This is all great info thank you all so much! My blood work genetic testing came back neg too, also, they did further genetic testing on cancer cells from surgery (full hysterectomy everything gone, cantaloupe tumour, and debulking) and still neg. I was able to see in my manulife site that it is not covered. I will have some time now to prepare for any other financial options, or see if they also have a compassionate pre-approval. Glad to hear purolator got there in time! And bloodwork was going to be another question from me so Thankyou for that too. Is the bloodwork checking the standard pre chemo type levels? CA125? . Fearless, Thankyou as well re working with doctor and team re funding. It had been mentioned to me at one point that funding emigrated be available and I completely forgot til you wrote it. (Also dealing right now with sudden loss of my father, estate matters... so much in my brain, and in my heart). I may have missed my early evening walk in the blue/pink/orange sunset.. but got a solid 2 hour nap. Always move forward.
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My first week taking Zejula (300mg) has gone well. Very minor side effects. No nausea or disgestive type problems. I decided to take it at 9pm every night, to specifically avoid the possibility of nausea. A few slightly elevated blood pressure readings (one while watching CNN this morning of the Whitehouse Insurrection. I should know better). The most significant side effects would be short lasting, manageable hot flashes, and some increased joint/muscle/back pain and leg weakness that keeps me from doing a normal confidently paced walk.
In anyone’s experience, is it possible I still might experience side effects, after 1 week, and the Zejula builds in my system?
I did ask about starting on 300 and they did say that it was based on weight. I do hope that 100 will be effective. Very disappointed about the reduction in dose.
Non-medical, but the squatty potty has been a saviour to me, when having GI days.
Other than this, experiencing dry mouth, hot flashes are intensifying, joint pain, and minor fatigue, Has anyone else had the nosebleeds? Even if not, looking forward to hearing your updates and hope all is well😀
update… my nosebleeds had nothing to do with Zejula, and all the other side effects pretty much are gone. I have 2 notifications set as gentle reminder to take it at 8pm.
I hope this helps in some way,
Wishing you all the best. :Please continue to reach out. Our community is here to help support you through every step of your journey and wherever we can.
I hope you are doing well.
I was wondering, are you sure Manulife doesn't cover Zejula now?
Are you paying by yourself to buy Zejula?
In advance I appreciate your help.
As the site Moderator I noticed you did not complete a profile or introduce yourself so could I ask you to do so in reply to this comment.. Just some simple information on your status....do you have OVC yourself or are you a caregiver for someone else...when was the diagnosis and what treatment has been given or is expected? Just enough information that we know a bit more about you or who you're representing for context when responding to any of your questions, particularly the one you have asked about Zejula funding.
I'll look forward to hearing more from you....best regards from all of us,
No experience with Zejula myself but plenty of discussions on the topic over the past year or so. If you haven't already, do try the search bar on the upper right of your screen and type in Zejula or Niraparib and that will pull up whatever exists in our archives that might be helpful.
Though I do understand there can be some anxiety when asked to postpone a treatment or lower a dose. It's happened to me on occasion and that fear those instances can set back recovery are hard to put aside, no matter how you're assured it won't. It's at those times you really have to draw on your trust in your medical support.
I am copying Tracy Kolwich @TracyOCC our Regional Director at OCC who I know spent some time this past year collecting the experiences of our community on Zejula. She might be able to add some insight for you.
But do remember as you read the stories of others that we all react and respond differently to treatment. For some solutions to issues can be dose adjustments, for other issues rests and restarts, and for others complimentary meds to help balance things out. Your cancer care team will look at all options to ensure you are receiving the best treatment possible.
Good luck. Keep us posted on your progress and do reach out any time we can be of help or support. We're all rooting for your success.