Since my 4 th recurrence carbo helps until I go off it and then my scans not good and Ca 125 climbs high. Worried about options when I become resistant to carbo. Not sure if it is in best interest to try Lymparza for at least 3 months. Prone to bowel obstructions ... 4 th recurrence since 2013 when diagnosed. No trials here that meet my criteria. Wonder if trying Lymparza will make my ca cells more virulent. Hard to decide. My oncologist is great but doesn’t know the answer. Maybe best to try Lymparza while carbo still “ works “ while on it monthly. Anyone have success with Lymparza when BRCA negative ?
This posting is new to me and don’t want to be repetitive! Thanks for support!
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sandyhopes
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Dear Sandy, Is there any way you can get a second opinion? Swedish Cancer Care in Seattle ( even a phone consult might help) has clinical trials for Lynparza and other meds; the Marsha Rivkin Center for Ovarian Cancer Research does many. It's done through the True Family Women's Cancer Center. That's where I go. My doc is Dr. Fer (pronounced Fur) his office # is 206-860-6488. Tell them I recommended them to you. My name is Margaret East.
I pray you will find an answer somewhere! I know what it's like to be platinum resistant, and went through it for 6 years (the first two were at a different clinic, closer to home). My heart goes out to you! May God keep you close! Love, Margaret💖
Ps. I agree with Neegs! Niraparib has been very beneficial for non BRCA women. I think they use that at Swedish, too; I've met several enthusiastic women on it.
Thanks Margie and Zeegs. I would love to try the Niraparib instead of Olaparib. I can only get Olaparib (Lymparza) here in BC though.
I would have to pay thousands out of pocket and obtain in another country. Our chance for longer survival really seems to depend where one lives. Our centre and oncologists in Victoria iand great but they can only order what is ok with FDA in Canada.
I have been on and off carbo for almost 5 years. As long as I get it monthly it is keeping me stable but soon I will become resistant and then apparently the other chemo drugs don’t work as well. I don’t really know when I can say I am resistant to carbo since it only seems effective while on it. When I go off my Ca 125 starts rising in 3 months I am thinking that if we were just starting our ca journey in the next year there will be more options. Thanks for caring and advice though.
Hi Sandy - Are you BRCA +? My sister lives in BC and is trying to get on olaparib but insurance won’t cover because she is BRCA-. It will cost $9000 month and they can’t afford it. She is in a panic because her CA has recurred. New evidence shows it’s effective for BRCA- . Any suggestions we’d really appreciate.
It is Jan 2019 now and I was able to go on Olaparib and stopped taking carbo. Everything was great and even though I am BRCA neg. the Olaparib brought my ca125 to 9. I was on it for about 5 months but it caused my bone marrow to be suppressed and a bone marrow biopsy said I had myelodysplastic syndrome....(MDS) which probably will cause leukaemia in 3 years. I was quite taken aback and now my Ca is back in my liver and pancreas with new spinal fracture from my osteoporosis. My oncologist can’t offer me chemo because of my MDS which causes low platelets and hgb. I require blood transfusions every few weeks. I am going to try Letrozole which has a 3% chance of helping and has side effects such as osteoporosis which I have So wish that there were other options but doesn’t seem to be. If only my bone marrow was healthier. Good luck everyone !
There is at least a subset of BRCA negative high grade serous ovarian cancer survivors who respond to PARP inhibitors like olaparib and niraparib. While I have not been on either, I have known people who are/were on them. For some they used it like a maintenance drug to keep their disease stable or in remission for extended periods of time. Best wishes. Gwen
Hello Laurieanne. I am having difficulty finding an oncologist who will prescribe Lynparza for me. I am BRAC Negative and have had over 8 different front line chemos. I want to try Lynparza. How did you make that happen? How can I make that happen? Any information who so much be appreciated. Thank you and I so wish you the very best in controlling this cancer.
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