Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I am thrilled to share that Sean's October, 2007 followup report from Memorial Sloan Kettering is normal. His CT scans remain "clean" and his pulmonary functioning and blood work remains normal. His next followup is in six months!!!

Camilla,

What a wonderful testimony! Thanks! And you are right about surfing the internet...there is a lot of doom and gloom and speculation...it takes awhile to sift through the factual, valid data.

Elaine

Charity,

Wonderful news. Thanks for the update.

Elaine

Hi Scott,

Is the blockade treatment recommended by Dana Farber as the next phase of the GVAX vaccine treatment?

Elaine

Sean recently had a followup and the results/scans remain CLEAN per his oncologist. He is to return to Sloan-Kettering, New York City in three to four months for a followup. Sean has never had radiation or chemo for treatment. Sean has had four surgeries: primary tumor excision (March, 2003), surger...

Thanks for your perspective. I think the strength of this website is that each can provide his or her unique experiences. The procedure I explained is in "non-medical and non-scientific" language (except the diagnosis listing), so I'm sure it may sound confusing. During this treatment, I w...

It's great to hear from you... In answer to your questions...the doctor's service is called osteopathic manipulation. There are several diagnosis listed on the office visit receipt: tendosynovitis (ribs), thoracic strain/sprain, somatic dysfunction thoracic, somatic dysfunction pelvis, somatic dysfu...

Sean had a followup sooner than anticipated due to increasing pain on his left side where he previously had the open thoracotomy. Symptoms included tight breathing, a swollen feeling in his chest, tingling, and numbness. He had these symptoms off and on since May, 2006 (surgery date). MSK immediatel...

My son recently had a followup. No evidence of ASPS. All bloodwork within normal range. We continue with three month followups.

Great comments, Olga. I consistently ask my son's doctors about brain mets and whether he should have an MRI as a followup protocol. Especially, since his primary tumor was on the scalp! His doctor consistently asks Sean whether he physically "feels" a lump and Sean has a comprehensive &qu...

:)Dear Paul, It is good to hear from you. My son's doctors (from Memorial Sloan-Kettering Cancer Center in New York City, NY, USA) (3-1/2 hours one-way from our home) believe that an anti-angoigensis ??(stopping new blood vessels) approach is a known positive treatment at this time. The hope is an A...

Hi Everyone, My son was diagnosed with ASPS April, 2003. As many of you already know, he had an open thoracic surgery on his left lung during May, 2006 at Memorial Sloan Kettering in NYC due to a spontaneous pneumothorax (lung collapsed to 65% capacity, recognized immediately during a routine follow...