Vistusertib drug trial - OCTOPUS

[Ge0rg1na]

I'm new here and I am about to start this drug trial and would love to contact someone else who's been involved with it. Good or bad experiences you'd like to share, please!

[Maggie2650]

Hi Georgina

I am on the Octopus trial in Brighton. I have just finished my 6th cycle today, and as I have had a good response, they want me to carry on for another 2 cycles. I will have a short break to spend some time with friends in Washington DC over the new year and restart on January 8th.

I was diagnosed stage 3c high grade ovarian cancer in July 2015. Paclitaxol and Carboplatin with surgery. Finished April 2016 and reccured in August. Doxil for 6 months and reccured in May 2017. I am platinum resistant Started the octopus trial in June.

I have found it relatively easy - just a bit of a nuisance as it is weekly (3 weeks then 1 week off). I of course do not know if I am having the drug or the placebo!! The only side effect I have is 48hours of diahorrea, but I manage it with Imodium which is preceribed. My hair has gone again of course! My CA125 I’d down to 9. It is certainly a lot easier than either of the other regimes I have had, but I must admit that I am very lucky that I don’t suffer from many side effects to anything. I have a PICC line as I didn’t want a port. I have a waterproof cover for my line which means I can swim. I have as far as possible kept myself fit and can easily walk 6/7 miles. I know that everybody is different but you shouldn’t suffer too much with this regime. I feel I am being very well looked after on the trial - loads of scans, heart checks and being listened to. Great staff looking after me.

Have you reccured several times? I hope this is as good for you and let us know how you are getting on. Good luck!

Maggie x

[Ge0rg1na in reply to Maggie2650]

Hi Maggie

Thank you so much for your long and frank response to my post. I typed a long (and also detailed!) reply but the website chucked me out as I had left it too long without activity. I will take up the cause again later this week - I've lots to share as I started my journey with Stage 1a Fallopian tube cancer back in Oct 2010. I've had most treatments as I've had many recurrences but never had paclitaxel! I'll try anything once!

Gina x

[Ge0rg1na in reply to Ge0rg1na]

Maggie

To carry on from yesterday, I wanted to tell you again how pleased I was to read your response. It’s a lonely journey and although I have many friends supporting me, none of them have OC.

When I discovered I had OC back in 2010, I lived in the Netherlands. I had a hysterectomy in Amsterdam then returned to the UK for chemotherapy (Carboplatin). I had an 18 month remission following which I had several recurrences requiring 3 different operations, a couple of trials (including Rucaparib and Aeriel 2) and various cycles of chemotherapy Gemcitabine/Carboplatin/Avastin and most recently Carboplatin/liposomal doxorubicin.

Joining the trial (squeezing in just before the trial closes) in London is probably my only option as I am now Carboplatin resistant but it is the 5th hospital I have attended. The staff I have met until now have all been very friendly but the time and travel costs of the whole treatment is quite eye-watering, especially as I could get Paclitaxel at my local hospital in Peterborough. The bulk of my treatment has been in Cambridge which is also 45 miles away. Along the journey I sold my house in Holland and settled back in the UK for good; back to my roots!

But enough! How exciting for you to be going to Washington. What a treat! What I remember most about the city is the Potomac River and the amazing transporters lifting you out of the plane and being lowered to the level of arrivals. I don’t suppose they are still around because I am going back 25 years at least! It was a business trip so I didn’t see much outside the hotel’s meeting room.

Have a great time and perhaps we’ll chat again in the New Year. Merry Christmas and I wish you well in 2018.

Gina xx