third PARP inhibitor but I have not read any research reports on its use. Other maintenance drugs for first time surgery/chemo include Avastin in combination with olapirib for HRD positive, but niraparib may be better as you are BRCA negative. Other drugs you may read about are generally for recurrence.
Hope this helps.1 -
Since December 2022. Still on it; CA125 is still behaving. Zejula at 100mg does not cause any discomfort...occasionally some nausea, but insignificant. I expect your are HGSCO? What stage?0
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Best of luck. We need all the gods working for us with this disease! Keep in touch as to how you are.1
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Hi, @Strongwoman
Thanks for checking in. You are amazing...and even more so (if that is possible) after I read your posts since early January. You are going through such challenging and uncertain times, and yet you remain so positive and supportive of us all. Any news on clinical trials from your last visit to PMCC? How are you doing?
As for me, I have not responded or engaged in ovdialogue for some time as I find it brings to the forefront of my thoughts what is always overhanging (i.e., ovarian cancer). I have felt great since last June and continue to be NED--just had a CT scan. However, my CA125 is very slowly creeping upwards even tho at 30 is still below the '35 is above ok' level. Had a very bad cold so perhaps that caused the slight increase. Hoping so but will be mid-Feb. before I find out.
We go from month to month to month.
Thanks again for checking in.
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@ellie That is amazing that you are still NED. I understand that one would want to put this behind them once they get to that stage. Hard to not let our minds wander and wonder when we see a trending upward effect of our CA125 levels. I get that too even if it is still within the norm range. Keep us posted if you have any updates. I will think good and positive thoughts for you that your NED status remains status quo for a long while.
As for me, I am doing ok. Take one day at a time which includes whatever my bowels decided they are going to do that day. Yesterday was a rough day and I went back to the liquid part of my low residue diet which helped. So, it's what I do. I am either in the mid-phase or back to liquid depending on the day. It seems some days that I will never get there but I have to have faith that it will all settle out at some point in time. Be kind to myself is what I go by now.
As for PMH, yes I found out that I was not eligible for the trial but he was kind and compassionate. He had suggestions for my team going forward which created some hope on my side of things. He wants Hamilton (Juravinski) to look at me again to see if I am a candidate for pro-active surgery regarding these bowel obstructions. I have a referral in and now just wait and see. He wants to discuss with my London Med Onc the results of my tumour testing and if they feel that we should re-challenge the trial medication I had a year ago which resulted in a toxicity reaction. Again, waiting to hear on that. He put forth a suggestion that if my bowels remain calmed down (no new episodes) in a month's time that we switch my oral medication from Letrozole to Tamoxifen. I am positive there will be side effects but am willing to give it a go especially if the other med is not working which it looks like it may not be. If that does not work, then again as long as my bowels cooperate, we may go to weekly Paclitaxol infusions. So, as I stated, I left feeling quite hope-full as I really thought all I would get was a you are not eligible and see-ya! Nice to know he was concerned and offered some suggestions. I will keep all posted as I go along with things.
Nice to hear from you and hope you continue to do well.
Take care
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Wow...is wonderful that you found someone who wanted to spend time...and is thinking about you. Do hope something works out as a positive next step. Keep is touch...my thoughts are with you.0
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@ellie Thank you for your kind words. It has been a rough week for me emotionally. It will pass, I am sure but have brief moments of sadness. My hubby has been amazing and is very understanding which helps. Reassures me it is my cancer and not me and to be patient with myself and us. Probably this time of year too.....they reported today that in most of Ontario for the month of January we saw only 5 days of sunshine. Thank goodness it looks like we have a high pressure system descending upon us which will keep everything out that is set to arrive tomorrow afternoon and stay for 7 days. 7 days of sunshine.....my goodness, I don't know what we all will do. Walk around deliriously happy and glow from the warmth and how it touches our very souls! Beautiful is all I can think of and to get out on a couple of walks with my son during the daytime.
Hope you are doing well. Keep us posted. 0 -
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@ellie Good Morning. I thought I would check in. I believe you were waiting for your CA 125 results to come back in February. Have you received those results? What are things looking like for you? Still NED? How are you doing in general?0
