Hi, I have been living with Myxoid Sarcoma (A rare soft tissue cancer) since January 2022. I'm doing ok, and am currently on a long term chemotherapy drug called trabectadin. I am trying to find other people who are on the same drug so that we can compare notes and experiences and maybe get more out of the treatment and the NHS. One of my concerns, for example, is that my oncology consultant isn't a sarcoma specialist and I am not very happy with that. Anyway, if anyone has similar experiences I would be happy to hear from you.
Thanks, and good luck on your journey. Andrew
Hi Andrew/Ramsbottom
I’m Anne, one of the Community Champions here on the Online Community, and I hope you don't mind me replying to you as I don't have the same type of cancer.
As you know, the online community is divided into different support groups so can I suggest that you also join and post in the soft tissue sarcoma group as you'll then connect directly with others who have this type of cancer and may have been on the drug that you are interested in. From doing a quick search in the group there do seem to be a number of people there with myxoid sarcoma.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
