Clinical trial Icon 9: Hello ladies, I have been... - My Ovacome

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Clinical trial Icon 9

Duskygem profile image
7 Replies

Hello ladies, I have been invited to take part in the Icon 9 clinical trial. The onc will send me info on it but I wondered if you have any experience or info you can share with me. Thank you

Duskygem

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Duskygem
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7 Replies
Mumsie13 profile image
Mumsie13

Hi Duskygem. So pleased that you have been able to get on a trial. I have not been on a trial do far but when I was researching the ATARI Trial I found quite a bit of information on cancerresearchuk.org. They have information on various trials and Ibelieve there is some info on ICON Trials. Good luck🍀. My oncologist offered to apply for ATARI trial for me as I didn't fit the trial criteria before but I do now. However we decided it might be better to go for more chemo treatment while I still can. Trial might be an option for later if and when we get to that point.

JustKBO profile image
JustKBO

Sorry no experience of this but we’ll done for going for it. You sound like a determined lady so I’m sending loads of encouragement and will follow your progress. Good luck. Maria.

Cropcrop profile image
Cropcrop

Hi Duskygem, I took part in the ICON8 trial in 2014. The level of care and monitoring I received throughout all the treatment and also since have been really exceptional, I’m back for bloods next week as part of that trial so I’m still being monitored 7 years on which is really comforting to me and I know if I have any issues at all I can make a phone call for reassurance or an appointment if necessary. Your onc should explain the details fully of the trial to help you make a fully informed decision, it’s possible you can research the trial on the interweb which may help but you will get all the information you need that outlines all the factors involved and which gives all the possible pros and cons of the trial. If I had to do it all again I’d take part in the trial. Best wishes and hugs ❤️xx Jane

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hi there Duskygem

It’s great to see you’ve had some informative responses to your post from members of the forum community. I’m sure your oncologist will provide you with lots of information about the ICON9 trial, but just in case you were keen to browse in the meantime:

- As Mumsie13 suggested, Cancer Research UK have an informative page here: cancerresearchuk.org/about-...

- Clinicaltrials.gov also provide some more details on their website: clinicaltrials.gov/ct2/show...

If you would like to discuss anything further with a member of the Ovacome support team, please don’t hesitate to get in touch. You can message us directly through this forum, or contact us via our Support Line on 0800 008 7054 or 07503 682311, by email at support@ovacome.org.uk or via the Instant Chat function on our website. We are also available to talk by booking an individual video call if that may work better for you. All our services are available Monday – Friday, 10am – 5pm. Even if you don't have a specific question or query, we are happy just to have a chat.

Best wishes

Annie

Ovacome Support

Tillymint61 profile image
Tillymint61

Hi there I have been ICON8B since September 2019. I was offered this and another that I can't remeber the name of. I chose ICON 8B after reading the notes for both that where given to me by the oncologist. The treatment I have been on is actually the same as '1st line standard of care' that is offered for my type and stage of cancer. This was because the computer puts you through a selection called 'randomisation' and decides which arm of the trial you will go on. I was classed as being in the 'control group' the difference would have been that my 18 Avastin treatment would have been given to me every week rather than the standard 3 weekly. In essence with the trial Iam on it is for the 'greater good' in terms of research as there was no additional benefit to me as I was randomised onto the SOC group. The downside of the trial for me has been I was not allocated a Cancer Nurse Specialist but instead a 'trials nurse' who was very nice but not always able or available to answer my queries. I haven't had a straightforward course of treatment which is nothing to do with being on a trial. Research what ICON 9 is and how it varies from what treatment you would otherwise be offered IF you were selected by the computer. Good Luck with your treatment whatever you decide. X

Realistic profile image
Realistic

Sounds brilliant hope it works and keeps you well. Please keep us informed. And good luck with your treatment Sending love SheilaFxxx

SASSY196 profile image
SASSY196

Hi, I was on this trial I it's the paclitax which is given three weekly. I was in the group that received carbolplatin 3 weekly, Avastin 3 weekly and paclitel every week ( in third of a dose). As Tillymint says the trial is for greater good. I found going to hospital every week took a lot of time, I had to go 2 x every week, for bloods then chemo. I live near the hospital I attended but it still felt a lot. I recurred after about 7 months whilst still on Avastin, of course's this may have happened a lot sooner , we can't know but I suppose my view is to balance your quality of life. In retrospect I don't think I would have done trial, the same treatment is available as control group as NHS standard 3 weekly all drugs ( I believe so check this(). Being at hospital at least 2 every week was so much time when I could have spent doing nice things. Other people will of course feel differently and of course I don't know how it felt to be in control group re side effects or if I extended my Ned by having weekly paclitel. Good luck in whatever you decide, hopefully cancer will be kicked into touch. Lots of love, Sara xxx

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