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  • 1.  Post chemo plan

    Posted 28 days ago

    Hello 

    I've been researching my post chemo options - very confusing.  It also doesn't help that i have had technical difficulties with my computer and phone which has made it hard for me to sort through information on this site.  You are all an impressive group of women with a wealth of valuable information and I'm happy to have found you all but sorry that we are in the same battle.  Also, thank you @alwayslearning and @meinvan for your previous reply to my original email. 

    My background is that I was diagnosed February 2025 with a probable cancerous tumour.  On April 10 I had the usual surgery for OV cancer - hysterectomy, oophorectomy and debulking also, a bowel resection and appendix removal. 

    My pathology came back with HGSC OV cancer stage 2A for the left ovary, fallopian tube and uterus.  All the other parts taken showed no cancer.  I felt in a bit of a hopeful place with the stage 2A diagnosis but that was quickly taken away from me when i was told i was BRCA negative .  It was so nice to hear in terms of my family and the hereditary aspect but i was told there was little for me in PARP inhibitors post chemo.  While waiting for my last pre chemo appointment with my oncologist ( I am very happy with her and feel she is very knowledgeable ) I did some research - i have only come up with Zejula as a possible option for me.  But I also read a posting from GSK stating the FDA has commented on the PRIMA trial and has concluded that the risk-benefit for  HRD negative patients is no longer favourable.  I hope i got the gist of that correct.  I am also hoping i can get confirmation or additional information from the group.  Maybe there have been some trails with more favourable reports?  When I asked my Dr about taking Zejula at our last appointment she said it may not be beneficial to me and would at best possibly postpone a recurrence by a few months.  She encouraged me to do my research and consider the possible side effects.  When i asked her what she would recommend if I was her mother she said she probably would not recommend it . 

    I have an appointment to review my CT scan on the 15th.  I know i have to start taking Zejula by 8 weeks past my last chemo - which was August 27.

    Thanks for listening. I'm not feeling too great about my path forward. 



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  • 2.  RE: Post chemo plan

    Posted 28 days ago

    Good morning,

     

    I read your post with great interest and care and wanted to let you know that I am also BRACA 1 & 2 negative, and HRD negative. There is a lot of confusing 'information' out there about Niraparib (Zejula) and I wrote about my experience of being on Zejula for 2+ years now and doing excellently!!

     

    Zejula is the PARP Inhibitor used for BRACA negative women like you and me. I wrote a lengthy post on here about a week or so ago. I'm going to find it and repost on your thread. I hope it will offer you some comfort!

    Judith

     

     






  • 3.  RE: Post chemo plan

    Posted 26 days ago

    Thank you @judith for your reply - I found your posting that you referred to.   That is helpful information- I very much appreciate it.  I'm so happy to hear that you are doing so well.  I've been down a rabbit hole and am thankful for positive information 




  • 4.  RE: Post chemo plan

    Posted 25 days ago
    Hello again!

    I completely understand the confusing, contradictory, and incorrect 'rabbit hole', I think we all have had our times in that swirling universe! It's so hard to tease out what is true, what is relevant, and what should you do next. I'm doing well on Niraparib, when some of the literature says I shouldn't be because I'm BRACA 1 & 2 negative, and HRD negative.

    Here's the thing: In the PRIMA III trials, patients who were HRD negative had fewer months of PFS than those who were given a placebo. Ok, whatever. The researchers didn't openly share that those on a placebo eventually recurred and were given another PARP, thus 'achieving' longer PFS.  I'd say a bit of massaging of the stats was going on perhaps??

    Regardless if you are HRD positive or negative, the difference is in months, not years, so to me, it's an irrelevant 'stat'. I'm alive and doing well. I didn't learn my HRD status until earlier this year, after being on Niraparib for 18 months or so. It wouldn't have made a difference to me anyway, my gyn/onc surgeon recommended I take the PARP, I met the criteria, and here we are ��

    Take care,

    Judith





  • 5.  RE: Post chemo plan

    Posted 28 days ago

    @pepperbee thanks for the post we are both travelling a very similar journey from our diagnosis to surgery to post chemo treatment.  My cancer was not stageable even with the pathology from surgery, just considered advanced due to presentation at diagnosis, what that means stage 3, stage 4 ?  I don't know. My biopsy from surgery was positive i. Left ovary/tube, right ovary, cut de sac, and tumor attached to my colon. I'm brca beg and unknown hrd.  Only briefly discussed zejula, I expect a longer discussion on October with my doctor at our next meeting.  Just finished my last chemo yesterday and now waiting on my post op post treatment CT scan.  I'm finding it a tough decision to make too but I think if offered to me it is worth a shot and if side effects are too much I can stop it.  Or do you take the chance and feel normal with no side effects but will I always worry if the cancer comes back fast because I didn't take the treatment.  It's so hard. I too appreciate the sisters inputs on this from their lived experiences.  Please keep us updated on your decision and how it is going on your journey🩵🤞🙏🏻

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  • 6.  RE: Post chemo plan

    Posted 26 days ago

    Thank you for your reply @Meinvan. We are on a very similar journey.  I am hoping I can ask my oncologist more questions at our meeting and I will then make my decision.  Keep me posted of your decision and maybe deciding factors - maybe something I hadn't thought of - if you are comfortable with that.   

    Have a good week 

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  • 7.  RE: Post chemo plan

    Posted 25 days ago

    @pepperbee I will let you know what is discussed and if anything is offered to me post treatment.  My appt isn't until Oct 6th with my oncologist.  Let me know how your appt goes too can always dm me if not comfortable posting. But I believe knowledge is power💪🩵

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