Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Louise. Few questions for your doctor: - has the SUV uptake changed since the previous scan for the liver and lung lesions? The doctor might have never seen a case of the ASPS before (most of them haven't) and might be not aware that smaller ASPS mets show no SUV uptake at all - re. pericardial ...

D.ap wrote: ↑Tue Aug 18, 2020 9:09 am Hello Louise,

How big is the retrocardiac mass currently ?
How much has it grown from the time it was first seen?

It’s good to hear from you !😊

Hello Debbie,

It is now 3.8 x 5.4 x 4.7 cm from 2.8 x 3.4 x 2 cm.

Thank you!

Dear All, I hope everyone is doing fine despite the pandemic. I am sharing my doctor's message to me which I received today regarding my scans yesterday: "Hi, Centris Makati sent me the results of your PET-CT scan and I am actually very pleased with the results. For one, the forearm lesion has ...

Hi Louise, I have a question. Is your pazopanib treatment covered by the insurance or you have to pay for it? I have no idea how the system works were you are treated at. In my son's case they would cover Sunitinib but not Keytruda and we had to flight for it to be covered. Some other ppl managed t...

Hi All, Good day! Sharing with you the response of my oncologist when I suggested cryoablation and Keytruda: “Cryoablation may be, an option but I have no experience with it and don't know if it is, available. If you would like to try Keytruda your biggest obstacle is cost around 200T per treatment ...

Just an update on my case. After three months on pazopanib, my primary tumor size has gone down to 2cm2 from 5cm2. Based on what you all know/ experieced, is it better to remove the primary tumor or just wait until the Pazopanib stops working? Thanks Hello Louise So good to hear from you . So has y...

Dear Olga, Thank you for replying. The bone met in my arm measures 25x23x62mm. Is that considered small for the radiosurgery? And what sort of radiosurgery should I bring up to my doctor? I’m also thinking about cryoablation and will bring that up to my doctors too. I will also check if Keytruda is ...

Hello everyone! Just wanted to share the results of my latest scan. So one lung nodule increased in size but my onco said it is still stable based on the RECIST scale, all other mets are stable. Also I have one nodule in the liver that decreased in size based on the scan. My onco advised to reduce m...

Just an update on my case. After three months on pazopanib, my primary tumor size has gone down to 2cm2 from 5cm2. Based on what you all know/ experieced, is it better to remove the primary tumor or just wait until the Pazopanib stops working? Thanks

Hello Debbie, Hope you are doing well. The ulna tumor is around 4cm in diameter. They have not removed the tumor yet because they wanted to see if Pazopanib will have an effect to it. I'll go back after a month of taking Pazopanib to check if there are any changes. So far, side effects include fatig...

Hi Everyone. I’m Louise from the Philippines. 25/F I was recently diagnosed with ASPS. I had pain in my right ulna (forearm bone) for about a year and was initially misdiagnosed as muscle strain. I didn’t have it checked for months. This year (Jan 2019) when I did an X-ray it showed a lesion in my u...