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I've just been diagnosed with pelvic pecoma. Not able to start sirolimus for a little while due to other tests/scans/checks being done. I know this is super rare so I'm just keen to try and find people in a similar boat to share this journey :-)
Hi, I have recently been diagnosed with LMS of the abdomen and am being treated by the Royal Marsden. They have decided not to operate but have put me on letrozole as the soft tissue masses seem to love the oestrogen that is being produced. I am 72 so...
Hi I was diagnosed with leiomyosarcoma of my IVC in April 2024, had my 1st 3 month follow up at the royal marsden and they said I have nodules on my lungs but they don't seem concerned about them, I am absolutely terrified and can't stop worrying ...
I had had the arm tumour removed, very quickly within a few days thanks to the Macmillan nurse insisting I could not wait 5 or so weeks for radiotherapy on nhs and my company health insurance luckily covering it. Apparently tumour had grown so much in...
Hi there im Kim 35, with rare sarcoma tumour. Would love to chat to people who can give me some advice and tips? I’ve had my hysterectomy (as it was attached to my cervix) very rare! im starting preventative treatment of chemotherapy & radiotherapy...
Hi, does anyone have experiences on taking oral vinorelbine on low doses for treatment of desmoid tumor/desmoid fibromatosis? I have been offered this chemo as first treatment to shrink my tumor. Dr said it will be given in low doses so side effects...
Hi all! First time posting here, so apologies if this is the wrong place! My mum was diagnosed with a 28cm GIST tumour, and has been treated with Imanitib for the last few months. She's been on and off it due to various other infections getting in...
I have been experience pain and tenderness in the back of my thigh for about 4 years which gradually has gotten worse. I have been seeing the osteopath for adjustments and had an appoint with MSK but they all thought it was muscle. Recently started...
I am newly diagnosed with an aggressive liposarcoma in my arm. I can literally see it growing. Tests on whether it has spread are inconclusive. Each time I feel I could cope with it all I seem to get another bit of bad news. No treatment dates yet due...
Hi, I’m just messaging for a bit of advice, my husband is currently at home awaiting an appointment for a biopsy then we have up to 5 weeks wait for results. He has suspected leiomyosarcoma on his lungs and liver and a blood clot in his IVC, he is also...
