OCTOPUS Trial

[111173]

As some of you may have read I began the OCTOPUS trial at the beginning of October for repeated recurring PPC. The trial involves Taxol by infusion and trial drug in tablet form. As the trial is randomised you don't know if the tablet is chalk or chemo, but judging by the side effects I have experienced, I would say the tablet is chemo. The treatment is administered weekly for three weeks and then one week off. I am being closely monitored.

I have experienced some severe light-headedness at times, difficulty swallowing, mouth blisters, sore gums irritated nasal passages and some fatigue. Everything seems to be happening from the neck up, but I hope it's being effective below too!

I am due to see my oncologist today and discuss progress. The side effects so far are unpleasant but manageable but I am sure they will be accumulative. We will have to wait and see if this new drug combination will work, but here's hoping.

Lynne x

[Janet235]

I know what you mean by everything happening from the neck up. Over the last year I have constantly felt I am swimming in an light headed alternate world so much so it has become the new norm for me..

I actually turned down the option to go onto the OCTOPUS trial in the Summer so am very interested as to how it works out for you.

After two disastrous caelyx infusions I was so physically down, disease returning and CA 125 shooting up to high 5000+ I was desperate not to delay and wanted to get back to treatment ASAP. Am now half way down the weekly taxol only route. So far so good and yesterday's CA125 test was 280... yay!

Janet x🙃

[111173 in reply to Janet235]

As I was being offered weekly Taxol anyway - because I am now platinum resistant - I thought the additional OCTOPUS drug was worth trying. The last previous chemo was carbo/gem and that really hammered my blood counts, leading to me being in hospital on Christmas Day last year. My CA125 did go down to 97 but had started to rise again 6 months later. When I started this trial it was 625, so we will see how it goes.

If this doesn't make any difference, I have been told that I can return to The Royal Marsden and try something else. I am currently having this trial in Reading.

I hope your CA 125 continues to fall, but there are other trials out there if you press for them.

Lynne x

[January-2016-UK]

Hope your meeting with your oncologist went well. Does sound as if you’re not on the placebo Hope the side effects don’t get any worse.

[thomas62]

HI Lynne,

Thanks for keeping us upto date. Fingers crossed you can keep managing the side effects, as you say, from the neck up!

Gwen xxx