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Has anyone experienced Hair Loss with Zejula?

Rosellen12 profile image
11 Replies

I have been on (niraparib) Zejula for the past 3-4 month. And this last month I am losing a lot of my hair. I have had recurrence of ovarian cancer stage IIIC . Have already been thru Taxol/Carbo after surgery the 1st time, then Gemzar/Carbo after surgery the 2nd time followed with Avastin till my kidneys couldn't take that anymore. So I have already been down that road of wigs & hats, hoping not to go there again.

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Rosellen12 profile image
Rosellen12
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Cjbloomq profile image
Cjbloomq

Hi,I too have stage 3c ovarian. I went thru all of the same chemos and Avastin. I started Zujela 2 weeks ago. After last chemo,my hair started falling out,now very thin. I haven't had any issues yet with Zujela. How are you feeling ? Let me know if you have side effects with Zujela. I have been fighting for 5 years now. Good luck and keep the faith.

Rosellen12 profile image
Rosellen12 in reply toCjbloomq

Well, I only lost hair with Taxol/Carbo & did not lose hair with the last Gemzar/Carbo. I started taking Zejula 4 mo ago, started at 300 mg daily but after a week my neutrophils were too low, so after a week w/o my dose was lowered to 200 mg. Would take at night to avoid nausea but would awake a 3am & couldn't sleep, then would be very nausea in the morning. So now I take in the morning with cereal or some sort of milk & I don't get nausea. Still have some issues sleeping. I actually started alternating taking one, then two the next day on my own & after telling the Dr & asking if I could continue, he said it would be ok. I have had some joint pain off & on & pretty sure it's related. Not sure what dosage you started but it's protocol to start at the highest dose to see what you body will tolerate, then lower if unable to tolerate, which I think is Wrong. I think they should start low & work up on the dosage. I feel you body adjusts over time to the dosage because I am definitely better now then I was the 1st several weeks.

It stinks having to go thru all this but just praying it doesn't come back or there will be something better in the future. I was 1st diagnosed in Oct. 2014, so 4 years for me.

Cjbloomq profile image
Cjbloomq in reply toRosellen12

They started me on 300 mg of Zujela. So far bloodwork is good,go back next week for bloodwork. I lost my hair the first time with Carbo/Taxol. Then came back within a year,started cisplatin/gemzar lost hair,then Gemzar alone,then Abraxane/Avastin.Avastin only for a year,had high blood pressure and kidney trouble,took me off that.Went on a trial,but didn't work so back on Carbo/Gemzar.Now on Zujela.I take it at night before bed and so far no nausea.Let's hope this works for both of us for a long time.

Rosellen12 profile image
Rosellen12 in reply toCjbloomq

Good Luck, I wish you the best.Sounds you sure have had a fight. Keep up the Fight

Freedomgpho profile image
Freedomgpho

I’ve been on it daily since October. Hair is thin but I lost it all before so this is the most I’ve had in two and a half years! I have bad joint pain in ankles and right knee, diarrhea and nausea but otherwise well tolerated. Do you take biotin? It helps! Also lions mane for the neuropathy and magnesium for muscle cramps!

Rosellen12 profile image
Rosellen12 in reply toFreedomgpho

Have taken Biotin Before, Need to get back on it. Thanks

Serengeti profile image
Serengeti in reply toRosellen12

Hi Rosellen what stage were you at first diagnosis

Rosellen12 profile image
Rosellen12 in reply toSerengeti

I was first diagnosed with stage IIIC ovarian cancer, it was high serous Primary Peritoneal OC

Sophieluvs profile image
Sophieluvs in reply toRosellen12

Hi, I have the exact stage etc. as you. Original diagnosis 10-2017. I know the post is an older one-just thought I would say hi and how are you doing? Are you undergoing treatment now? Take care😊

Salavie profile image
Salavie

Yes, I have been on Zejula for 6 months, Last month severe hair loss....

blue80217 profile image
blue80217

Yes I have no hair on my legs and I can see were the hair is coming out. Anyone else having the same problem as us

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