TREBECTADIN

Hi BootsyD

I haven't had this treatment myself but noticed that your post hadn't had any responses.

I put 'trebectadin' into the search bar in this group and also the soft tissue sarcoma group but didn't come up with any matches. However, I have found matches for 'trabectedin' and it's manufacturer's name 'Yondelis' in both groups if this is the drug you meant.

Unfortunately the posts are quite old but you might like to post your question in the soft tissue sarcoma group as there may be people there who are on this drug but who haven't posted yet.

There is also this information on the drug from Macmillan which you might find helpful.

x

Thank you for your reply.  Yes Yondelis is the other name for trebectedin- we have the printout from the oncologist. I was just fishing. Those posts are quite old but any info is good. 

Thanks again

Hi BootsyD

Sorry, I've only just seen your post or I would have replied sooner.  I've just had my 15th cycle of Trabectedin.  I too have sarcoma with numerous tumours and other chemo regimes were doing absolutely nothing to help.  Trabectedin has slowed down the growth of the tumours considerably, although I have never reached a stage where I am stable.  I have it via a pump over 24 hours.  Initially the cycles were once every three weeks but now they are every four.  I find that the week I have my infusion I'm a little off colour but nothing major and then reasonably good until the next one.  Fatigue is the main problem, and that is building up with each cycle.

I will keep a look out for your posts so please do ask if you have further questions.

Best of luck to your husband - I hope he has found the first infusion to be OK.

Kind regards

NorfolkLass

Hello NorfolkLass, thank you for being in touch, it's good to hear of someone on the same treatment and so many of them too! It appears to be doing some good work for you and keeping the 'thing' at y! Colin had his first infusion 10 days ago and to be honest hasn't been too good. He's been a bit breathless then constipated, took laxatives that worked too well which subsequently resulted in bei admitted to our local hospital. They were chasing an infection they can't pinpoint (we know it's the cancer, its happened before ). He was given 2units of blood  and was neutrapenic.  So after 5 days in isolation he's a bit peed off but 'might' be discharged today Infusion 2 is due on 6 March. 

Have a good day

BootstyD

Thr fingers crossed symbol has popped up in the oddest of places!!! I hope you can make sense of what I have tried to write lol!!!

Hi NorfolkLass so Colin has been in hospital a full week now having had 4 units of blood and antibiotics during that time. He has been waiting for a ct scan on his head since Mon because he was experiencing some double vision and also mets on his head. He is totally fed up and just wants to be home with me. Out of the blue on Monday we had a conversation with the oncologist about DNAR.  It knocked me sideways and I can't get it out of my head that the end could be near. We're hoping it's way in the distance and won't be needed. 

X