BRCA negative but want to try Lymparz... - SHARE Ovarian Can...

SHARE Ovarian Cancer Support

2,750 members981 posts

BRCA negative but want to try Lymparza ...Olaparib

sandyhopes profile image
16 Replies

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!

Written by
sandyhopes profile image
sandyhopes
To view profiles and participate in discussions please or .
Read more about...
16 Replies
anwarulhoq profile image
anwarulhoq

You can go through these articles.

New Biologic Frontiers in Ovarian Cancer: Olaparib Update

(AJHO. 2016;12(11):14-22

).

But probably u will not get any support from AZ. Its a costly medicine. So weighbenefits/risks first. Thanks

sandyhopes profile image
sandyhopes in reply to anwarulhoq

Thanks so much. I will look at them but probably won’t help me here in BC

Zeegs profile image
Zeegs

Ask your Doctor about Niraparib instead if you are not BRCA positive. There is also a lot of patient support from this company.

Margiedolly profile image
Margiedolly

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💖

Margiedolly profile image
Margiedolly

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.

Margiedolly profile image
Margiedolly in reply to Margiedolly

I meant Zeegs. Sorry!

sandyhopes profile image
sandyhopes in reply to Margiedolly

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.

Sandy

I

Melvaeb profile image
Melvaeb in reply to sandyhopes

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.

Laurieanne profile image
Laurieanne in reply to Melvaeb

Did she get the lynparza. Ive been on it since November

sandyhopes profile image
sandyhopes in reply to sandyhopes

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 !

journal profile image
journal

Hi Sandy

I think olaparib and niraparib work about the same for brca negative people. There are other drugs approved in Canada besides carbo.

GwenHP profile image
GwenHP

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

Laurieanne profile image
Laurieanne

I am taking lynparza and brca neg. On it since last Nov. Its woth a try

corvettemama profile image
corvettemama in reply to Laurieanne

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.

Laurieanne profile image
Laurieanne in reply to corvettemama

Where do you live

Laurieanne profile image
Laurieanne in reply to corvettemama

Are you low grade

You may also like...

Stage lV brca- First recurrence

first time posting. I have stage IV serous and I am brca negative. I was diagnosed last year in...

Recurrence treated with olaparib

surgery and chemo. Now facing a recurrence. I just joined a clinical trial of olaparib to be used...

Starting olaparib parp inhibitor in month. Anyone else taking this.

Just finished with month eighth of carbo and doxil. Second cycle of chemo after coming out of...

Doxil not working, Gemzar next-and now bleeding?

been on Doxil since August 10th. Starting CA-125 was 20 then went to 12 after a month or so, then...

High CA-125, yet no symptoms

Zejula and have been on it ever since. My CA-125 has been climbing since September 2020, and is...