Hi, I have created this post in part to try to share my own experiences but especially to try to find people who are having similar experiences to me.
Brief history: Diagnosis January 2022, of myxoid liposarcoma having found a lump on the side of my leg the previous October. Inside of left knee about the size of a half grapefruit. Took ages to get diagnosis, my GP said it was a Cyst. Had 25 radiation treatments in April 2022 and 'flap surgery' in May 2022. The radiotherapy killed 80% of the cancer cells but by the time they operated May 25th it had metastasized into my groin and pelvis. I then had doxorubicin and ifosfamide (2023), which didn't work... there was more tumour growth but not spread (metastasis). In January 2023 I was told that my cancer was incurable and inoperable, and I was now on palliative care. I had 3 cycles of gemcetabine and docetaxel, which didn't do much either. Then I had 15 more cycles of radiotherapy (January 24) which produced (according to records) an 'excellent response'. Spring 2024 I had a break from treatment, being fit and well until June 24 at which point my notes say 'disease progression'. The oncology team would not give me any more radiotherapy even though this is the only thing that has ever really worked. From July 2024 until now (May 25) I have been on three-week cycles of trabectadin. I'm tolerating this ok. I am told this is a 'last line treatment', meaning that if this fails too, then there are no other options. Fortunately the trabectadin seems to be holding the cancer as it is. I've had 15 (actually 14.5 because of one mix-up) cycles of trabectadin and the tumours I have are only showing differences in size on millimetres which may apparently be attributable to how it's measured. My situation is described as 'stable'. I also have lymphoedema, as a consequence of the cancer being in the lymph nodes in my left leg. On a day to day basis this is the main thing that holds me back. I take morphine every day, also prophylactic antibiotics to reduce the risk of cellulitis in my leg.
Generally I'm doing ok. I have read about people who have my diagnosis and the most common survival time is 30-33 months, typically for a 50 year old. I'm currently at 35 months (depending how you cut it) and I'm 67 and male. I regard my treatment experience as mixed, on one hand I'm still here which is good but for example I had a horrible hospital derived infection on my release from hospital in June 2022. I have just been moved off the list of my original consultant who I had a high regard for, I am now under a consultant who isn't a sarcoma specialist which is really worrying
Why am I here posting this? I want to learn as much as I can and try to be proactive in my treatment. I'm not going to be a victim here. None of us should be. Also if we feel what we are getting isn't good enough then I think we should be prepared to say so. But it would help to know what could be done better. I feel we have to be our own experts. Throughout my cancer journey I have felt really on my own. To the extent that when I go in for chemotherapy with trabectadin the nurses will say 'ooh, we've never heard of this one', even though it's been my 15th infusion. Anyway.....
- First, I am looking for people who have similar experiences to myself (diagnosis, treatment, maybe even demographics) so that we can compare notes.
- Second, I am especially looking for people who are on trabectadin, same reason. So let's help each other. I look forward to hearing from you.
Added later....I guess there's too much information on here and I've gone on a bit. Sorry everyone.
BTW On Macmillan, I use the pen-name "Ramsbottom". It's a hilariously named small town in England where I'm from. Thank you for listening! R.
