ONX 0801

[111173]

I would be grateful if any of the ladies who went on this trial could let us know how they are now.

I am semi-stable at the moment 3 1/2 yrs down the line with stage 4 PPC after 3 lines chemo and debulking surgery. CA 125 rising slowly to present level of 335. Another scan in 3 months and then what? I asked my oncologist to look into trial for ONX 0801 and he said I may be eligible

Do those of you that have had this drug think it's worth it and how long have the benefits lasted?

Lynne

[Katmal-UK]

Hi Lynne I believe this is the trial which was in the news very recently. There were only a small number of ladies (15 I believe) who took part. Approx 50% had really good results. It would be worth you googling ONC 0801 (I don't usually advocate google for OC but this is different!) as there are several interesting articles/news items. Hopefully your onc will be able to find some information for you. It will be interesting to see if any ladies on this forum have been on the trial. Good luck with your research. Do let us know how you get on. Best wishes. Kathy xxx

[111173 in reply to Katmal-UK]

Thanks Kathy - I have already 'Googled' it and the trial is open again until September.

Lynne

[Katmal-UK in reply to 111173]

Oh that's great news! Let us know if you do manage to get on the trial. I'm sure there are lots of ladies, including myself who would be very interested in any details. Hope all goes well for you. Kathy xx

[gina]

Hi

I was one of the ladies on the trial.

It did not work for me unfortunately ,but I tolerated it very well.

It's good news that it showed excellent results for some .

Georgie

[111173 in reply to gina]

Hi Georgie

That's very interesting. I did read an a article written by the doctor who runs the trial and he did say that patients expectations are sometime too high. Were there placebos in the trial too?

I am interested to know how you were accepted onto the trial.

Lynne

[gina]

Hi Lynne

I don't think there were placebos as it was a phase 1 trial which is to find out what dose to give safely.

I received it at the Marsden in Sutton where I have been having my treatment for the last 5 years.

Georgie

[111173 in reply to gina]

I am trying for Sutton as it is my nearest, but have been at RBH in Reading for last 3 1/2 years.

I would be facing 4th line chemo next time and thought a trial would be the best route.

Lynne

[111173 in reply to 111173]

Hi Gina do you mind me asking where you are up to now?

Lynne

[gina]

I will be starting more chemo end July.

This will be my 7th regeme of chemo since 2009. I have also had Avastin and been on two trials.I also had some radiotherapy in 2014.

I will carry on for as long as the Hospital can offer me things.

It is a hard slog and I have had some awful days and weeks, but life is good and I want to be here for my darling husband for as long as I can.

Most people would not know that I have been through all this, I put on a good show and the good old red lippy helps..........

This wonderful site and all the lovely ladies on here are a great comfort.

Best wishes

Georgie

[111173]

Hi Georgie - I salute you and hope I can keep going for as long as you. I was diagnosed in Jan 2014 and thought that was bad enough.

I agree with putting on a good show. I play golf only when I can now and get similar comments about how 'well I look'. I wouldn't think of going through the door without applying plenty of 'slap'

My husband has also given wonderful support and my grandchildren don't even know that Nana is poorly! They really keep me going and the last one is only 4 months old.

It does help to know that there are other people out there experiencing the same life difficulties.

Will let you know if I am accepted for the trial.

Lynne