Icon 9

[Welshandproud]

Hello lovely ladies. I am midway through my carboplatin/caelyx treatment and I have been asked to consider taking part in the Icon 9 trial when my carbo caelyx finishes. Has anyone else started on this regime and if so, how have you found it? Has it been bearable ? What were your side effects, if any? Thank you in advance. Sian x

[Lindaura]

This is a pretty new trial that I wanted to get onto after I finish Carbo/Caelyx at the end of April, because I wanted Olaparib as a maintenance drug, but my Onc insists on Niraparib (200mgs).

Here is the link:

ctc.ucl.ac.uk/TrialDetails....

Maybe because I am BRCA1 positive...so I get the Niraparib automatically here in Bath and I would have to travel to Oxford for the trial.

Here is info on Olaparib:

ascopost.com/issues/decembe...

I don’t know about the other drug...

Go for it, though!

Laura

[Welshandproud in reply to Lindaura]

Thanks Laura. Very interesting reading. Thank you for that. I spoke to the trials team yesterday and think I will go ahead with it as long as my tests and scans and so on make me eligible. Let's hope so.

[Katmal-UK]

Hi Sian, I am currently on a trial for Olaparib as a single agent and have been for 5 years 4 months. I trialled Cedranib in 2012/13 . The main side effect for me with Cedranib was loose stools and urgency to go. One of the side effects of Olaparib is the same issue but not as pronounced . Combine the drugs and I would imagine the same side effect but worse. Having said that that was how they affected/affect me. Not everyone gets the same side efffects. During both trials I have continued to work full time. A personal choice but I give it a go. I wish you all the best. Kathy xx

[Welshandproud in reply to Katmal-UK]

Thank you Kathy. I hadn't realised that you had taken both of these drugs. They seem to have been very effective for you. Let's hope they can do the same for me if I am accepted on the trial. Thank you for the thumbs up on the side effects x

[Cheryl4677]

Hi Sian. I’m at the same stage. I have consented for the ICON9 but it will depend if I meet their criteria. I’m BRCA negative and just finished 4 cycles of carbo/gem for my first recurrence. I’ve read the blurb and willing to give it a try. As others have said the side effects vary so much in us as individuals. I seem to have experienced several variants over these last 2 years!

Keep us posted if you start the trial. Good luck. Cheryl. X

[Welshandproud in reply to Cheryl4677]

Thanks Cheryl. It sounds like we are going along the same path. I spoke to the trials team yesterday and have decided to go along with it as long as I fit their criteria. It certainly sounds worth giving it a go. Let's hope we can both be accepted xx

[Lyndy]

I can’t offer experience of this trial but I have seen evidence that people on trials do better generally because they are so well monitored...on this basis it would be worth having a looksee. x

[Welshandproud in reply to Lyndy]

Thanks Lyndy. This was certainly the case when I took part in the Icon 8b trial and the trial team explained that there would be close monitoring throughout.

[Trathi]

Hi Sian, I am currently on Carbo/Caelyx having my third today. I have a CT scan booked for the 30th (which in one way I am dreading but another eager to see if it is working). I haven’t been offered entry into any trial, but may ask particularly if the tumours have not shrunk.

So sorry cannot help with side effects etc.

Sending you lots of love 💕 hugs and positive thoughts your way, anything is worth trying.

Tracy xx

[Welshandproud in reply to Trathi]

Thanks Tracy for that. It sounds like we are at the same stage of treatment. I am having my ct scan on 22nd April. I know what you mean about the scan results but we must hope and pray that it's good news for both of us. Sending you lots of love too xxx

[Cropcrop]

Hi Sian, it’s lovely to hear from you.

I can’t give details of any personal experiences from this particular trial but, if it’s any help, I took part in the ICON8 trial in 2014, the positives I found from taking part in the trial was the care and monitoring I received, they watch you so much closer and we had the added advantage of having dedicated clinical trial nurses taking part in our care and I also felt that taking part was helping the advancement in treating this awful insidious disease. Take care lovely lady ❤️Xx Jane

[Welshandproud in reply to Cropcrop]

Hi Jane thank you for replying. Good to hear from you too. I took part in the Icon 8b trial and was really impressed by the care and monitoring I received. I will go ahead with icon 9 if I am eligible after all the tests. Sending lots of love Sian xx

[tara108]

Hi. I was seriously considering ION9 in Australia and recently discovered I am not eligible. But I did quite a bit of research about it and looked up results etc of the previous ICON trials. It is a way to get on olabarib for free here as we can't get it until after 4 chemo's! or pay $60,000 a year! As I remember, one arm is olaparib only, the other, olaparib and ceredinib. Results were better if taking both, but also side effects were more difficult and some women withdrew from the trial on both drugs. BRCA 1 and 2 women had better results on olaparib than non genetic women.

Anyhow, do ask alot of questions and if you are interested, look up past ICON trial results etc on the internet. here are some links on current trial. Hugs from Oz.

clinicaltrials.gov/ct2/show...

cancerresearchuk.org/about-...

[Welshandproud]

Thank you Tara. I'm sorry you were not eligible for the trial. I'm not certain whether I will be either but I'm going ahead with the tests and keeping my fingers crossed. Thank you for the links. They are very helpful. It seems so unfair charging $60000 to get the drugs in Oz. Sending love back to you in Oz xxxx