Cure Alveolar Soft Part Sarcoma International (iCureASPS)

It is with great happiness to share that Sean's October, 2014 followup testing at Memorial Sloan Kettering was normal. His scans, blood work, and "hands on" physical were fine. His next followup is in one year. We all had big smiles and we are very blessed. Best wishes to all. Elaine Ander...

It is with great joy and happiness I am sharing that Sean was told to return in a year to MSKCC!! He had a comprehensive follow up last week. Olga, thanks for contributing. Yes, Olga and I have become close through the years and knows our story well...Sean is 24 years old. Sean's first surgery and r...

I want to share my "lessons learned" from almost five years of working this angle. An important distinction is that we live in the United States and that we reside in one state and my son gets medical care from Memorial Sloan Kettering which is another state. We always select a "natio...

I am thrilled to share that Sean had his annual followup at MSKCC and all is well. His doctors also had big smiles. Sean will stay with an annual followup. Sending my thoughts and prayers out to the Cure ASPS fellowship... Elaine

Sean's status is cured. His annual followup results are excellent (from yesterday, January 10, 2012, Memorial Sloan Kettering, New York City, NY). Almost 9 years out from initial diagnosis. Thank you, God. Although there was discussion to extend the length of time for his next followup, Sean prefers...

Sean had his annual followup at Memorial Sloan Kettering, December, 2010. His scans remain clear and all other tests were normal. My thoughts and prayers are with all...
Regards,
Elaine

Awesome!

A Summary: March, 2003, removal of a "mass" on scalp above ear by a local Children's Hospital, the Hospital requested Memorial Sloan Kettering (MSK) to diagnosis mass (this was the 2.5cm primary tumor). May, 2003, MSK performed a major head and neck surgery with sentinel/lymph node mapping...

Sean's October, 2009 followup results are "free of disease" :) His next followup is in one year (unless there is a concern). We are truly Thankful! Know that I access this website often, and appreciate all postings. It is through the sharing of our knowledge and our experience that we can ...

Sean had a 10 month follow-up at Memorial Sloan-Kettering. His scans remain clear, bloodwork perfect, hands-on physical revealed nothing unusual. Sean begins college classes on Monday, and I am a tax accountant, so we scheduled his medical exams slightly sooner. Sloan Kettering said see you next yea...

Hi Rani, Sharing our experiences are so important. I think the best thing is to be your own advocate. It seems prompt surgery is very effective (from my son's history). There are medical publications and expert doctors identified throughout this invaluable website to help guide you to make the best ...

Sean's six-month followup results were excellent, clean scans, perfect bloodwork, nothing suspicious. Sloan Kettering said see you in one year! He was diagnosed five years ago.

You have located a great resource. This website provides data from different perspectives and experiences. Keeping informed and being your own advocate is most important with determining the best treatment. If you have any questions, please let me/us know!

Sincerely,
Elaine
Unionville, PA

Thank you for sharing your experience. My son, Sean was diagnosed five years ago and he has been a patient at Sloan Kettering. Their surgeons are excellent. However, as his insurance coverage changes and he moves from pediatric oncology to adult oncology, we have been considering Fox Chase Cancer Ce...

Scott,

What great news! I truly appreciate your update.

Elaine