Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan,
Your progress is amazing and so glad to hear all scans have come back with no concern. What an amazing feeling that must be. Thank you for keeping us updated, it gives hope to those in the thick of it.

Well, I need cortisol to rise while I'm asleep and I can't readily accomplish that. My sleep has been improving and I hope it to be back to normal in the next few months.

Naynay wrote: ↑Tue Mar 02, 2021 2:08 pm Ivan,
Your progress is amazing and so glad to hear all scans have come back with no concern. What an amazing feeling that must be. Thank you for keeping us updated, it gives hope to those in the thick of it.

It's been a long road. Your odds of making it today are so much higher than 18 years ago when I was diagnosed.

Dear ASPS friends,

Happy to report that my latest scans are clear. They were insanely delayed since last October when I had my last round. After a huge struggle, finally completed them end of June. Brain, abdominal, cardiac MRI and CT scans is what I had done. While I don't have the reports in hand, abdominal and cardiac MRI reports are in good shape as per the doctor.

Ivan and family,

Incredibly good news !
Could you remind us of the size and location of your primary and when it was resected?
Also when lung tumors appeared ?

Thank you in advance.

Love the Pearsons ❤️

The full story can be found in the first post of Ivan thread.
Dx in 2003.
The primary was very small. Right arm, 18 mm when resected
First Lung mets were found few months later. Continued to slowly increase in size and number till the first laser assisted resection by Dr.Rolle in Germany 2 years later.
Dr.Rolle retired now and he and Ivan are the best friends for life, in frequent contacts about the life and nature

Amazing news! You are my inspiration!

Olga wrote: ↑Wed Aug 10, 2022 8:06 pm The full story can be found in the first post of Ivan thread.
Dx in 2003.
The primary was very small. Right arm, 18 mm when resected
First Lung mets were found few months later. Continued to slowly increase in size and number till the first laser assisted resection by Dr.Rolle in Germany 2 years later.
Dr.Rolle retired now and he and Ivan are the best friends for life, in frequent contacts about the life and nature

Thanks for the reminder , Olga.
18mms was a fraction of Joshua’s 60mm right upper thigh tumor but Ivan’s lung Met numbers were comparable to Joshua’s numbers, that were removed by Dr. Rolle .

I wonder how when the primary sizes were so different , but the lung metastasis ended being pretty close in numbers ?

It is suspected that ASPS metastasizes very early in course of its progress, and the mets just stay dormant at the sites they attach themselves to i.e. lungs where the single cells are easily trapped at the dead ends of the twisted capillaries. The primary grows in the meantime, but the cells are still dormant, multiple, staying undetected due to a small size/inactivity. They often start to grow when the primary is resected or when it gets pretty large and the growth factors are elevated trough out the body.
This is why even localized ASPS is staged Stage 3 as the presence of the multiple but undetected mets is assumed.

So happy for the good news Ivan!

Hello everyone. I continue to be in good health, and my scans are NED.

Hello Ivan ,

That’s really wonderful to hear !so incredibly happy to hear of .
Love ,

Thanks for the positive update!

Ivan wrote: ↑Tue May 30, 2023 6:08 pm Hello everyone. I continue to be in good health, and my scans are NED.

Congrats Ivan! Love to hear that! Thanks for the update.

Once again, I had my latest round of scans. Everything is NED. In a few months, it will be 4 years since I've stopped PD-1 therapy in Feb 2020.