Hi all, just to let you know I've had some feedback on the ICON8 trial. This trial was to see if weekly chemo had better or worse results than 3 weekly chemo.
The answer up to now is there is no significant difference in which way it's given. There hasn't been enough time to see if it helps to live longer but that will be ongoing. There was no difference in recurrence percentages. I'll get the official letter later in the month.
Hope everyone is ticking along nicely.
Best wishes,
Zena x
Thanks, Zena,
I guess these results should show the difference in side effects and how patients cope on either regime.
Hope you are doing well,
Hugs,
Laura
Hi Zena- not surprising on the initial conclusions. It will be interesting to see the full results. I suspect that if ladies are able to tolerate the drugs better then less reductions in doses might be needed. Probably not significant in the long term for most though.
Hope you are well.
Best wishes
Fay
Hi Fay, I was told by my trial nurse a couple of years ago that I was very lucky because most of the women on the trial (in our area at least) had died so it didn't seem to make much difference to mortality. I think she said that to make me feel better that I was still here but it actually had the opposite effect. xx
I think I was getting my treatment while that was in flight. I was having the standard 3-weekly treatment and was always the last person left in the chemo suite - they'd all come in, have their session and go, while my session dragged on for a full 7 hours... but if there's no difference, better to get it all in one hit rather than three, however long it took!
Even though my chemo was weekly it still took the full day so there was no time gain. It was just one of the drugs was spread across the three weeks, the other was only given on the third week. I'm not sure how this worked as I always seemed to be there a long time. x
So maybe it's just us on taxol/carboplatin that take forever! In my case there was also a delay as the administering hospital's equipment was "broken" and the solutions had to be couriered from another; the fix took weeks (two of my three-weekly sessions) and I joked to the nurses that I could have gotten the bus there and back and picked it up myself in less time!
I was was on Carboplatin/Abraxane due to a taxol allergy and it took 6 hours plus every week.
They lost my records three times and I used the cold cap which added time. All the different cancer patients had different chemo concoctions and most were quicker than I was. x
Thanks Zena it’s good to hear the outcome as I often wander why some patients are on weekly, and why some are 3 weekly.
Ellsey xx
I don't know if they're going to continue with the trial with a larger number of people. At least they're trying new things. x
Hi Zena,
I took part in the ICON8 trial in 2014. I had the official results recently and it does show little apparent mortality difference in each arm of the trial which, I guess, makes some sense as it’s ultimately the same treatment dose over the 18 week period just at differing dose periods. As I understood it when it was explained to me by the prof, the drug had a known efficacy in many cases but that the trial was aimed at seeing if the three different administering methods of the drugs had any effect on the side effects and which, if any, was a kinder way of giving the chemo for the patient. I had two friends on the trial with me, they were on both drugs each week, I had weekly taxol and tri weekly carbo, they said they felt continuously ‘unwell’ I, on the other hand, on my taxol only weeks was fine, just a little tired, but on the full dose carbo and reduced taxol week I was quite unwell. Also we’re all different and we all have different types and stage of OC and we all react differently to any one particular drug. I suppose by continuing to do these trials they will, one day, hopefully soon, find a regimen that does the job for everybody with the least side effects possible.
A big ‘upside’ for me being on the trial, obviously other than being still here and well, was the monitoring we had, and still have this is such an important physical and psychological help when dealing with this disease.
Keep on keeping well lovely, thank you for sharing with us ❤️Xx Jane
Hi Jane, it sounds like I was the same as you with only being tired and having blood transfusions. I started the trial in 2013 and I'm still being checked and have been asked to continue filling out the questionnaire. I'll keep it up because you never know it might help someone.
I'm pleased you're still feeling well. We're the lucky ones. Zena xx
Thanks for sharing. My dr wanted me to have weekly taxol but I refused because I wanted the three week interval. I did wonder how the side effects would compare. I’m interested to hear the final results on that. Xoxo
For me Delia, other than the peripheral neuropathy, (and I still swear I have chemo brain) there was very little in the way of problems. I had a couple of blood transfusions and felt tired but otherwise carried on as normal as much as possible. I think I was very lucky. I hope you didn't suffer too much. xx
I had the same as you though days 6-10 I was so tired and nauseous I could barely get out of bed. The rest of the time I was pretty well except in the weeks before the blood transfusions when I became increasingly breathless. I am hoping the neuropathy might get a bit better--yes, and my memory is messed up, though just for names. xx
I was on ICON8 in 2014 and had chemo weekly. My bloods were occasionally a bit iffy (cue Neulasta injections and one transfusion), but otherwise I had no other problems. I still have some peripheral neuropathy, but have been NED for five years. Not sure how you can measure results really, as we all seem to be so different and our symptoms so diffuse, even with the same chemo. Deb x
That's good news Deb, sounds like Delia and me. Let's hope everyone on the trial was as lucky. x
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