Trials

[Susie_50-s]

I am about to start chemotherapy next Monday for stage 3c ovarian cancer. I have been asked if I would like to take part in trials to do with how chemotherapy is given. 3 different trial groups. You find out which group you have been put in once signed up. 2 trial groups involve taking Bevacizumab along with carboplatin and paclitaxel and one group does not have bevacizumab involved. Could anyone tell me if they have heard of these type of trials. They seemed to be monitored for longer and bloods done more often. How do I decide on something as important as this. Any advice, info would be much appreciated. Susie

[Katmal-UK]

Hi Susie. I took part in one of the earlier trials for Bevacizumab (Avastin) back in 2007. I'm at work at the moment and will reply fully tonight . Kathy xxx

[Annr5h]

Hi Susie,

I'm presuming your talking about the ICON8 trial.

I have been on this I was on paclitaxel weekly and carboplatin every 3 weeks with bevacizumab. I finished chemo in September with NED and myCA125 was less than 5. Still on bevacizumab until July. So I'd say go for it as I've had a fantastic result. Xx

[Susie_50-s in reply to Annr5h]

Thank you for your reply. Fantastic outcome for you.

[Katmal-UK]

Hi Susie. Taking part in a trial is a personal choice. I am currently on my third. The first was Avastin which gave me a 4.5 year remission, the second Cediranib which gave me 18 months and the third (current) Ive been in remission 3 years 7 months. I do wonder if the first and second recurrences were caused by a shock I had, my first one was a month after my dad was diagnosed with terminal cancer, the second was a month after he died rather unexpectedly (that may sound odd but one day he was shopping in morrisons, the next day he was in hospital and slipped away). I do willingly participate in trials for two reasons, the first in the hope that they may give me more time with my grandchildren and the second that my taking part may benefit other ladies in the future. Also an added benefit is that I am monitored more closely. Currently I see my Consultant every 12 weeks with blood tests with a CT scan every 24 weeks. I have worked full time whilst participating in all three trials. I do hope you make the decision thats right for you. Kathy xx

[Julie40]

I'm on my second trial and I personally like that you are closely monitored. Both have been successful for me.

There is paperwork involved but it's only at certain appointments so not an inconvenience. I would speak to uour Onc about what options afterwards if you participate as my last trial we had to not have had a drug that would slow me access to the next trial. Sorry if that's sounds confusing, basically what I'm trying to say is make sure your Onc is one step ahead of what is available now and the impact of taking part in the trial xo

[Suzanne333]

I'm on this trial. I was in a group which does have the avastin. I was declared in complete remission at the end of January. I'm just having the avastin every three weeks now till October. 👍🏻👍🏻👍🏻Xxx

[Susie_50-s in reply to Suzanne333]

Thank you

[SamJD]

Hi. I'm also on this trial, stage 3c , surgery August 2016. And there was some cancer cells away from the ovary. After much deliberating About the choice and side effects I ended up In the group the didn't get the avastin. I instead had taxol every week, with carbo every 3 weeks. For a total of 18 weeks. I tolerated it well and was declared "no evidence of disease" in February. Because I'm still classed as on the trial I get regular check ups every six weeks with the trials team, rather than needing to go back through the GP route. Hope this helps, we are all different but let me know if you need any more information. Good luck, be kind to yourself, Sam xxx

[Susie_50-s in reply to SamJD]

Thank you

[Nicky100]

Hi Susie, I hope you are bearing up OK? If you need top advice in the country on research trials for ovarian cancer, I recommend Jonathan Kremlin in London. Love Nicky xx

[LesleyGreengran]

I'd go for a trial if I could find one. But it's an individual decision. There seem to be more tests and monitoring which has an up side and a down side. You can usually drop out if you change your mind part way.

[Cropcrop]

Hi, I did the ICON8 trial in 2014, I believe there have been other ICON trials both before and since the one I took part in.

I had weekly taxol and carbo every three weeks. The taxol and carbo are a 'known' quantity, the trials examine the best ways to administer them. I was lucky to go on the arm that seems to be the better one, I wasn't made aware of which arm I would be on until after I signed up.

I'm really glad I took part as I had and still have quite intense monitoring which was and still is reassuring and also it may benefit many others. My philosophy was that other people had done trials which enabled me to have my treatment so it was a no brainer to me + there was a benefit to me also. It's quite a personal decision and whichever way you go it will be the right one for you.

Hope your treatment goes well and that you keep well during it ❤xx Jane

[Susie_50-s in reply to Cropcrop]

Thank you Jane

[Paulmck]

Hi, without knowing any details I would suggest that I f you are going to get the Bevaciamub (Avastin) anyway I would stick with that. If the trial is your only way to get it then I would go with the trial.

Good luck.

[jdillon]

Hi Susie! It is a difficult decision to know what route to go sometimes! These ladies have given some wonderful opinions!

I also have Stage 3c clear cell. I started first line treatment of carbo/taxol in July. TMy CA125 was not coming down and they wanted to add Avastin (bevacizumab) after #4, but my insurance would only approve it as a second line treatment so I continued with only carbo/taxol. (To private pay would have been about $25,000/treatment so that was not an option.) I completed 6 rounds of carbo/taxol at the end of November and was found to be platinum resistant. I currently just completed round #4 of 6 on the second line treatment of Avastin/Doxil.

Long story short......based on my situation I would recommend going for the trial and hoping you get the arm that includes Avastin along with carbo/taxol. I believe typical protocol (at least in the USA) is using carbo/taxol for first line treatment. So if you sign up for the trial and don't get the arm with Avastin......worst case you'll still get the 'standard treatment' as if there were no trial available.

Hope that makes sense! Please don't hesitate to ask any other questions!

Hugs!!

Jodi

[Susie_50-s in reply to jdillon]

Thank you. It all points to Avastin being the way forward and hoping I get into a group which receives it. Nothing ventured nothing gained. As you correctly say Jodi you still receive standard treatment either way only the way they administer the chemo is different.

Susie x

[IrishMollyO]

Hi Susie

If I had ever been offered a trial I wouldn't have hesitated to say Yes. Despite asking for one I was never considered . From reading about the ladies here and other information on trials I have never read any negative thing. You are monitored more closely and you are also helping future generations of women. Good luck with it all

XXX

[Hidden]

Hi Susie. I've been on an Avastin trial for around 2 years now. Initially along with Carbo/Caelyx, then the avastin (only) continuing indefinitely, while it's working. So far so good. Very little in the way of side effects for me from avastin. Thoroughly recommend it. Best wishes. Pauline.

[Janet235]

I am on the ICON8B trial at Christie's... I seem to remember a longer window of more than a week - which is where you seem to be at - in making a decision whether I wanted to do it. I presume they have given you a bunch of paperwork to explain the different 3 'arms' of the trial and how you would be randomised to one of three routes of treatment. Also most importantly you can drop out at any point if you don't feel comfortable or right about it.

I got carbo/taxol 3 weekly along with avastin ( bevacizumab) . I had just had my 4 th ( half way there....) stand alone avastin treatment recently when a scan showed a new area of growth in my upper abdomen, along with 4 continuous rises in CA125 since Christmas.

I agree with all the ladies posting here, I would always go for a trial if offered , if nothing else you will be monitored closely . You have nothing to lose The research nurse I talked to after my onc appointment last week asked me if I wanted to stay on the trial even though I can no longer have avastin...

you bet! Go for it I say and good luck - Janet 🌈

[Hidden]

I agree. I can't see any downsides to this one.. you'll get what you would have anyway and you may get the extra which may be beneficial for you and you'll be looked at more closely.......I'd go for it. x

[Rosewall101]

Hi susie, first question I'd have for my onc would be whether I'd get carbo/taxol and beva. If this is the case then I wouldn't opt for the trial. But the NHS do ration the beva (Avastin) and I've seen many ladies on this site talk about being turned down. So if the trial is the only chance of you getting it then I personally would jump in. With the carbo and taxol you would be receiving exactly the care that everyone else gets for first time ovarian.

I can see you need to make a quick decision. Good luck.

T. X

[coalole]

I am on this trial, called ICON8B by my hospital.

Pros - they aren't giving you untested treatment - this will work. I think they are interested in side effects rather than how the drugs work

Cons - Don't say the word trial to an insurer for travel. The ones I've talked to won't cover you if you say you are on a trial.