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Niraparib Zejula

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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. 


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Comments

  • Strongwoman
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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.
    Take care
  • ellie
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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.



  • Strongwoman
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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.  
  • 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. 
  • Strongwoman
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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 
  • 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! 
  • 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.  

  • @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! 
  • 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.
  • Thank you @ellie. How long have you been on Zejula?
  • 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?
  • @ellie I’m happy to hear you are having good results! That’s encouraging! I am high grade serous stage 3c I had debulking in September. It originated in fallopian tube and spread to peritoneam
    and omentum. I hope I can tolerate Zejula! 
  • Best of luck.  We need all the gods working for us with this disease!  Keep in touch as to how you are.
  • Strongwoman
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    Hey @flory and @ellie Wanted to check in to see how you are doing and where you are at with treatment/no treatment etc. Drop a line when you can.  
    Take care  <3
  • ellie
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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.




  • Strongwoman
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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. :smile:
      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  <3
  • ellie
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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.
  • Strongwoman
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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.  <3
  • ellie
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    🤗
  • Strongwoman
    Strongwoman Moderator
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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?
  • Good morning, I haven't been on this site in a very long time. Keyboarding and reading are proving difficult at times. I've been on Zejula since August 16, 2023. 300mg had my Labs crashing after only 3 weeks! 3 weeks off, then 200mg. My Labs crashed again but thankfully not to the point I needed transfusions again. The side effects of 200mg were not sustainable and I've been on 100 mg since around November.

    I've found Zejula to have worse side effects than carbo or taxol or avastin. I am on so many blood pressure and beta blockers meds now it was somewhat disheartening for a while. Unfortunately Zejula doesn't seem to be working for me as my CA125 has been rising steadily since November.

    I've learned that no measurable disease or no measurable nodularity mean the tumors are smaller than 1mm. But they are present.

    This is my second recurrence since November 2022. Depending on my next set of CT scans and Lab results I will ask my Oncologist about MIRV. It is in phase 3 trials here in Ontario and in use in the USA for some time now. The side effects are very disconcerting but hope springs eternal and I am always hopeful. If not MIRV I have faith the Dr's at Princess Margaret will have something else for me to try. They have been wonderful these past 5 years.

    I wish happiness and faith and courage to all.

    Talk soon

  • flory
    edited May 21
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    I am taking Zejula as well. I am 4 months post frontline and I am taking 100mg per day. Waiting to see if my CA 125 rises or stays the same.

  • flory
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    my ca 125 has gone from 10 to 12 to 14. While on Zejula. Doesn’t this mean it isn’t working? I’m only 4 months out from frontline. Could this be a reoccurrence? Feeling a lot of anxiety!!

  • Strongwoman
    Strongwoman Moderator
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    @flory Reading the numbers can cause anxiety for sure and what you are feeling is normal. I would say based on what you have written that it is safe to say that you are not experiencing a recurrence. A normal range is 35 and under. Generally, when looking at CA 125 levels, they are looking at whether it is trending up or down and during treatment it can fluctuate. Do you have 2 more rounds of chemo left? If so, have you discussed what will happen after that (when treatment finishes)? With this all being new to you, it can feel overwhelming and at times like we are treading water. How have you been feeling while on treatment? Doing ok? Let us know how we can help you through this.

  • Strongwoman
    Strongwoman Moderator
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    Yes, @danidelbiondo a couple of the lady's have looked into the MIRV and there may be some post threads you can read if you have not already done so. Just type in MIRV or the other name for it and it should pop up. If my memory serves me correctly, the side effects are a bit disconcerting for it. I found the team I met at PMH very knowledgeable and helpful and positive that if that is perhaps not the right one for you, that they will have some alternative suggestions as to what to do next. Whatever it is, my hope is that there is something that will work for you and hopefully with minimal side effects. Thank you for sharing what you learned regarding nodularity as well. It is useful information for many of us.

    Keep finding that courage to move forward every day like you are and if you have a dark day, well let it be. Tomorrow is a new day. 🤗

  • flory
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    thanks for your reply @Strongwoman. I finished my last chemo in January. My March ca was 10 April 12 and today it is 14. Seems to be rising 2 points every month. I am trying to not worry but that is often difficult to do! I guess if it keeps rising I will get a scan.

  • Strongwoman
    Strongwoman Moderator
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    I can see why your anxiety is up. Thank you for a little more context to your journey @flory In my experience, CA 125 level was continued to be monitored monthly and CT scan every 3 months. Perhaps that will or is the protocol for yourself as well? Fluctuating CA 125 levels below the 35 norm mark I think are to be expected. I know this is hard and difficult to not send one's mind spinning. Waiting to see what your next blood test reveals and talking to your Oncologist about it would be a next step. I am hoping this will give you some comfort or ease your mind a little in the meantime.

    When we finish treatment, our minds start processing every little twinge or pain as we are trained to do and report while we are in treatment. It is like a bandage being ripped off vs gently tugged is an analogy to use when one finishes chemo. We get conditioned to reporting our every little symptom that when we are no longer in treatment it almost feels like we are alone. I encourage you to write a journal and report your symptoms in it (if you are not already) or any changes you feel warrant notice and that way you have it to refer back to when needed. It might also put your mind at ease as well. I have seen some ladies describe going through some stages of grief after finishing treatment. This makes sense when our physical bodies are busy healing between treatments and our mental/emotional state is focused on what everything means at the time. That when we finally have time to reflect and ponder everything we have went through, other emotions come forward. All a normal part of the process. The constant monitoring and scheduling comes to a halt and we then have to figure out how to fill our day when we feel well enough to do so. Does any of this either make sense to you or resonate with how you may have been feeling these past few months? Let us know how we can help you through the wait game in the meantime. 🤗

  • flory
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    Thank you for this @Strongwoman. You are right when you say every little thing sends my mind spinning! I appreciate the thoughtful advice and insight to coping with this disease. My ca 125 was only 36 when I was diagnosed at stage 3c with extensive spread in my abdomen. Maybe this marker is not a good one for me? Or as my anxiety tells me that every little rise is bad news! I will keep myself distracted until my next test in June. Thanks again!

  • ellie
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    Hi @flory

    I do have some thoughts on what you are going through. I have done a dive into articles on fluctuations of ca125 and I have experience with that while on Zejula. I assume your diagnosis was high grade serous? Mine was as well…my ca125 did ultimately rise to over 500 by my surgery date, and fell sharply after as well as further during chemo. My lowest number was 17 after 5 rounds of chemo (called a nadir). Obviously your body is not particularly sensitive to ca125 since it was only 36 at time of a 3c diagnosis.

    Assuming that, articles suggest that if your nadir doubles, then PMCC will schedule a scan—even if below 35. Mine started to rise after about 6 months after starting Zejula. Today it fluctuates between 22 and 30 (I have been on Zejula since Dec 2022—about 16 months). If I have a cold, it will rise 1 or 2 points. The range of fluctuation is actually consistent with where the ca125 was after 6 months of Zejula, that is somewhere between 22 and 28. I was concerned but saw fluctuations up and then down—which allayed my fears.

    Hope this helps. let me know if you have any questions.

  • flory
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    thank you @ellie. That info is helpful. So if my lowest number was 10 I may get a scan if it reaches 20? How many milligrams of Zejula do you take? I started at 100 mg and now increasing to 200 mg.