Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks for your responses and apologies for delay in responding. I was a little overwhelmed with the responses initially so didn't know how to reply. Anyway, since I've last posted there has been further disease progression and I am now symptomatic from the tumours in my lungs, with breathlessness a...

Hi Jen I am replying in response to your coughing fits. I've had coughing fits since March this year. Initially we just thought chest infection but sadly not, my oncologist says I am now symptomatic from the tumours in my lungs. Some have grown around my trachea so are pressing on that which he thin...

Thanks for the additional information you both gave. I put the questions to my consultant who has spoken with Prof Judson. He does not advocate surgery and said he doesn't know of any evidence that soft tissue mets respond differently to cediranib. As regards to mets growing more aggressively when y...

Dear Bonni Thank you very much for your detailed reply. I was also diagnosed age 19 (next week will be exactly 10 years since my diagnosis). I had surgery to remove the primary on my right thigh, followed by 6 weeks of radiotherapy. In 2009 routine scans revealed multiple lung mets on both lungs. I ...

Hi I've just consented to go on cediranib and have been reviewing the helpful posts about side effects. However, just wondering if people have managed to continue working whilst on the trial? I appreciate I may be on placebo at first and even if on trial drug the side effects are different for every...