Anthony's disease has progressed

[argonaut]

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.

[Bonni Hess]

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

[Fernette]

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.

[argonaut]

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/medicine-health/articles/new-treatment-extends-life-melanoma-patients-average-four-months-large-clin

[Amanda]

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

[Fernette]

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....