After all the frontline stuff that I have had over the last 2 years (chemo twice and debulking surgery) I'm now on 100mg of Zejula 100mg. It was a rocky road to start with as my oncologist started me on 300mg daily. Within a week my platelets had dropped drastically. The drug was stopped and I had 2 platelets infusions.
She phoned me today (I see her weekly or have a phone consult). All good - platelets are normal and red blood cells are too. She scared me a bit as she said that the third week is when I have to be closely monitored for the effects of the drug. Have any of you dear ladies experienced this?
Our plan is to slowly increase the dosage if all goes well.
Best wishes from the Land Downunder!
Jill
Written by
Jenjill47
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Hi JillIt's reassuring to hear that others are struggling with Zejula (Niraparib)!
I've also had debulking surgery either side of Carbo/Taxol and started 200mg Niraparib in August 21 (reduced dose due to low BMI). After 4 weeks it was reduced to 100mg as I had nausea, headaches, indigestion and severe fatigue, although my bloods were OK. Since September, the symptoms have been more intermittant, no indigestion, less nausea and my energy levels are "slowly" improving. I did have a 2 week period when they were even worse and oncologist suggested we think about a change to Rucaparib. However in the last 2 weeks I think I may have turned a corner. Feeling slightly more energised. I do still get headaches but I've been prescribed Sumatriptan which knocks them into touch. No other real symptoms, except for a slightly elevated BP.
My oncologist thinks 100mg is an acceptable dose for me (he said there's a whole range of 'financial reasons' why the drug companies recommend a higher dose to start with!)
Hope this helps and you survive week 3 without issue.
Thank you Sally! I'm so glad that you are feeling better, even though it has taken some to juggle things! I have had no side effects at all (tough old bird that I am). Well, apart from the platelets drop. In fact I have to day that I feel more energetic than I have done before starting. It could be psychological. The one day that I was feeling flat was the day after my Covid booster. Good wishes from Way South of you! 🐨🦋🐨
Thank you Sally , Your reply to Jen jill helped me too . Had a bad day yesterday with some of the side effects from Olaparib , very much like you described.
Hi Jill. I’m on Olaparib half the full dose. I had a lot of nausea, joint pain, severe fatigue the first few months ago months I was on it, but gradually they decreased. Now after 19 months fatigue is the only problem. My blood counts were also a bit wonky in the beginning but leveled off. I hope it works for you!!
Thank you Delia - that is encouraging that you have been on it for 19 months. I am fortunate that Zejula has only recently been accepted for payment by the government. (PBS). Continue on your path!
Thank you Delia for giving me a little hope. I am to start on Olaparib this January after second reoccurrence and finishing 6 sessions of Doxil Carbo. I had very low bloods and they gave me neulasta after the sessions which allowed a good recovery. Everything else with me is normal so I am hoping I can tolerate the full dose of 600 mg a day and keep the dragon at bay! Debbie
Hi Jen jill, I too , am , on Olaparib. I started on 2 150 mgs morning and night. I am only 5ft 1 tall and slim . The dosage was much too high for me and I had to go off it , I couldn't climb the stairs ,as my blood count dropped drastically and my breathing was laboured and it goes on .
I am now back on it. I was started on 1 pill everyother day , now on 5 per week .
My oncologist said that is the max I can handle .
Still wake up with headaches, some achy bones and I take omeprazole before I eat which stops an upset stomach . I also avoid anything spicy .
My blood pressure is also elevated and I take a pill for that . I just got a quote for the expense of a refill for next year $12,000 . I have applied to Astra Zeneca to get on a drug help program. The other thing we noticed was the expiration date was within a year , which is rubbish .
The drug companies certainly try and make hay while the sun shines.
Good luck , I hope I can stay on it like Delia , which is encouraging, let us know how you get on , please.
Thank you Gillian! Do you mean that the BP drug will be $12,00 or the Parp? I know that Zejula here in Australia was outrageously expensive until recently approved by our Pharmaceutical Benefits Scheme. I was fortunate enough to start on it early as my oncologist applied to the manufacturer for early approval.
If you were referring to the BP meds - perhaps there is an alternative?
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