clear cell ovarian cancer

[trich2]

any 10 year survivors

[Neona]

Just got to 2 years thanks to a great surgeon and a clinical trial.

[Jingyu in reply to Neona]

which clinical trial are you in?

[Neona in reply to Jingyu]

I am on the Patriot trial. It is a phase one trial for the drug AZD 6738 and it is an ATR inhibitor. I have to go fortnightly to the UCLH Research Facility although it is probably also run at the Royal Marsden and maybe other places. The trial is for solid tumours and not specifically for ovarian cancer. However they were pleased to have someone with clear cell ovarian cancer. I started just before Christmas and have been stable with a small amount of shrinkage. Don't know my scan results from yesterday yet though.

[Jingyu in reply to Neona]

Thanks for the information. Did you get you tumor tested for mutation ?do you have ATR related mutation?

Finger crossed for your scan.

[Neona in reply to Jingyu]

I really don't know. A sample of my tumour was requested from Truro by the trial team and analysed in relation to the trial- I don't know what they were looking for or what they found.

[Jingyu in reply to Neona]

thanks a loy, i hope the trial works for you! Take carr

[lesleysage]

Seven years and four months; first surgery & chemo May 2011 and recurrence followed by second operation and dose-dense chemo between Feb and September 2013. NED since and definitely due to brilliant surgery.

[Neona in reply to lesleysage]

Hi Lesley- are you platinum sensitive? I have been watching for the peacocc trial but it still doesn't seem to have started.

[lesleysage in reply to Neona]

Yes, I had almost 12 months after carbo/taxol finished before my CA125 started to rise more quickly and 15months before the tumours were visible on the CT scan.

PEACOCC: I have a Patient Rep meeting on Friday October 5th and PEACOCC is on the agenda. However, because of this from you, I've emailed the co-ordinator to ask if you can contact her direct, so I'll let you know her reply. L.esley

[Neona in reply to lesleysage]

Thanks- that's great.

[lesleysage in reply to Neona]

Hi Neona,

Heard back from the PEACOCC Trial co-ordinator earlier today saying the timetable looks as if they will recruit patients in Dec this year or January 2019. However, she says you are welcome to email her to find out more. She is Laura Farrelly and her address is [e-mail]

From my reading, some months ago now, of the patient information sheets, my layman's view is that it is a good idea to email her; she will be able to check 'eligibility criteria' for you, especially as you are already on a trial. As your current trial is also UCLH Laura may well know the detail of that one too.

Please do let me know how things progress, Neona and good luck.

Warm wishes, Lesley

[Neona in reply to lesleysage]

Thanks so much for this. The Patriot trial has been going well in that I am still stable although I don't know my latest scan results yet. However I'm aware that this won't ladt forever so it's good to be prepared for the next step.

[Di16]

Not clear cell, but I've survived 10 years gct ovarian cancer. Di

[devotedtolife55]

Nearly 6 years (stage 1c) 6 x carboplatin and, so far, no recurrence and 18 years, currently stable for my original (different) cancer. Still being checked in two different oncology clinics which happen to be on the same day. Very pleased with my surgeons at Addenbrookes, Cambridge - hope I don't have to see them again!

[Flamingobeef18]

Four and a half years with Clear Cell stage 4 so far but planning on many more unless that sneaking runaway bus gets me first!

Lots of love Juliax

PS Sod bloody statistics

[Jingyu in reply to Flamingobeef18]

how inspiring! you are the only stage 4 clear cell I met that is NED for more than 3 years! stay in a very very very long remission please!

[Flamingobeef18 in reply to Jingyu]

Sorry to have to tell you this but I thought I should for the sake of clarity.

I was diagnosed with Stage 4 Clear Cell back in March 2014 and am definitely surviving but I have never got to the point of being NED. I was told from the beginning that it was not curable so true remission is not on the cards.

However palliative chemo has kept it at bay and I have just started my 3rd line to give it another bashing. I already have plans for 2020 so I plan to be around for a good while yet. As my husband would say I have a good few more Xmas Turkeys in me yet!

All the very best

Juliax

[Jingyu in reply to Flamingobeef18]

you are a fighter and keep being well!