Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thank you so much Olga. This is really helpful.
🙏

Immunotherapy?

Hi Olga,

The exact same query. My son 26y is under follow ups for last 10years with no significant interval changes in nodules in his lungs.

We are in a dilemma reg the vaccine?

Thankyou Bonni Hess .
My son is going to be 23 this July Debbie . He was 15 y 10 months at the time of surgery .

Thankyou for the information and link.
Will keep myself informed .

With best wishes and hope for everyone.
Anita

Hello Olga ,

Thankyou for this valuable information . It will be of great help to me.


Gratitude,
Anita

Hello all, This is an amazing group . Debbie the info you shared is an eye opener. Doctors here never suggested a bone scan. And I am going to reconsider the muscle pain in my son's thigh . Bonni read it and am so happy that your daughter is doing good with cediranib. Doctor has not given it a go fo...

Hello everyone , My son was Dx'd in May 2011 for ASPS . The tumor was with his abdominal wall in the lower part of the rectus . It was surgically removed with good margins in May 2011. It was 4x5x3.5cm. Yes it was pathalogically tested . It had occasional mitosis and Mib labelling index <2% . Resect...

Hello Debbie Yes the tumor was surgically removed with good margins in 2011. It was 4x5x3.5cm. Yes it was pathalogically tested . It had occasional mitosis and Mib labelling index <2% . Resected margins were free of tumor. We had got PET done before the surgery and after a year . No other part had s...

Hi Mark and all, This is Anita from India . My son was diagnosed with ASPS with his abdominal muscle in 2011. He was all of 16 then. He has multiple subcentimetric nodules in both his lungfields not sure to be mets . They have reduced in size and number in last two scans and is veing evaluated on ye...

Hello everyone ,
My son had asps with his abdominal wall which was removed . He has pain in his thigh since last 15 days , cant see a swelling or lump ?
Can asps recur in different location ?

Best Wishes