third time lucky? trial on trabectedine or standard 3rd line chemo

[spikey62]

After hysterectomy (2011), 6 cycles of taxol/carbo, remission for about 8 months then recurrence. another 6 cycles of carbo/taxol which I finished July 2013. I have just had results of scan which shows cancer come back again. I have been offered a place on a trial at Christie's using trabectedine with caelyx or standard 3rd line treatment of gemcitabine/carbo. Anyone have any thoughts ?

[Whippit]

Hi Spikey

I'm happier for having a choice because it gives me hope there are lots more tricks up their sleeves to keep me going. When I was given a choice at the RM last year we agreed to try one that wasn't available for the future so I had Gem/Carbo and Avastin which kept options open for future treatments.

I think I would ask for the research results to date on the use of Trabectedene and and Caelyx so see how successful it had been previously, how long that trial will last for, and what happens if the trial is successful - i.e. will Trabectedene go through NICE's approval process and how long will that take. The thing is nobody ever knows how successful a particular treatment will be for an individual until they've tried it.

If you go for the Gem/Carbo combination I found it quite tolerable though if you're travelling a distance to the Christie it is given 2 weeks in three so it can turn out to be quite an exhausting regime.

I'd love to know which you choose and how you get on with it.

Best of luck working out your choice.

Love Annie xxx

[Hidden]

Hi, Trabectidine is a new drug which is a targeted therapy much like Avastin. It is infused over 24hrs by a pump which is attached so you can go home with it. The only thing would be to remember that when signing up to trials only half will get the new drug with Caelyx, the others will get Caelyx on its own. Xx

[spikey62]

thank you for your responses. I have been reading all the info I was given and I think I am going to go for the gem/carb option. It seems that the trial goes on indefinitely (either until the side effects become too bad or the disease continues to grow). At least with the standard treatment I know that after 6 cycles it will be finished again (for a while anyway)

[francescahannah]

it's hard making choices like this but I'm glad they're trying something else. I think I'd only go on a trial if I knew I'd get the drug and there was an end date for treatment. I'm on 5th line chemo at the moment of weekly taxol and after 7 sessions it's brought my CA 125 down from 1200 to 29 and it's been far more tolerable than I expected. I have done well though as I was diagnosed nearly 10 years ago.

I'm at the Christieevery Tuesday if you happen to be there and want to say hello. Good luck withthe treatment

Francesca x

[spikey62 in reply to francescahannah]

hi and thank you for your input. I daresay our paths may cross at Christies when I start treatment again as Tuesday is usually treatment day! I don't know yet when I will be starting, I have to contact the nurse to give my decision on which treatment I want. Also we were hoping to squeeze in a week away somewhere warm before I start treatment and as it is my birthday on Monday (62)., although I am not sure if I will be ok to go away as my abdomen has started to fill up , it's not too big yet so I might manage!!!

[francescahannah]

Great idea to have week away if you can. I am under Dr Welch. When you get started if you fancy meeting just contact me

Francesca x

[daisies]

Hi. Sorry to read that your OC has recurred - but just a question, I thought trabectedin was used for a particular type OC - sarcoma. Maybe this is your case - but ask the question. Have not come across any of my fellow OC 'girls' where I live on that drug. Someone else may throw some light on this - as I may be confused. But sending you my best wishes for the best treatment that is suitable for you.

[spikey62]

Hi daises. I have just had another look at the info I was given on the trial and it says it is for advanced relapsed epithelial ovarian cancer. I must admit I am not quite sure what that means. I have decided not to take part in the trial so I will be taking the standard gemcarb option.