Hi
I just got off the phone from my oncologist and she told me I am BRAC negative & parp inhibitors won't help me, have any of you lovely ladies been told this?
Or any of you BRAC negative on parps?
I was so hoping that I could start these soon.
Thank you. X
Hi Pixiepurple
The NHS is funding non BRCA women to have Parp inhibitors, given that they are not cheap, this suggests that there is evidence that they can have an effect. Not sure what is available in Ireland.
Did she say non BRCA or not HRD positive? As I understand it HRD status might have more bearing on whether you might respond.
Perhaps this is a good time to ask for a second opinion? xx
Thank you Lyndy I think def a good time to get a 2nd opinion for sure. Thank you for the response.
at the asco 2023 meeting there was a presentation demonstrating the efficacy of parp therapies even without braca and hrd presence.
cancer.net/blog/2023-06/asc...
Thank you will have a look this evening.
I have been on Niraparib for a year and a half. It definitely is working somewhat for me.. I have now started on a trial adding avastin to it so fingers crossed. I am BRAC negative
Thank you I will def have a lot of questions in my next phone call.
I do not have the BRAC gene, when tested and it required more investigation it turned out I have BRIP 1 inherited from my dad. I was put on Niraparib, took it for a year but sadly it stopped working for me. I would ask your oncologist why you can't have it.
Thank you will do. What are you taking now?
Hi, because the disease has progressed to my liver and spleen (already in peritoneum when diagnosed) they put me back on carbo/placitaxel. Finished six in October and currently on a break. Scan on 14th Feb. In Jan my oncologist talked about me having weekly placitaxel. Three weeks then a week off. So that's were I am ....xxxx
Im BRACA negative and HRD positive ive been on Lynparza for 2 years been working for me mininmal side effects much better than chemo. Xx
That is really good to know. Thank you.
Hrd positive brca negative but I'm on parps. Did you get the hrd test of you tumour? Also agree with lyndy 2nd opinion may help. X
I have to look into the HRD test not 100% sure.
I am BRCA negative but was given the parp inhibitor Niraparib over 3 years ago. I was told that it had just been made available to BRCA negative ladies under licence, whatever that means! I hope you manage to get this treatment or something similar. Good luck xx
Hi Pixiepurple
I am BRCA negative, and stage 4b. I have been on Niraparib for a year following 2nd course of chemotherapy for 1st recurrence. At my last scan there was a slight increase in the size of one tumour (2mm), but my oncologist said that as CA125 steady and such a small increase, he feels that the Niraparib is working. I find it much easier, with fewer adverse side effects than the chemotherapy, or the Avastin which I had after my first chemo. There are lots of ladies on here that are BRCA negative, but on PARP inhibitors, but I think you have to satisfy quite stringent requirements to qualify. One of which is the time that has elapsed since successful chemotherapy, so you would need to start them sooner rather than later. It might be a good idea to ask if there’s a reason other than your BRCA status, for denying them, and if there isn’t, ask for an urgent referral for a second opinion. Best of luck.
Thank you. It is so annoying. My last chemo was in Oct. So hopefully not too late.
i took OLAPARIB parb for 2 years after frontline chemo. Im BRCA negative but my tumour tested positive making me BRCA somatic and I was then given the parb. But I had to chase down the laboratory for the result as the oncologist said I was BRCA negative and he hadn’t these results. Good luck, ask about tumour testing.
Will do thank you.
Hi Pixiepurple,
I am in Ireland also and Niraparib is available for first line but discontinued here for second line patients, I was never on it. I am on Avastin presently which has worked well for me in the past, I got 2 years in remission with it before the beast came back but only because the Avastin raised my blood pressure and affected kidneys eventually.🙁 Best of luck with your treatment 🌷
Mags
Thanks Mags. What are you on now? I started Avastin the week before last. Fingers crossed for us both
I’m on Avastin now over a year and fingers crossed hopefully I can stay on it longer, affecting blood pressure a lot at the moment…Best of luck on Avastin, it always works well for me….I have never been on a parp 🌷
Thanks Mags. I do hope it works also.
hi
I’m BRCA negative but I have somatic (within tumour) HRD homologous recombination deficiency which means PARPs will work potentially.
Have you had an HRD test on your tumours I would ask for one as guidance allows you to be prescribed PARPs if your cancer is HRD
I have to look into this thank you
good morning
That’s simply not true, I am BRCA Neg and have been on Niraparib (PARP) since June 2018. I haven’t had a recurrence since.
Is there any other reason a Parp may not work for you ?
If there isn’t you should ask for another appointment to discuss the Oncologists reasoning.
Good luck
Kay
Thanks Kay. I'm really annoyed will be on the phone tom & try & get questions answered
I am also BRCA negative. When I started this journey 5 1/2 years ago PARP inhibitors were not approved ( USA) for those who were negative. After my first reoccurrence, there was a change in the research, and they did indeed find that PARPs were effective. I would seek out a second opinion. Good luck..
Thank you will do best of luck.
like others have said the case selection can be based on science and economics.
The inhibition -blocking of the PARP DNA repair mechanism is most efficient if you don’t have one of the other repair mechanisms (BRCA or HRD) too.
Some PARPs are being offered in cases of recurrence so there may be some benefit.
Were you offered bevacizumab infusions as a maintenance option?
Hi Motiva yes I started Avastin the week before last
Hi, I was on Parp for 6 months after chemo.
I am negative for BRCA and HRD also.
I got a pleural infusion in my lung 9 months after chemo and oncologist told me to stop PAPP immediately because did not help me. Since October I am not in any medication. Oncologist waiting to see increased CA 125 / two weeks ago was 50/ to started chemo again. He told me that chemo will not help me but only stop cancers cells to grow temporarily and that I have bad prognosis for life expectancy. I am now stage 4B with metastasis in long- pleural infusion and not on any medication since October.
A year ago I have very successful debulcing surgery in Europe and after chemo now- plural infusion and no medication…
I don’t know what to do. I am in Canada.
Hi Green999,
I am so sorry to read this. Have you asked about any trials that you might be able to start. There must be something they can start you on. Again like the answers for me please get a 2nd opinion.
Best wishes
I am BRCA negative, but somatic testing proved that my *tumors* were BRCA positive, therefore was put on PARPs because it would be as effective as it was for a BRCA pos person.
Thank you Flower Rose. Will try get a 2nd opinion
Hi Pixiepurple,
I am also in Ireland, in Galway. I was on Niraparib for seventeen months after my first recurrence. Unfortunately it stopped working for me. I too am Barca negative. I’m waiting to find out my HRD status, genetic profiling is now available here in Ireland . I would definitely seek a second opinion, I did and only for it I wouldn’t be here now!.
I went to see Dr k Cadoo in St James , Dublin. She was really good.
If you want to pm me that’s fine I can give you more details. Best of luck .
Ann.
Thanks Ann I really appreciate it. I have sent you a quick message.
Hi Pixiepurple,
I am BRCA negative as well and diagnosed with ovarian cancer-stage 3C in November 2019. Chemo and surgery followed and I’ve just finished and three year period on Niraparib/Zejula. Four years in remission so far. I would definitely advise a second opinion.
Thanks Sadie def be looking for a second opinion
Just want to let everyone know I have a friend looking into this for me at a different hospital & my sister in law is also looking into this for me in Germany. Thank you all for taking the time to respond it means the world to me. Xx
Hi Pixiepurple, sorry I am 5 days late replying but only read your post now. I am a patient in a Dublin hospital. I am Brca 1 & 2 negative, first chemo 2019, on Avastin till recurrence Sept 2020 , chemo again 2021. Stayed on Gemcitabine till Nov 2022 & started on Niraparib which is for Brca negative patients Jan 2023 ,still on it so the information your oncologist has given you is untrue . It's very strange that she thinks it won't work for you & doesn't seem interested in trying you on it. Remember it's your life she is talking about so you have a lot of questions for her & if she doesn't budge you need to look elsewhere. Good luck going forward & I hope you get the chance to try Niraparib, it works & you prove her wrong X
Hi Tulips66,
Thank you so much for the response I am back up on Tuesday for the Avastin & will gather all the information I need. From all the amazing responses I have received I have the names of 2 doctors I can go to see if she doesn't explain why it won't work for me. It is very frustrating esp reading all the responses that it does work. Thanks again . And best wishes to you with your treatment.
Take care
Good luck & hopefully you get sorted 🤞
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