English Community

Hello 

I have been searching the site looking for Zejula information.  Most of what I see is older and I'm not sure how much has changed.  If my doctor can get me funding, I will start taking Zejula.  I got some great information from @judith - thank you very much - but I didn't ask about side effects.  I've read high  blood pressure is a common one.  I have borderline high BP which I take a prescription diuretic for - this has been keeping it under control.  Another common side effect seems to be constant tiredness.  I'm wondering if these go away or lessen.  I am also wondering about other side effects that people have experienced and any other information you are  able to share 
I know I have limited time to start taking it - my last chemo was August 27. My follow up appointment with my oncologist is October 6 
i am also looking for information on funding - I've read that the province will pay for it for 65 YO and older - I am not quite there yet.  I have very limited benefits that will not cover this. 
I live in Ontario.  I am BRCA negative but , I just learned , I am HRD positive.  
I so confused - I'm obsessed with googling information which has not helped me as there is so much conflicting info out there I don't know what to believe   I would be grateful for any information or guidance 

Have as good a day as possible everyone and thank you for taking the time to read my post. 

Hi @pepperbee ... while I can't speak to Zejula I can say from my Lynparza (Olaparib) experience that my gyn/oncologist helped with completion and submission of required documentation to get government support for funding (which helped connect me to the Trillium program). I to am under 65. So please ask our medical team about this as perhaps it's a similar process for Zejula. Regardless they should know since this shouldn't be there first time prescribing it. 

As well, AstraZeneca who are the makers of Lynparza provide $ support toward the cost. Again, this was all managed via my medical team so please ask as well about support by the drug maker.

As an aside, if you are treated out of PMH in Toronto they have a Medical Reimbursement Team who are amazing at helping you navigate your way through all of this. I was connected to them as a PMH patient, via my medical team.

Also, be careful with "Dr. Google". It can take you down rabbit holes you do not want to get caught in.

I hope that helps.

#Treatmentandsideeffects

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I am HRD negative, so would  no longer be a candidate for naraparib (zejula), but I was able to go on it for a year (I knew I wasn't BRCA but wasn't sure of HRD status at the beginning).  I had high blood pressure and constipation as a more constant side effect.  At the beginning I was on a higher dose and my hemoglobin and platelets fell.  (therefore, out of breath, easier bruising..).  I went off it until they came back up, tried again and I think they fell again..and so the dose was adjusted.  I was then good for about a year, and was able to control my constipation somewhat.  I had to go off it for surgery of a hernia and when I went back on it, my hemoglobin/platelets fell.  At this point I had to make a decision on whether to go on it again, when I wasn't really a candidate who could be assured of benefit from it.  So I stopped.  That was about a year ago.  I am now in chemo for my first recurrence.  I was monitored fairly closely while on the drug.  After that i was monitored once/month and then once every three months for CA 125.  No scans unless I had issues...Always able to call into the cancer center and leave message for oncologist or his/her nurse.

Thank you @brendalee for your reply.  I'm sad to hear about your recurrence- I wish you well - I will be thinking of you.  Thank for the information on side effects , this will help me be prepared if I end up taking Zejula 

Wishing you the very best 

@brendalee thank you for sharing your story. I am sorry to hear about your recurrence. I hope you are doing well during your chemo.