Anyone on the octova trial?

[MrsRound]

I’m dealing with my 3rd recurrence now and am considered platinum resistant and BRCA negative. I’ve been for some initial talks with the lovely Dr Susannah Banerjee at the Royal Marsden and am being considered for the octova trial. Anybody else had or is on this trial?

[Annr5h]

Not heard of it but would be interested to know what it is. I’m on my 2 nd recurrence and on weekly taxol but markers are rising. Hope it a good one for you. Love Ann

[MrsRound in reply to Annr5h]

How are you finding the weekly taxol regime? Do you need antisickness meds/steroids alongside it?

Lucidalil has given details about the trial which is very helpful. Don’t think you can have this one though as you’re already on taxol.

[Annr5h in reply to MrsRound]

No, I’m fine on taxol only side effects are hair loss slightly sore mouth and bladder is sensitive.

[MrsRound in reply to Annr5h]

That sounds manageable then. Sorry you’re markers are rising. Hope you can find a trial to help you. Marion

[Lucidalil]

Hi, I am platinum resistant and BRCA1.

I was on the Octova trial for approximately 18 months . It is or was then a 3 arm trial, you are randomly chosen by computer to see what arm you get. I got the baseline arm ( I always tend to lol) I had weekly taxol . You continue to have it whilst it works for you. I had it for 7 months. Although I achieved 98% shrinkage of my tumours they then started growing a wee bit. They took me off it but the same day I started olaparib this was an option on the trial should the taxol stop working. I then had olaparib from the January to October 2018.

I did use a cold cap when on the taxol and didn’t lose any hair, I even continued to colour my hair lol ( though you are advised not to lol )

Carolyn 😁

[MrsRound in reply to Lucidalil]

Thanks for the info. I’ve just had a ct scan and go back next week to confirm if I’m suitable. They had a lot of trouble taking blood and canulating me so I’m hoping that if I’m offered the baseline taxol that they will let me have a port or pic line. Somehow I’ve managed without one to date.

Interesting re the cold cap as I’ve not tried it to date but as I have already lost my hair twice was wondering if I could give it a go! How long did the infusion take and how much extra time does the cold cap add on?

[Lucidalil in reply to MrsRound]

Hi,

I have had trouble in the past with veins as I had breast cancer in 1999 with axillary clearance so can only use the one arm for bloods.

After having 3 picc lines i have had a port for 3 years it is brilliant bedt thing I had done as can use it for ct scan contrast as well.

I have lost my hair a few times as well so was happy to keep it with the cold cap. It adds 30mins before and I think 30/60 mins after, I didn't mind the time and found it a doddle to the one I tried in 1999 now that was cold. They are all done will gels inside the cap rather than ice as they did before. Just use one of those towelling hair bands around your forehead and ears to keep the chill off. I think the infusion itself was an hour .

Carolyn 😀

[MrsRound in reply to Lucidalil]

I think I’m interested in having a port if allowed as it sounds easier management and less chance of infection-great that yours has been successful and can be used for the ct contrast scan too.

The cold cap sounds as if it’s worth having a go and thanks for the handy tips!

Marion

[Lucidalil in reply to MrsRound]

Hi Marion, the port is fantastic , yes you have to have the op to get it fitted but I was only sedated for it and actually chatted to them through the op and was back home in a few hours. My last picc took 2 hours to put in and never worked properly from the start. The one prior to that used to block up. Never had an issue with this port in over 2 years. And it only needs flushing every 12 weeks if you are off treatment 😀.

Cold cap is excellent too, when I first had one 20 years ago it was almost like a jockey cap filled with ice that they had to change after 45 mins as your head heat melted it. It was like instant migraine. They new ones are a doddle, yes they are a bit chilly but you soon get used to it and it never gave me headache 😀.

I am at the marsden tomorrow to see about a phase 1 trial - I am lucky to live within 30 mins of it

Carolyn xx

[MrsRound in reply to Lucidalil]

Hi Carolyn, that’s all very informative and reassuring to know thank you.

I hope you get on ok tomorrow and are accepted on to the trial. Which site do you attend?

I’m back to the London Marsden next Tuesday-takes about an hour from home so not too bad.

Let me know how you get on

Marion xx

[Neona]

Also ask about the Patriot trial . I have been on this for 20 months and have been stable. They don’t know why it has worked for me- however I am platinum resistant/refactory and brca negative. It is a phase one trial so you are guaranteed to get the new drug. I have clear cell stage 3c.

[MrsRound in reply to Neona]

Thanks for the info Neona-I’ll certainly look in to it. Sounds excellent news for you.

[artzombie]

Hello, I've just started the Octova trial. I'm on the 3rd arm (olaparib and cediranib tablets) and I only found out which drugs I would be getting yesterday. I started taking daily tablets today. It only took about 3 weeks to go through all the tests and get everything set up. I'd be interested to know if anyone else is on the same arm as me and see how they are getting on. You do need to have lots of tests at every visit and a CT scan every 8 weeks while you are on the trial. I came home from my appointment yesterday with a big bag of tablets to last me a month. You have to be quite strict about taking them at the right time. I have to take the cediranib without food as soon as I get up and then I can't eat for a least an hour - then I take the olaparib with food, once in the morning with breakfast and then again 12 hours later with supper/dinner. I'm hoping it doesn't affect me too much but so far I feel OK.

[tips in reply to artzombie]

Hi .... Just wondered how you're getting on with the trial ? I've just been allocated the same arm as you.

Do you get really tired ? I get up and then could go right back to bed sometimes!! I'm hoping the side effects die down after the first week

Thx Pam x

[MrsRound in reply to tips]

Hi Pam

I’ve just started my second cycle of weekly taxol and am not finding it too bad so far. I do get tired by the afternoon and am often in bed early evening as I get tired and grumpy! I’m just pleased that it’s not causing me any nausea so far. Where are you having your treatment? I’m at the Marsden in london for mine.

Marion x

[tips in reply to MrsRound]

Hi .... I got arm 3 ... Both lots of pills and it's knocking me out completely !!! ... No other side effects as such but I could sleep for Wales !! ... I'm at UCHL and live outside of Cambridge so a bit of a treak

Good luck with the rest of yours...... Pam x

[MissEd]

Hi ladies, wondered how your getting on, my mum has just been offer octova after being on onyx for 8 months and it starting to grow a bit