I'm not an MD, and I'm repeating second-hand info from my MD, and I've never taken Lynparza, so take this post with many grains of salt. 🙂 I'm in the US, but my oncologist said many of the same things about Lynparza (olaparib) as you've found. He said it's approved for BRCA mutations in breast cancer, but not the ATM mutation in pancan, which I have. He said it was difficult to get insurance approval for pancan patients, although he added that he's been successful in several cases. Mostly, though, he didn't think it would be really effective in my case, that the results in pancan aren't very promising. He added that it can cause low blood counts, fatigue and diarrhea, which could actually make things worse.

In my case, my oncologist said he prefers to keep me on IV maintenance therapy, which in my case is Folfiri (Folfirinox minus the oxaliplatin), every other week, just like usual. We actually dropped the oxali after round 8, and I just completed round 14 on Tuesday (well, the 5FU pump was removed Thursday). He said research shows no survival difference, but the longer maintenance therapy continues, the longer it takes for the cancer to worsen. (That sounds like extended survival to me, but whatever.) So in his words, "practice in the real world" is to keep the patient on therapy for as long as possible as long as the patient is doing well. We decided to continue with Folfiri because I'm currently having good results with it. FYI, I don't qualify for surgery or any form of radiation due to being stage 4 and the location of my main tumor. He said that if/when Folfiri becomes less effective, we can switch regimens and/or look for a clinical trial.

This is all so confusing to me because, according to him, there is no real standard of care once 12 cycles are completed. You have to choose among options. That seems to jibe with what I see in posts here on the board. Many people talk about having chemo stopped after 12 rounds, or going from 8 rounds of chemo to radiation to surgery, etc., but those ideas weren't even on the table for me or my doctor. We are soldiering on with Folfiri! My husband and I are looking at it as taking my medicine for a chronic condition, as I would any other medication, and hopefully that works for as long as possible. I hope you find the info and approval you need to get Lynparza or whatever therapy will work best for you!

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