i have 2 small lung mets for angio sarcoma I’ve had 10 paclitaxol chemo and had a Ct scan on Monday and have another 10 chemo to go. I am scared the chemo doesn’t work and hasn’t stabilised as I am so exhausted all the time
Glad you are doing well … she’s awaiting hysterectomy but ct showed 2cm nodule on lug and 2 smaller ones ! She’s only 33 ! So I’m hoping she can get it under control and still have a quality of life … I see some people have them removed but the consultant said it would be chemo . Really appreciate you’re reply gives me hope although it will never go you can live with it for sometime x
If its uterine sarcoma they should test for hormone receptors on the tumour. Lots of people have long term stability with inhibitors if their tumour is estrogen/ progesterone positive...dont work for all but when they do the results are good. I rang sarcoma uk at first as chemo is first line for sarcoma and they explained things well and offered good support and advice as we know nothing early on. Theres a few good Facebook groups some for LMS and some more broadly sarcoma and some for alternative approaches. Doing our own approaches helps me feel in control x
Thanks for the message ! Do you know if this is something they check for or does she need to push for this ! Really appreciate any advice so Thankyou ! Have you had any experience of inhibitors ? How are you doing generally c
Hi they usually do identify this on histology report if theres been a biopsy. You can ask for a copy of the histology report. Mine wasnt naturally tested as it was in the pelvis but not uterine and they did it when I asked but mines negative. On the LMS page on fb theres lots of uterine lms cases but this site dont let me recommend. I wasnt on fb but joined for the wealth of valuable info gleaned from other people in the same boat. If you look at steve the moderator on here his wife was given an inhibitor I believe and has had 6 plus years stability after 2nd line chemo...look at his blog on here as I'm going from memory. Look for stories of hope as there are many and lots of treatment options going forward. Its important to know in these early weeks as a diagnosis brings grief associated with the life change and stories of hope help a person through it. I was petrified initially but have a different outlook now and I feel a lot better in myself xx
