Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks Debbie - With all the scans, and subsequent contrasting agent, we need to worry and track kidney impacts. Testing for kidney function too.

Janice

And so it goes for 5 years - Alex continues to track and seems to remain without metastatic disease. I post to give hope to those recently diagnosed. We scan bone and brain as well annually. September 2018 Primary removed 3.4 x 2.9 x 2.7 cm from right thigh along with entire rectus femoris muscle LU...

So glad to hear Ellie is doing well. Thank you so much for the continued updates. With such a rare cancer - mom's like me continue to watch other's journeys and rely on those who have gone down the path ahead of us. Joy be with you and your daughter.

August 2018 tumor was removed and had been there for probably 2 years. Alex has never had trouble with iron levels - we have always been told we have more than enough. We have to get immunizations for pneumonia and supposedly have comprised immune systems...but we have always been healthy as it my 8...

Nay nay -

Check in with Doctor Wilky about the tumor donation.

https://breelynwilkymd.com/about/

Yes, the nodules are NOT confirmed mets and yes, it seems the scans are interpreted differently each time - both number of nodules as well as size. It bugs me that Kaiser lists his cancer as sarcoma vs ASPS as I wonder if the techs might look with a more discerning eye? I ask for the CDs each year s...

Hi all - My son continues to live life to the fullest - rock climbing and surfing between finishing up his senior year of college. Like Martin we continue to find the interpretation of the potential lung mets inconsistent: September 2018 Primary removed 3.4 x 2.9 x 2.7 cm from right thigh along with...

Thanks Olga and Bonni -

Full body MRI and it appears they looked at the bones...though it what detail I am not sure.

I have ask for the lastest scans and will in the future.

Thanks so much for for the protocol. What would I do without this site!

Janice

Brain MRI is clear as was the surgery site. However, it appears, since I have ask for the images on CD - they have been watching two nodules since September that they choose not to tell us about. "LUNGS: 2 mm subpleural left lower lobe lung nodule on series 4, image 150, stable. 3 mm disc-shape...

Bonni - Thanks for the response. I promptly sent an email to our doctor and the scans will be ordered. Thanks for the push. Now let's hope the doctor interpreting the scans truly knows what they are looking for - I do realize I should be looking over their shoulder - though not sure what I am lookin...

Hi Community - There may be a better place for this post. As I, and I am sure others, struggle with what to do with when this diagnosis touches our lives. I thought I would share a philanthropic avenue. I am sure there are other worthy researchers but Dr. Wilky formerly of Miami resonates with me. B...

Jussi I feel compelled to let you know how much I appreciate all your posts here and on the ASAP Facebook page. My heart is with you. Peace Janice

Thanks for the response Debbie. The sperocystsis has been handed down generationally in my family. Dominant gene. My grandfather, my mother, me and Alex. We all had our spleens removed at various ages. In Alex's and my case - around 7, after our immunities were developed and before the spleen was wo...

Hi all. My son Alex was diagnosed at 19 in 2018. The primary tumor had been in his thigh for almost 2 years. We had been assured it was a lipoma. We finally scheduled removal with a plastic surgeon only then to be made aware it was not a fat mass during the attempted extraction. On to the roller coa...