ZEJULA PROS AND CONS: Hello, I was... - SHARE Ovarian Can...

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ZEJULA PROS AND CONS

Mommashark6 profile image
5 Replies

Hello, I was diagnosed with stage 3 c ovarian cancer had debulking surgery complete hysterectomy and bowel resection on 11/29/22 did 6 rounds of carbo/paxtel? i think thts how u spell it but im now in remission but also have the brca 1 mutation gene and did lynparza for 3 weeks and was feeling bad brain fog and started loosing my eyebrows which just grew back after chemo and eyes very dry and blurred vision now that ive been on a break everything is so much better, but now my onc. doctor want to start zejula which ive read on here causes hairloss i dont want tht , i really struggled with depression after losing all my hair. it triggers me anyone one on here doing ok without taking it tht has the brca gene? ive done some research found some suplements thru melaniawellness want to order but want to do what works i cant go thru chemo again and dnt want too want to avoid and also who here has had a preventative double mastectomy and reconstruction done , im so at lose for all this but i have 3 littles at home i want to be around to raise please all the info Thank you

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Mommashark6
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patricia54053 profile image
patricia54053

I've been on niraparib for 2 years, it's also called zejula. No hair loss at all

Ruebacelle profile image
Ruebacelle

Well I understand but the sick truth is this is a longterm illness. It's your decision if you want to continue or not in my case diagnosed in 2014 since have had several operations and over 120 or so infusions of chemo plus a couple of months on an oral drug. Hair loss can be mitigated if you wear an ice Helmut during infusion. A lot of women wear great looking Wigs. A support staff is crucial for things like ancillary support...massages foot care etc.

delia2 profile image
delia2

I sympathize with how you feel. You are very young and should have a long life ahead of you. If I were you I would go back on Olaparib at a very reduced dose. I started on 400 mg and went to 300 after a year. It saved my life. I had a recurrence 8 months after frontline and the chemo worked only partially. Olaparib got rid of the cancer and I’ve been ned for 3.5 years. Also it does not make you lose your hair. The side effects do get better after the first several months but don’t completely go away.

Tvam profile image
Tvam

I'm sorry that you have to go through all this, I was diagnosed aged 48yrs in 2015, had the surgery and the carbo/taxol chemo it's absolutely horrible, my children were aged 13 and 16 at time. Unfortunately I had a recurrence in 2017 more surgery (many complications and it didn't look good for a while) more chemo, didn't lose my hair 2nd time around but twas still horrible. I'm now on letrozole for maintenance, 1 tablet daily. Doing really well all my scans to date show no active disease and my oncologist has decided that once a year is sufficient for future scans. You have to do what's right for you always but if the time comes that I have another recurrence (I pray it won't 🙏) would I go through it all again? Yes 100% , I've lived to see my son graduate from University, my daughter is in her final year so please God I'll see her graduate too, I'm getting greedy now and I want to see them grow further and may meet my grandchildren. I've learnt to put my faith in the medical profession and go with them, yes the side effects are horrendous but they pass in time, hope it all works out for you

Pianoplayer731021 profile image
Pianoplayer731021

Hi, I was on Zejula for three years and stopped this in July of this year. I have stayed NED and only noticed that my hair just thinned out a little. I never lost it like what happened when I had the carbo/ taxol combo. My Dr. stopped this med so I could build my blood counts up. I feel fine so far and hoping that I don’t get a recurrence. Sending my best wishes to you that your treatment will give you good results. I am almost 77, so that could also be a factor with some thinning hair. 😊

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