Hi I am new on this site. I was originally diagnosed with Clear Cell Ovarian cancer grade 1c in September 2018 with an 80% recovery rate. I had a full hysterectomy and chemo and I was clear last year. Unfortunately it has now returned and I have been informed it is terminal. I am in the process of going on the PEACOCC trial at UCL which will hopefully lengthen my life.
At the moment I am actually quite well just very tired. Has anyone any experience of this trial? If it doesn't it is more chemo and I'm pretty much snookered.
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susras
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Hi Susras. I'm sorry you are having to face this diagnosis. I've not experienced this trial but understand it is an immunotherapy drug. I do hope it proves helpful to you and that someone comes along who can offer advice. Also just wanted to say we are all here for you. Big gentle hugs. Kathy xx
lesleysage is a member of this forum and has posted about the PEACOCC trial, as she is a patient rep for it. It might be worth looking at Lesley's posts about this for further information.
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Hi Susras, I’m so sorry to hear that you’re going through such a horrible time. Never give up hope, the trial meds may be very successful. I know a local lady who was given 6 months for stage 4 breast cancer and she’s still here after 5 years and doing fine! ( She too went on a trial, which worked).
So sorry to read this, especially given you were diagnosed as stage 1c......me too. Have you been brca tested? I understand that the latest immunotherapy treatment is proving very successful if you have the faulty brca gene. I have been tested and don’t. It’s hard not to think the worst and they should never say it’s “terminal”. Don’t ever give up. My husband was discharged last Monday from the cancer clinic, he was diagnosed in 2008 with stage 4 bowel/liver/ lung cancer. After three years of constant surgery/ chemo they were giving up on him. I found out about a trial, got him on it. That was in 2011, no recurrence since and now discharged. Good luck and much love. x
Thanks. I have been tested but none has confirmed I have this gene so I don't think I do. I'm hoping this trial or another one will work and keep me going. I don't even feel I'll at the moment...
If it doesn’t work there is also the Patriot trial which I am on. It is run at the UCLH Research Facility. I have stage 3c clear cell and chemo didn’t work at all for me. I would have bern put on the peacocc trial but it wasn’t open at the time. I started the Patriot in December 2017 and the tumours started to shrink immediately and have reduced very slowly over the last 2 years. The last scan showed a very small increase so a bit nervous about the next one- however I have maintained a partial response so far. The drug is an ATR inhibitor called AZD 6738 and the doctors don’t yet know why it had worked for me for so long.
That's interesting. I am going for a second opinion as well. Let me know how you get on. I'm still waiting to start as I need to have a biopsy and scans still. X
Ketruda is the overarching name for pembrolizumab which is the drug being used on the Peacocc trial I'm trying for. Thanks all this info is a real help.
I'm clear cell too and there are a few of us on here, some of whom are on various trials including PEAOCOCC. I've chatted to some of the ladies on the trial and there have been mixed results. It seems to either work really well or make no difference.
I'm in the same position as you with a terminal recurrence. Clear cell is remarkably resilient to chemo unfortunately so hope does lie in these trials working.
My onc has gone the route of chemo again with Avastin to stem the growth of tumours and then trials if that doesn't work. We shall see.
If you click on my profile and see my one and only post you will see the chat concerning trials and really useful information regrading PEAOCOCC too. The replies were really useful and my help with your question too.
Thanks. I think I have replied to a message out of sequence without looking at the thread. Duh. As I am very early stage 4 I'm hoping I will have a quick indication on whether it works or not so I can switch to another treatment if necessary fairly quickly . It's great to find people with the same cancer to talk to.
I too have Clear Cell OV and was Stage 4 at diagnosis in March 2014.
My prognosis was pretty bad right from the offset and it has always been incurable. But I am still here.
Although chemo is not as effective for our sort of OV I have had five reoccurrences which were treated with courses of palliative chemo and these have successfully kept me going.
I am about to start my 6th course of chemo tomorrow and have also been referred to the PEACOCC Trial.
Please do not right off chemo or yourself because you have clear cell. You may not be cured but you can still live well.
Thank you so much for this message. That has really helped. I am reconciled to the fact I cant really be cured but just want to live well for as long as possible. How are you coping with the constant chemo? It started to wipe me out last year. Are you going for the trial?
Sorry I thought I had already replied but it seems to have disappeared! Goodness knows what I did with it.
Chemo is not my favourite thing but luckily I do get periods of respite between courses when I feel relatively well. These are the times I try to focus on and I see the chemo as just something that must be done to get to these times. In some ways the chemo gets easier as it becomes more familiar so less scary. Also I know I have done it before so know I can do it again.
Fatigue and low energy are my big problems usually so I try to prioritize what I want and need to do and delegate or forget the rest.
I have been blessed with a wonderful family and a fabulous Palliative Clinical Psychologist, without whom I definitely would not be able to cope.
Best wishes
Juliax
PS Not sure about the trial at the minute but would not be able to proceed until I have finished my chemo anyway. So will see then.
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