Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Sorry two weeks on one week off **

Hey debbie 5 cycles is 3 months. 2 months on one week off. Slight reduction to start with now it’s stable, not sure how much it reduced the doctor said it was a slight reduction. No the doctor did not perform a biopsy on swollen lymph nodes as they said the steriods would resolve and they did. This ...

Hello, I just wanted to update you all I have had 5 cycles of anlotinib and I am currently on the 6th cycle. Feeling much better, no longer breathless, cough is hardly there, no need for oxygen, it was 86 now 98-99. able to do day to day things now which I am so happy about. Scans show stability but...

Hi Olga Had an appointment with my oncologist today she is going to try push for cryoblation and find a surgeon for me but in the mean time I’m going to look aswell. She told me there may be a new trial coming up which is phase 1, not sure on the drug name yet. Do you think I should try and eliminat...

Hi Olga sorry for the late reply

They are saying they can’t do surgery as there’s over 50 tumours in the lungs, they can’t give me anlotinib or cediranib because the tumours are too close to blood vessels, now I have no idea what to do I am sooo scared

I havnt been given antibitocs I do cough up flem but it is clear.

Hi Ivan No inflammation totally healed I’m really breathless right now I can’t exercise and I have oxygen at home if I need it I do get breathless going up the stairs and even getting up to go to the toilet it’s really got bad, one year ago I didn’t even have any symptoms, so you think this could al...

I’m 27 now and was diagnosed in sept 2020 at 25 years old

Hi Geeta, Welcome to the forum .😊 When did you embark on your high fiber diet ? What kinds of foods have you incorporated? Did your 30 sessions of radio therapy result in any skin damage issues ? One last question, how old are you ? Hi Debbie sorry for the late reply, I had lots of lentils chick pe...

Hi welcome to our board. I am sorry to hear re. progression. It is a hard news to get. Where are you located? how many of the lung mets are bigger than 20 mm now? Hi Olga I’m sorry for the late reply I am located in England, there are roughly 4 above 20 mm now closer to 30-40cm I have just been tol...

Hello, I have spoken to a few people from the asps group on Facebook I just thought I’d come on here also as I can have all responses saved so I can show my oncologist too if I need any help! I was diagnosed in September 2020 with an 8 x 6 cm tumour in my right leg on the hamstring, it was removed w...