low grade serous oc and parps

[thomas62]

Does anybody know if low graders, non BRACa (germline) are eligible for Parps.Thanks all. Gwen Xx

[Hidden]

I thought chemo treatment was the same for high/low grade.? Niraparib is available as parb for non BRAC after 1st recurrence. Sure someone who is more knowledgeable will be along soon.

[thomas62 in reply to Hidden]

Thanks lyn1987. I would be interested to know if low graders were eligible for a parp (as well as being a non BRACA)!!! Best wishes. Gwen Xx

[Artgreen]

I guess it depends where you are. In the U.K. under the NHS they don’t do genetic testing unless you have an immediate family member with breast, prostate or ovarian cancers. So probably not an option currently.

[busbee3 in reply to Artgreen]

I would recommend having tumour profiling done if at all possible. I was fortunate to have mine done as part of a trial, however, I know others outside of the US that used Foundation One in the US. It's expensive if your insurance doesn't cover it, but knowing if you have any mutations open up treatment options such as PARP's and other drugs. Low Grade tends to have a low mutation burden, but still, something could show up.

[thomas62 in reply to busbee3]

Hi busbee3, Yes I would like to have tumour profiling done and yes I know it's expensive - but what cost one's life. Best wishes. Gwen Xx

[Eriksendi in reply to Artgreen]

I have no family members with breast prostrate or ovarian cancer and was given genetic testing. I am in the uk and under the NHS.

[thomas62 in reply to Eriksendi]

Hi Eriksendi, I have had genetic testing and am BRACA negative which is usually the way with low grade ladies. I am interested in tumour profiling now. Best wishes. Gwen Xx

[Artgreen in reply to Eriksendi]

That is interesting so it looks like the postcode lottery again. I know they don’t do it here in swindon unless you can afford to pay privately. Do you know if it has to be done within a specific time? I don’t have an idea how much it costs but will talk to my GP as the hospital say that is the route.

[thomas62 in reply to Artgreen]

Hi Artgreen, The geneticist only agreed to do the BRACA test I told her that I thought there was a Jewish link in the family as there is a genetic link to BRACA higher an the norm. Best wishes. Gwen Xx

[thomas62 in reply to Artgreen]

Hi Artgreen, Thanks for your reply. I am low grade BRACA negative. Would like to have tumour profiling. Gwen Xx

[Levanah]

Niraparib was something I was interested in but when I spoke to Prof Gourley about it he said he didn’t think it would help me.

He’s going to be starting a clinical trial but not sure when yet , for recurrent Low Graders. As the LOGS trial is to be reported on in September I’m thinking his plan is to use MEKi Trametanib which he has indicated in emails has had a great response. As for PARPi, it’s very much a post code lottery in the uk to be honest. Same as Bevacicimab is 😢 xx

[Artgreen in reply to Levanah]

Thank you for this. What a maze! Xx

[thomas62]

Hi Levanah, Thanks for this post - I am thinking of going to see Prof. G. - also thanks for the info.on his new clinical trial. Best wishes. Gwen Xx

[thomas62]

Hi Levanah,

Thanks for your message.Will keep watch for this trial. I was thinking of contacting Prof.Gourley myself, he being the expert on low grade. Best wishes. Gwen Xx

[triplets]

I had my 6 monthly check up last week, all good. But out of the blue my oncologist said he would like me to be tested for BRCA at Guys in London. He said it would be a good idea as if my cancer came back the new parp inhibitors show that those of us carrying the BRCA 1 or 2 are responding well in trials to parp treatment. I am three years from diagnosis, stage 1c2 with no recurrence as yet, thank God. Good luck. x

[Bliney]

At a meeting I bumped into a lady who is also a low grader and she was doing well on Letrozole for quite a while. Then she switched to a MEK inhibitor which I think is part of the LOGS trial. Worth asking about these two options.

[CharlotteSo_UK in reply to Bliney]

Sounds like my mums history! You didn’t meet at the recent ovacome event in London did you?

[Maus123]

Hi Gwen. I've done the same thing I bet you did.. I googled the world out of the internet for possible information, and pretty much came up with nothing. Looks like PARP availability might be more related to BRCA mutations, and more relevant for high grade but nobody really knows because there isn't enough data on PARPs for low graders?

Can't hurt to ask about it though. Let us know if you can get your hands on those PARPs. Really hope you get a chance to try them. Xx. Maus

[thomas62 in reply to Maus123]

Hi Maus123, Thanks for your message. Have been incognito abroad for last 2 weeks but back now! Gwen Xx

[busbee3]

From what I see on-line, PARPS are mostly used for high grade, carboplatin-sensitive, BRCA1/2 positive people. However, research has shown that they work on some BRCA negative people, but they're not sure why. I found very little on PARPS and low grade. I am BRIP1 positive which is on the BRCA DNA line, which might indicate PARPS would work for me. However, I'm carboplatin resistant, as are many low graders. My oncologist is going to look into it. I'll let everyone know what I find out.

[thomas62]

Hi busbee3, Yes please let us know what your oncologist report re. parps and low graders. Best wishes. Gwen Xx

[busbee3]

I had a brief conversation about PARPS with my oncologist yesterday. She feels that because I have the BRIP1 mutation, it's an option for me to try at some point. The discussion was more about Avastin which she is suggesting I add to weekly taxol now. Because I have some bowel involvement and Avastin has a risk for bowel perforation, she is suggesting a dosage of 7.5 mg per body weight, every 21 days. The risk for bowel perforation is greatest in the first 50 days of treatment with Avastin. The lower dose and longer interval should mitigate the risk of perforation. A 2018 European study of 400 OC patients suggests that the 7.5 mg dosage is statistically as effective as the standard 15 mg dosage, so I'm pleased she's going with the lower dosage. I also read a 2014 LGSC study that also shows similar responses from the 15 and 7.5 dosages. I thought other low graders would want to hear her treatment plan and reasoning behind it.

[thomas62]

Hi busbee3, Thanks for this. Gwen Xx