Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Anthony's tumors have started growing again. The largest has grown 5mm in three months. 1.9cm to 2.4cm.

I am sorry. I seem to be at a loss for more words.

Dear Scott,
Thank you for the update. We are so deeply sorry and saddened to hear about the increased growth in the size of Anthony's lung mets during the past few months. We had been so very Hopeful that the GVAX Vaccine had worked to permanently stabilize the progression of his disease. Did he have any other scans in addition to the chest CT? Are you considering any kind of a systemic treatment at this time, and if so, which one? Please know that we are thinking about Anthony and your family and holding you all very close in our hearts, our most caring thoughts, and our special prayers. Take care and keep us updated as you are able.
With special caring thoughts and continued Hope,
Bonni

I'm sorry to hear the latest news, but try to stay encouraged. The GVAX might have helped stabilize for quite a while.

Because of the clonal variation and the ability to acquire new mutations, all ASPS warriors have to be in this for the long haul. One small population of cells develops a mutation that makes it resistant to injury by chemo or immune attack, and then we get progression after a long period of stability. Also the dormancy issue is strange in ASPS - it can start growing and then start again.

There has never been a better time for the development of new agents.

Update:
Long time no write,
Anthony is still alive and kickin. He has switched to a doc in Colorado who of course knows nothing about this cancer. Doc says slight growth in tumors but Anthony did not get the report so I don't know by how much.

Anyhow, I noticed that there has been a lot of news about a clinical trial that was the first to extend the life of melanoma patients. As many know melanoma and ASPS have much in common. So, I thought I would point out that the drug used in the melanoma trials, ipilimumab, is the same one Anthony had for follow up after the vaccine trial.

Anthony only took the drug for a few months, but the fact that with the 100's of mets in his lungs he is still functioning well enough to do remodeling work is something in my humble opinion. Side effects we observed were minor by cancer treatment standards.

http://harvardscience.harvard.edu/medic ... large-clin

Hello
I am so glad to hear he is doing well and going srtong! I will read up on the drug as i am sure others will also.
This cancer seems to grow for the most part slow and if there is any positive in having this dam cancer that is it. I was told that by an Onc and i agree...
Tell him i said *YAY* and take care and please post more often so we can hear how he is doing and smile

Thanks for the update - this is great to hear.

It looks like there is an NCI trial with this drug that is open in kids. We would definitely consider it - but will finish out her current trial and probably do a cryoablation.

It looks promising that ipilimumab will be FDA approved - possibly this year or early 2011? (and potentially available 'off-label' from one's hospital pharmacy). But it looks as if there is already a shortage....

For everyones info ipiliumiab is FDA approved for the treatment of melanoma as Yervoy.

I would encourage research into this since melanoma and ASPS have many commanalities.

Dear Scott,
It was so good to hear from you again . Thank you for sharing this important information. I just heard a report on the news this morning about the encouraging success of Yervoy for malignant melanoma patients being treated with it, and I too thought that it is something which should be researched for ASPS because both malignant melanoma and ASPS are often included in the same Clinical Trial protocols due to their common make-up and similarities.
I Hope that this finds Anthony doing well and with stable disease. Is he currently on any kind of systemic treatment? It would be deeply appreciated if you could post a brief update on the Board when your time and schedule allow as it has been a year since you last updated. In the meantime, please tell Anthony "HELLO " from the Hesses who shared time together with him in Boston during his and Brittany's GVAX Immunotherapy Vaccine Clinical Trial in 2006. Take care, know that my continued special caring thoughts and best wishes are with Anthony and your family, and keep in touch as you are able.
With deepest gratitude for your special sharing, and with healing wishes for Anthony and continued Hope,
Bonni,

Scott - when Anthony had this drug - ipilimumab - after the vaccine trial, was it on a clinical trial or by a prescription?
Although it looks interesting, I really have no idea how would any doc prescribe it to an ASPS patient without any evidence it works in a positive way in ASPS. Especially taking into the consideration that 10-17% of patients had immune-related adverse events of grade 3 or higher severity, with 2-3% of these events resulting in death...It does not look like it is avail. on a clinical trial for a non-melanoma patients.

It is with a heavy heart, that I inform all of you that Anthony passed in his sleep on June 18th in Colorado Springs, CO. at the age of 23.

Our family thanks all of you who have been so gracious in your support of us and your efforts to find a cure.

Sincerely,
Scott Olsen

Scott

You are an angel to post to us all during a time that I could only imagine to be an incredibly hard , hard time .
From the Joshua P family to yours, our most sincere and heart felt condolences .

This is our son.

Josh from Kansas - Dx Sep 2012


Love
Debbie

Dear Scott,
As I just wrote you in an e-mail after I received your very thoughtful heartbreaking personal update:
It is with the greatest shock, immense sorrow, a deeply broken heart, and endless tears that I just read your devastating update. Thank you for somehow finding the emotional strength and energy in the midst of your profound grief to write to update us about your beloved Anthony's tragic loss on June 18th. All of us Hesses who knew and cared so deeply about dear Anthony since first meeting him and sharing treasured time together with him in Boston during the GVAX Clinical Trial are devastated to hear that he has now lost his courageous nine year battle, and our hearts break for all of your dear family and the loss of yet another precious young Life to this insidious disease that has already taken so many.
Anthony was so fortunate to have your dedicated love and support throughout his increasingly challenging ASPS journey. May you find some comfort in knowing that all that love could do was done.
Anthony's great courage will continue to lead and inspire us in our ongoing battle with this treacherous disease as we continue to relentlessly seek an effective treatment and cure that tragically did not come in time to save dear Anthony's precious young Life. He and your family will remain always closely held in our most caring thoughts and aching hearts.
Sharing your and your family's profound sorrow with greatest sadness, deepest sympathy, special friendship, and love,
Bonni on behalf of all of our Hess Family

Scott,
I'm deeply sorry for your loss...
Take care.

Lynette

Scott! :*(
I am lost for any words!

I send you my love an support as i am sure everyone does here!
If you need an ear we are here for you!

Rest in peace Anthony <3

Our hearts are breaking. I am so sorry to read this. Please know that we are praying for all of you!