Lynparza/Olaparib Anyone?
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vinrph- Yes, I initially showed no genetic BRCA. But the liver biopsy showed BRCA mutation of the tumor.
I know I was de novo Stage 4. The liver and bone mets were there at initial diagnosis. But they did not do a CT or PET when they found the breast cancer at the Stage 2. We found the liver met 3 months later with an abdomen CT for something unrelated. I only got 2 treatments of the "red devil" before we stopped it and went to Stage 4 treatment of Lupron/ Ibrance/ Letrozole.
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I have the germline mutation BRCA1. Super fun to note there is no family history of cancer (my father is the carrier). Lynparza has been working well for me for a little over 6 months and MO is happy with the response. I didn't get much out of Ibrance/letrozole like some others, but I didn't completely fail it either. In fact, Im still on letrozole because I tolerate it well.
More and more I do see more ladies from around my various MBC online communities being put on a PARP if they have developed the mutation. If you can crank 9+ months out of it, why not?!
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I am BRCA2+. I'm in an FB group of people who take olaparib that has patients who do not have the mutation.
Personal update: I was doing pretty well on olaparib, but fatigue was enough in the evenings that the MO let me consider a reduction. I still work full time and have young kids, so the fatigue could have many sources! Anyway, I went down to 500mg/day in September, and I think it has definitely helped.
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Thanks for the information ladies. Interesting about non-BRCA folks taking PARP inhibitors. Of course, physicians can prescribe off label but I'm concerned about insurance coverage and wonder whether my 4 year old bone tumor tissue should be analyzed. If a liver biopsy is possible, that would be preferable.
Sondra, our family mutation "hid" behind consecutive male generations. Once identified, I dived into genealogy in order to discover where disease existed previously. A great hobby especially when staying home to avoid COVID.
With my background as a pharmacist, I remind people that drug dosage is sometimes arbitrary and often not optimal. Studies are designed to establish the maximum tolerated instead of the minimum effective. A reduction to help manage side effects is completely reasonable. Don't suffer in silence!
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vlnrph - I did that too!
In fact, I found that the paper boat passage records of my great grandfather traveling to and from WW1 and my ancestors traveling through the UK on their emigration to the US are kept in the National Archives which is down the road from where I live. I keep meaning to take an afternoon to go over there and see how the public can research further. Its somehow comforting to know the information is there.I was all worried about heart disease since that seemed to kill most people, that or a farm implement accident. But dad's family originated in central Germany and I wonder if there was some sort of Ashkenazi influence at one time. Who knows, but it is all very interesting.
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