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 gemcitabine 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 trabectedin. 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 trabectedin seems to be holding the cancer as it is. I've had 15 (actually 14.5 because of one mix-up) cycles of trabectedin 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 41 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 trabectedin 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 trabectedin, 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.
Hi Ramsbottom
Thank you for sharing, I know how difficult it can be to find someone in a similar position as my wife has Leiomyosarcoma and if it were not for here I suspect I might never have found anyone with similar but even so there are differences too.
On the trabectedin front, not something we have experience of since my wife had Doxyrubicin and then Gemcatabine and so far her cancer became stable so we got good news. I did however use the search tool here and found this
<<hugs>>
Steve
Thank you I never thought to do a search I found a chap called Mick who posted three years ago (trabectadin and myxoid sarcoma) but no idea if he is still with us. Thank you for your reply its much appreciated
I was in the remission 3 blessing years, until this year while I have discovered that it wasn't remission, that I have never been in any remission. My cancer had metastisized immediately before surgery, right after radiotherapy.
Now, it's abdominal sarcoma. Of course everyone said it's terminal stage 4 no chance to pass 6 months, simply because they have seen this and everyone passed away quickly.
Medical gaslighting, intentional or not, has overpowered me. Telling me that liposarcoma doesn't respond to chemo yeats ago and the same time, today, offering me unsuccessful treatments pains me. I would like to live longer than 6 months, but I am not going to lie to myself.
Sarcoma is neglected cancer, there is no trials, no research, only death penalty in comparison to others stage 4 living their long lives, you know 5 years, 8 years and 10 years (making their days count), when us we've got prognosis like brain tumors and hospice bed.
I haven't spoken with my kids, I haven't finished my work, there is no time, because there is no cure for sarcoma.
My husband was also on Trabectadin for sarcoma which is spreading rapidly. They stopped it after 4( well 3 and a bit as one didn't go through properly ) as a scan showed " significant progression". I tried to argue it was too soon as we were told it can take a few sessions to kick in but they just stopped it abruptly. He is now on gemcitabine and another I can't remember the name of. He tolerated Trabectadin quite well although lost apetite and said food taste funny, he is eating better now but its early days to see if the new chemo works. He was told the prognosis has gone from 18 months to 2 years down to less than 6 months over a period of a few months.
You are dead right about sarcoma being neglected as its much rarer than other cancers. Interesting as I go to a small carer group and there are 2 of us out of 12 that have partner with sarcoma.
Malengwa, thank you for your reply. It's disappointing that they stopped trabectadin so soon, I had read in some medical papers that it takes 7 or 8 infusions before it starts to take an effect. Fortunately on that occasion I was listened to although I think the consultant (who I no longer have) was on my side too. I have never had a prognosis they won't give me one. I am 41 months post diagnosis and my cancer is stable after 15 doses of trabectadin. I have been told this is my 'last line' treament, there's nothing else once this one is done. But if trabectadin didn't work for your husband then I guess here's no point persisting with it now.
Oh yes and I have only had 14 and a half infusions really because one ran out of time on the bottle due to a mix up in pharmacy. So they just threw the drugs away. Heartbreaking.
My very best wishes, thoughts and prayers to you both.
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