ICON9

[janet53]

Has anyone been on this trial? I have been offered this or Niraparib and would welcome

advice on choices (or of course do neither?)

Many thanks

Janet

[Hidden]

I didn't qualify for the ICON9 trial because of my bloods, which was a shame because I wanted to give it a try, I will not be offered it again in the future because now that I have tried Niraparib I am no longer eligible. It is worth asking questions as I was not told that a PARP would limit my clinical trial options in the future, Good luck.

[janet53 in reply to Hidden]

Thanks Lyn good timing as I have clinic tomorrow will flag that up x

[sticky3006]

Hi Janet, I looked into it as I think it offers Cediranib and Olaparib. I think the Cediranib does have a few side effects (gastrointestinal mainly) but it’s shown promising results. I’m sure there’s a couple of ladies on here who are on it. Instead I opted for Olaparib only as I went for the easy option! Good luck. Sticky3006 xx

[janet53 in reply to sticky3006]

Decided to go for it....I may only get the Olaparib anyway! Any hints for management? xx

[LittleMissStubborn]

Hi Janet. I have been on this trial for almost a year now. It is randomised and computer said I was to have both drugs, Cediranib and Olaparib. It was a bit difficult at the start. I felt very sick and had to visit the toilet urgently most days. The sickness subsided, the diarrhoea was dealt with by a dose reduction of the Cediranib.

After 3 months the scan showed a 15% reduction in all areas. Subsequent scans showed another tiny reduction in one area and now stability. I know it is incurable so stability is fine.

The standard of care on this trial is first class. I can speak to someone almost straight away if I have a concern. I have bloods checked and a meeting with my consultant every four weeks. I am living as well as I have done with this disease although sometimes I feel so good I overdo it and then have to sleep for a day!

I have no regrets whatsoever about being on this trial. I just hope it continues to work for a long time .

Good luck with your appointment. I hope this helps with your decision.

Nicola x

[Birdsong222]

I was on that trial this time last year. The computer picked me for Olaparib only. I had no issues with this parp and felt well. It worked for a while but my ca125 started to creep up slowly. Had to come off the trial after 6 months and back on to chemo. Trials like this are well worth giving a go as evidence proves they work for many ladies. Good luck with future treatment.

Sylvia x

[janet53 in reply to Birdsong222]

Thank you! I made the decision to try the trial yesterday because of positive responses from you and others...don’t worry won’t hold it against you if it doesn’t work😂

[Cheryl4677]

Hi Janet. I was on the ICON9 trial with both Olaparib and Cediranib. I stayed on it for over a year but side effects increased and Ca125 started rising. I experienced anaemia and some discomfort with increasing bouts of diarrhoea. The dose of the Cediranib was reduced which helped but the cancer was progressing so stopped the trial and now on Carbo/Caelyx chemo.

No regrets about starting the trial and for much of the time felt well enough to lead a normal life despite being shielded by Covid.

Good luck in whatever path you take.

Cheryl x

[janet53 in reply to Cheryl4677]

Thank you Cheryl decided to try the trial..I am just in remission from C/C so good luck with that xx

[Cropcrop]

I can’t comment on this particular trial but I took part in the ICON8 trial in 2014 and found my level of care to be fabulous, I had direct numbers for the trials nurses and could ring at any time if I had any questions or issues. The monitoring is superb and my take on it was that it would benefit me and hopefully others to come.

Good luck with the next step you take on this rubbish OC journey and I hope you get the results you want and deserve.

Take care and stay safe ❤️Xx Jane

[janet53 in reply to Cropcrop]

I am going for the trial thank you for helping me make a choice! Could I ask where you had your fabulous care...I am at Guy’s Cancer Centre xx

[Cropcrop in reply to janet53]

I was treated at the Christie in Manchester, I still go 6 monthly for bloods which is really reassuring.

Good luck lovely, we’re here to support you every step through this. Stay safe, love and virtual hugs ❤️Xx Jane

[ellseybellsey]

I have been told I won’t qualify for this trial as I was taken off Niraparib due to toxicity.

Hugs Ellsey xx

[janet53 in reply to ellseybellsey]

Ah so good to go for trial first? I did ask yesterday if I could go on to Niraparib if necessary think I should check thank you xx

[janet53]

Hi Nicola..so decided to take the trial..find out next week if it’s one pill or two! It seems I am the first person to take this trial, I am at Guy’s Cancer Centre..my doctor said yesterday it didn’t shrink just hopefully stopped growth. Different from your experience it seems..anyway thank you for writing to me, helped me make a choice! xx

[LittleMissStubborn in reply to janet53]

Hi Janet

Pleased to hear you have gone for the trial. My consultant never said it would shrink as it is a maintenance trial. However I am BRAC2 positive which apparently responds well to these drugs.

You should be very well looked after at Guys. Keep us posted as to which group of drugs you are allocated and how things go.

Sending a big, hopeful hug.

Nicola x