Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Yes, I’m still on trial and seems like my doctors don’t plan to change anything for now. I’m planning on talking with them about any other options, but for now I’m just trying to do my research as well.

Hi everyone, hadn't been here for a while but I'm coming with some update. So my last scans shows growth of lung mets. That's the exact report which I got yesterday: 'Numerous lung metastases have marginally enlarged, for example left lower lobe measuring 1.1cm previously 0.8cm in June, and right lo...

yeah i had pelvic and abdomen CT scan on the beggining of my journey and one now on 9th May - came out clear. last time i had way longer period, this month i don't have it at all - i'm just worried to not dissapear totally. Also see lots of skin problems like acneas etc which looks typical hormonal,...

Hello, I’ve been absent for some time, but I’m back now with some update. I’ve started Anlotinib trial as planned without bigger side effects, with the time I’m experiencing sore mouth and throat, rare stomach problems and diarrhoea, however I’m still positive and still think that’s better than side...

yeah I'm trying to stay hydrated and walk more but not pushing myself too much either. From what they've said to me last time probably it's lymphatic fluid stays there and that's why I need compession socks to pressure it more and then hopefully will go away. I'm happy to hear that u think that way ...

Doesn’t matter the timeline for growth, just 20% bigger = stop trial, no matter if it’s in 3 weeks or 3 months or so. Yeah those few month feels already like few years to be honest, so many informations and questions around yet not many options, however now I’m back with clear head after all that pr...

So basically now I will have scans every 3 weeks + all blood samples and echocardiogram this will be until 7 cycles (one cycle of treatment is 3 weeks) and then scans will go every 12 weeks if everything will go as planned. All trial rules are very strict starting with who can take part/ your overal...

Hi there everyone! I found this forum by facebook group and decided to post my story as well, hope u guys don't mind but I'm total newbie if it's about all sarcoma, drugs etc and I know only few things from my doctors and internet. Anyway.. I'm 21,I found lump in my left lover leg in March 2021, the...