Sean from Pennsylvania - Dx 2003

[Bonni Hess]

Hi Olga,
I should have better clarified and further explained what I said since I didn't intend to indicate that Amanda had "spontaneous regression", but rather that after several different surgical and systemic treatments she has been able to achieve "sustained NED or stability" for the past several years. The reason that I included her in my observation about young patients seemingly being able to better obtain sustained stability, is that other patients who were diagnosed at an older age than Amanda was who have also undergone similar surgical and systemic treatments have unfortunately not had the sustained stabilization of their disease that Amanda has had. Thank you for providing the clarification and information about her treatment history.
With special caring thoughts and continued Hope,
Bonni

[Elaine Anderson]

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 to have a followup in another year. What a gift! I frequently visit this website and appreciate the sharing of knowledge and experience. Know that my thoughts and prayers are with everyone.

Elaine (Sean's mom)

[Olga]

Elaine, thank you very much for the updating. It is amazing to hear that Sean's status is now listed as "cured" after he had been found to have small lung mets from ASPS at some point. I wish him all the best, in any event this diagnosis and all associated with it primary/lung surgeries and follow ups are very traumatic and he had to go trough it in a very young age, so there are more invisible scars so to speak.
I hope that the people just diagnosed read this post and know that there are cases with the less aggressive ASPS disease. The people with ASPS that are doing fine just have less reason to participate in the boards like this and it might give a wrong impression that ASPS is inevitably fatal. It is not so and part of the people might be just cured by a surgery alone.

[Bonni Hess]

Dear Elaine,
What a wonderful way to begin the New Year with this fantastic news! Thank you for sharing it with the Board, and CONGRATULATIONS!! to Sean and all of your family. Sean now being considered "cured" almost nine years after his initial ASPS diagnosis is a source of great Hope and encouragement for everyone who is fighting this challenging disease. It strengthens my observations and belief that there are possibly two different types of ASPS and definitely less aggressive forms of the disease with which sustained long term, and in some cases permanent, stability and remission can be achieved and sometimes with no systemic treatment.
Please give Sean a celebratory High Five and happy hug from me, enjoy a most Healthy, Happy, and Scan Free New Year, and know how VERY much I am sharing the special joy of your VERY good news .
With happy smiles, special caring thoughts, best wishes, and continued Hope,
Bonni

[Elaine Anderson]

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

[Bonni Hess]

CONGRATULATIONS!! and Happy and Healthy 2013 best wishes to Sean and all of your family dear Elaine Sean's very successful outcome to his ASPS battle provides great and much needed Hope to all of us in the ASPS Community. Thank you so much for your continued thoughtful shared updates, special caring, and deeply appreciated support.
Sharing your great joy with much happiness, and reaching out to embrace Sean and you with happy hugs, warm friendship, and continued Hope,
Bonni

[D.ap]

Hi Elaine and family
Could you clarify for me that the only tumor found on Sean was in his lung?
Thank you
With continued hope of Sean being cured
Debbie and family. Joshua's mom

[Olga]

Debbie - if Elaine does not see it I can answer - I know them very well, they became my friends in all the years we are dealing with it!
The primary tumor was on scalp above the ear. That was removed. No distant mets detected. Sean had the usual surveillance scans and at some point he had a pneumothorax - his lung collapsed, from the unknown cause. He had to have a surgery eventually to find the cause as it would not heal by itself. The VATS surgery was performed so the thoracic surgeon went into the pleural space - the space between the lungs outside surface and the pleura that surrounds the lungs - to look for a tear. He found the tear in an apex of the lung (Sean was tall and thin and it is a rare but well known case when the the air bubbles at the top of the lung can be torn by the sharp inhaling when its walls are very thin - like it often is when the kids grow to fast) but he also saw multiple tiny ASPS mets on the lungs surface - and told to the family after the surgery about it. Some time after the small nodule was found on the CT scan and it was removed by VATS, was confirmed an ASPS met. But the surgeon said saw no mets at all during the surgery this time, no mets were found by the follow up scans either, and till now - and hopefully newer.
Elane - feel free to clarify if I mixed something up.

[D.ap]

Olga and Elaine
So the primary site was in the scalp area? The metastasis was to the lung area/pleura area and successfully cleared by surgery?

Thanks for the quick response
Sincerely
Debbie and family

Ps Sean was how old at the time?
Thanks again

[Olga]

The met was in the lung. Sean was 13 when Dx.

[Elaine Anderson]

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 removal of primary tumor from scalp was at age 13. He had a met (2mm to 3mm) to the lung at age 15, surgically removed (VATS) and confirmed in the lab. The surgeon stated there were other mets at that time, but did not remove. There was no additional treatment. At age 16, Sean had a spontaneous pneumothorax. Some on his medical team suspected it was due to a met tearing the lung. His oncologist, Dr. Paul Meyers, consistently stated there was no evidence to support that a met caused the tear. (A voice of reason at a highly stressful time). Sean had an open thoracotomy, with a MSKCC team waiting for "fresh" ASPS to study and potentially make a vaccine. The miracle is there were No mets found during the extensive open thoracotomy. The surgeon was shocked. Know that we are Christians and when Sean was diagnosed, I followed James 5:14. We are fortunate to have a great medical team and the support of family, friends and employers. This Forum is an excellent source of sharing and support. Olga and Ivan, thanks for your unconditional efforts. Best wishes to all.

[Ivan]

Awesome news, congratulations. The best holiday present

[Bonni Hess]

Dear Elaine,
Thank you for sharing the great joy of Sean's wonderful scan results What a joyous way to begin the New Year for Sean and your family with the knowledge that he has continued disease stability and the special happiness and strengthened Hope I know that brings to all of your hearts. Please give dear Sean a special High 5 from all of us Hesses, take care, and enjoy a most happy, healthy, bright, and beautiful New Year.
Reaching out to embrace you with happy hugs, special caring thoughts, warm friendship, and continued Hope,
Bonni

[D.ap]

Sean and family

Special thanks for the great news
Prayers for continued good news

Debbie and family

[Elaine Anderson]

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 Anderson