Soft tissue sarcomas

A group for anyone affected by any type of soft tissue sarcoma, including those in the fat, muscle, peripheral nerves, synovial sarcomas and angiosarcomas. This is a place to get together, ask questions, share experiences and support each other.

Trabectedin (Yondelis) Is or has anyone used this?

No. of entries: 12 | Posted on 15 Apr 2013 9:07 PM

Trabectedin (Yondelis) Is or has anyone used this?

  • Due to start on the above. This will be my 3rd chemo. Wondered if anyone else has used or is using it.

  • Hi, I may be starting Trabectedin soon. How did it go?


  • Hi Summer How you doing? When do you think you will be starting Trabectedin? How many cycles do you get? I'm just interested as trying to gather as much knowledge as possible about the treatments offered as I'm a bit green about the gills about all this sarcoma business. Xxx
  • Hi, I am due to start in two weeks. 6 cycles or more if successful. I had doxorubicin with paliosfamide(trial drug) in 2011/12 which shrank lung and liver mets, then ifosfamide 2013. Both shrank tumours.
  • That's great Summer. Hope it goes smoothly for you. Sorry, I can't remember but have you ever been offered or had surgery for your lung mets? X
  • No, the only surgery I've had is a hysterectomy.
  • Summer, Is there a reason you haven't been offered surgery for your lung mets? There seems to be such a variety of treatment protocols around the country. Well it appears that way to me anyway! Sorry for all the questions and you don't have to answer! I'm just trying to get my head round what's going on out there and making sure that I'm getting appropriate treatment. I've read so many different stories that I just don't know what's best anymore. We put our faith in our oncologists but I'm starting to wonder if the route I'm going down is the best for me. Xxx
  • Hi sorry for late reply!  Well I started the Trabectedin but in October scan should kidney tumours not shrinking but lungs were. Had a 10 day course of radiotherapy on the kidney. Scan in December now shows not working on lungsbut radiotherapy did shrink the kidney!! Have come of Trabectedin and will now start 10 day radiotherapy on the lungs.  There aren't many options left chemo wise. Also I still don't fully understand why they don't operate! They do tell me but I forget. Cheom brain!  Anyway how are you doing?

  • Had three cycles of Trabectadin awaiting scan date to see the effect. Side effects mainly tiredness but no hair loss!

  • Had good scan results after four cycles so they plan to carry on with Trabectedin. Giving it every four weeks instead of three because my immune system is too low after three weeks.
  • Reat news.

    I have spinal tumour stabilised by doxi. But new lung mets bilateral 1-7mm and have ct on 20th feb results and decision on chemo on 25th.

    plan on trabectedin 3wkly. 24hr pump. Plan discussion on poss combi with pazopanib too.

    anyone else had dealings with trabectedin with sts or lung mets??

    enjoying my chemo break and new hair growth.

  • I am getting my second dose of yondelis today. my mets in my lungs are around 30mm so this is last chance saloon for me. I find extreme tiredness Is just about the only side affect. but boy is it a frustrating one.hope its the chemo and not my lung getting worse.long wait till 3rd cycle before scan but then again time fly's when you have cancer.

    Hope this helps.