Sean from Pennsylvania - Dx 2003

[Olga]

Elaine - we are happy to hear this good news! Have a nice winter...

[Elaine Anderson]

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.

[Bonni Hess]

Dear Elaine,
Thank you for sharing this wonderful news! We are SO VERY happy for Sean and all of your family For all of us who share this very challenging battle with this unpredictable disease, Sean's apparent miraculous remission and continued stabilization of his disease provides great Hope and strengthens our resolve to keep fighting. We are so deeply appreciative of your continued updates and of your strengthening support and special caring for the rest of us in the ASPS Community. Please give Sean a special High 5, a BIG hug, and our best wishes for continued GOOD NEWS. Take care, and may all of your family enjoy a very happy and healthy year ahead.
With special caring thoughts and strengthened Hope,
Bonni

[Elaine Anderson]

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 year! Thank God!

[Bonni Hess]

Dear Elaine,
Thank your for your very thoughtful update and for sharing this wonderful news. Please know that we are sharing your great happiness, relief, and the strengthened Hope which Sean's continued disease stabilization/remission provides. Please give him a special hug, congratulations, and best wishes from all of us Hesses. We will look forward to your continued GOOD NEWS! updates.
Sharing your immense relief and joy with special caring thoughts and continued Hope,
Bonni Hess

[Elaine Anderson]

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 determine what is best for each of us.

[Amanda]

dearElanine
I am so glad to hear this and it gives me and i am sure others a lot of hope <3

May i ask :/
Did he do chemo and how many things were in his lungs and was it only in his lungs no tumor in another area?
I am kinda new here so i dont know the whole story, hehe

Again *YAY* this is wonderful!!!!

In healing hopes for all!

Amanda

[Elaine Anderson]

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 and established clear negative borders around primary site (there is minor scarring). All tissue, muscle etc. was clear of ASPS. MSK was the third hospital/oncologists we dealt with and decided to stay with them as MSK is a world leader with cancer treatment and "rare" cancers. They have experience with ASPS and sarcomas. May, 2003 the oncologist recommended no experimentation (no chemo, no radiation) at this time. Absolutely nothing else (except the surgery), and to go home and live your life. I suppose this was due to the size of the primary tumor. There were densities that appeared on the CT of lung (May, 2003) but MSK wanted to monitor the densities and establish a baseline. September, 2004, a glaring new density appeared on CT of lungs and a 3mm ASPS met was surgically removed from lung. The surgeon said he "felt" with his fore finger and thumb other small "tumors" and thought he "saw" with VATS small mets in the other lung. Again, oncologist recommended no further treatment at this time (September, 2004). Believe me, we just wanted to do something! May, 2006, my son had a spontaneous pneumothorax occur and walked around with it for a few weeks (he knew something was wrong but kept discounting it). At his May, 2006 CT scan the collapse was obvious and the MSK pulmonary team speculated that a tear occurred due to the growth of mets in "pluera" (lung lining). Four days later Sean had an open thoracotomy. (The MSK research team was ready to obtain fresh ASPS tumor, I asked if there would be a vaccine developed from fresh tumor by MSK, and I knew where I could send the fresh tumor if need be because of the iCureASPS website). Miraculously, there was absolutely no ASPS mets located. The surgical team was shocked. We remain diligent with followups. My son was diagnosed at age 13, recurrence at age 15, and is now 20 years old, a college student, works part-time, and has had a steady girlfriend of two years. Also, we pray faithfully. Best wishes to all.

[Bonni Hess]

Dear Elaine,
WOW!!!!! This is incredibly WONDERFUL news!!!!! Thank you for once more reaching out to share the joyous news of Sean's miraculous scan results and continued remission with all of us on this Forum. My happy heart deeply shares Sean's and all of your family's immense relief and joy, and embraces your sustained Hope. Sean having achieved apparent remission of his disease without any kind of systemic treatment demonstrates the great difficulty which we all face in making the best decision regarding treatment of this unpredictable disease. I do continue to wonder if there are two types of ASPS ( a theory that was being promoted by the MSK researchers five years ago at the time of their development of the now abandoned Peptide Immunotherapy Vaccine) since several ASPS patients who have never undergone any kind of systemic treatment have never had metastasis beyond their lungs, and other ASPS patients like Brittany developed extensive metastasis without systemic treatment. Although definitive answers about the best treament approach continue to confuse and elude us because of the variations in individual ASPS patients' disease experience and treatment responses, as you have stated so well, "It is through the sharing of our knowledge and our experience that we can" (try to) "determine what is best for each of us." Please know how deeply grateful I am for your continued special sharing, caring, and support, and how VERY happy and excited I am for Sean and your family. Have a wonderful year ahead bright with the continued Hope that Sean's fantastic scan results have brought to your Lives.
Reaching out to embrace you and Sean with happy hugs, special caring thoughts, best wishes for continued GOOD NEWS!, and ongoing Hope,
Bonni

[Elaine Anderson]

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

[Ivan]

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

Excellent, thank you for keeping us up to date.

[Bonni Hess]

Dear Elaine,
It is with immense joy that I read your update with the WONDERFUL!! news that Sean's annual scans were clear and that he continues to be NED (no evidence of disease) and everything is normal . For those of us who share this difficult battle, the word "normal" on the radiologist report is certainly the greatest gift that we can receive. I am so deeply grateful for your thoughtful sharing of Sean's continued VERY GOOD NEWS!! which provides so much inspiration and Hope to all of us in the ASPS Community. Please know how very happy I am for Sean and your family, and know that I am CELEBRATING!! this incredible victory right along with you. This is a wonderful way to begin the New Year, and my very best wishes are with Sean and your family for a most Healthy and Happy year ahead.
With happy hugs, happy high fives, happy thoughts, happy wishes, and continued Hope,
Bonni

[Ivan]

Elaine emailed us - everything is still clear for Sean.

Is this a case of seemingly spontaneous regression?

[Bonni Hess]

Dear Ivan
Thank you for sharing this wonderful news from Elaine. I am so happy for Sean and his family . It is so very encouraging for all of us to hear about sustained and continued disease stability. I have raised the question before, but based on my almost ten years of observations of several patients who have had "miraculous" sustained NED or stability including Sean, Amanda Minderlein, and another patient who prefers to remain anonymous, it seems that the younger the patient at diagnosis, the more likely that this will occur. Also, based on those same observations and some information from the now defunct MSK ASPS Peptide Vaccine research, I continue to feel that there are two types of ASPS in which one type does not metastasize beyond the primary at all, or metastasizes only to the lungs as yours and several other patients has, or the more aggressive and widely disseminated type that metastasizes to areas throughout the body like Brittany's heartbreakingly has. So many questions, so many unknowns, and so few definitive answers, but we will continue researching and searching.
Sharing the special joy of Sean's continued good news with much happiness and continued Hope,
Bonni

[Olga]

Bonni - Amanda Minderlein is not the right example of the suspected spontaneous regression as she had the following:
first chemotherapy regimen AIM, then bilateral lung surgeries to remove active lung mets, then recurrence in the lungs and the second chemo regimen with the vinca alkaloid drug Vinblastine + high dose Celebrex that was applied continuously for about a year and after the vinca drug was stopped she remained on the high dose of Celebrex (NSAID) and on this regiment her lung mets regressed. So much for the spontaneous - I would say the response to the chemotherapy+surgery combo is likely here, but her younger age might be the reason for the response.
Asfar as I know, Sean is the only known to us case of the sustained NED with no treatment after being previously diagnosed with the tiny ASPS lung mets by the surgeon removing one of these and confirming the ASPS histologically.