Good afternoon my Teal Sister Warriors!
I'm posting this as a response to Niraparib (Zejula) not being available for those with the BRACA 1 or BRACA 2 genetic mutation.
I live in Alberta and have been on Niraparib for over 2 years now as maintenance treatment for HGSOC Stage 3B. I have no genetic mutations (BRACA 1 & 2 negative) and I am also HRD negative.
The PARP Inhibitor is fully paid for by the Province, and is the only PARP that is prescribed for BRACA1 or 2 negative patients where I live. I believe that is the case in the rest of Canada, although some doctors may have different protocols and/or opinions.
Niraparib has been a game changer for me. Following my October 2022 surgery, I was NED. Before I started chemo in January 2023, I was also NED, and after I finished chemo at the end of April 2023, I was NED and have remained NED after being on Niraparib since June 2023, My last CT was May 2025 and I am still NED.
My bloodwork has been excellent on this PARP; my platelets have never dropped and there has never been any concern. They call me "Super Woman" or "Rock Star" at the Cancer Institute! I am monitored monthly with labs, including CA125 and 2 other tumour markers, I see the local gynecologist every 6 months, and have a CT every 6 months. I also speak with a Cancer Nurse every 3 months.
I take 200mg daily, at bedtime. I have been fortunate to get only a few side effects, the biggest being fatigue. Not all side effects occur at once; currently I have a very itchy scalp, which could be a side effect of another medication. I had mild mouth sores last year that went away with the help of cortisone shots. I have occasional gut issues which are manageable.
There are a lot of horror stories out there about PARPs in general. There was a lot of hoopla a few years ago about Niraparib but that was reversed or faded into the background. Many women simply can't tolerate the drug at all, this affects up to 30%. Some have a recurrence, some need a dose reduction (300mg per day is too much for most of us!!), some have remained NED for a number of years.
For me, I believe that the excellent care I've received, including being on Niraparib for 2 years (1 more year to go) has kept the cancer away. It is working for me, and certainly there are stats that indicate a longer PFS on a PARP vs. not being on a PARP.
We are all in the same boat but with different oars. We share so many similarities with this #@*&% cancer, but we all react differently at times throughout the journey. "To Be Or Not To Be" on a PARP is very much an individual choice, and if this something you feel would be a benefit, push for it. I know finances can enter into the picture especially in the US. Have your Doctor or Cancer Centre push the manufacturer for funding. The Ovarian Cancer Research Alliance (OCRA) often helps patients secure funding. They are US-based, and the leading ovarian cancer research organization in the world! I belong to one of their weekly support groups (Canadians are welcome to join) and it has been a hige blessing in my life.
I'll get off my Niraparib Soap Box now, LOL! I just wanted to weigh in with my experience on this medication. I have believed since my June 2022 diagnosis that I would be part of the the "survivor statistics" even before I heard of PARP Inhibitors. I believe this to this day.
Sending love, courage, and a fighting spirit to all <3
Judith