I was diagnosed in Dec 2017, Stage 3C ovarian. Had 11hr. debulking (9cm tumour on my uterus) followed by chemo and was NED by end of May 2018. CA125 was at 7 when I completed chemo. Prognosis looked very good. I had a reversal of my ileostomy in July, port removed and I was hopeful to not reoccur. Unfortunately, in Nov of 2018, my CA125 began to climb rapidly and a CT scan showed a new 4.2cm tumour on my liver. Because I was still chemo sensitive (under 6 months, I was 7 months) I began chemo again Jan 2019. Last month CT showed tumour down to .05cm and considered stable. I am frustrated by the reactive process of just monitoring again to reoccur, knowing the window between reoccurrences typically gets smaller. If I reoccur before 6 months, chemo would not be an option. Wanting to be more proactive about this, I inquired about a 'maintenance' option. I am NOT BRCA1 or 2 positive but did test positive for PALB2 (Partner and Localizer of BRCA2). Currently Lynparza is NOT covered for my mutation although my doctor feels I may benefit from this drug. My goal is to extend my progression-free survival. OHIP (I'm in Ontario) would NOT cover me for this drug. I do not qualify at this time for any trials and I do not have ANY private medical coverage available to me.I decide to proceed paying out of pocket. I started Lynparza this week and am paying over $4300/month for it. I am very fortunate that I can afford this and I am hopeful that it works and eventually there will be coverage for this for non BRCA1 and 2 patients. I fought hard to get this drug discounted and this cost is AFTER the discount from AstraZeneca. I was initially told it would cost $9000 /month.
So my question for any of you is: Has anyone here taken this drug who is NOT BRCA 1 or 2 positive? If so, any success with this drug? Obviously, I will remain on it as long as it works and I am financially able to do so. I would love to hear from anyone who has experience with this drug outside of BRCA 1 or 2. Naturally, I don't want to spend thousands and thousands of dollars only to reoccur shortly but am willing to do whatever is available to me to prolong living with this disease. Thanks