James' story
I suffered a pathological fracture to the left distal Humerus in April of 2008, with no prior signs or symptoms. Diagnosis was confirmed by the Armed Forces Institute of Pathology as a De- Differentiated Chondrosarcoma.
I was 42 years old at the time, with an excellent medical history, both individually and familial, (parents/grandparents all 95 plus) with no history of cancer in the family. I took no medications, and was extremely active riding BMX bikes semi-pro, and exploring underwater caves around the world. My world changed at that point, and this became my project.
Other than the progression of my cancer, I still enjoy excellent health, and take no medications. In June of 2008, the tumor was resected, my arm salvaged and rebuilt, and I have a good functional result from that. I underwent a humeral implant w/ a total elbow Arthroplasty. The hand works great; the shoulder works great, although I have significant reduced ROM in the elbow joint.
Being that no good treatment exists for this very rare cancer, I underwent 4 rounds of chemo (Ifosfomide/Etopicide a Ewings Sarcoma treatment), and 35 treatments of radiation to the tumor bed.
Fast-forward to March 2, 2009. A CT of the chest w/contrast revealed 2 nodules in the lungs. (1) in the upper right lobe, medial to posterior, approximately 1.2cm x 1.7cm, and (1) in the lower left superior lobe about 7mm. Both operable. On March 16 of this year I had the larger one removed in the right upper lobe, through a VATS thorocascopy procedure. It was confirmed as Metastatic Sarcoma in a De-Differentiated Cartligious Mixoid Stroma.
A portion of that specimen has been sent to Rational Therapeutics in California, and is being directed by Dr. Jeffrey Morgan at Dana-Farber in Boston. A cell line has been started, and while I recover I'm flying to meet Dr. Robert Maki at Sloane- Kettering in Manhattan.
I'm about to enroll in a Phase-Ia clinical trial at Dana-Farber where we'll see what results GDC-0152, a targeted molecular therapy drug has on me. Right now, and prior to this treatment, 16 different traditional chemotherapy drugs will be tested on my tumor to see the response. Being a De-Differentiated Chondrosarcoma survivor, the cells are expected to be insensitive to the drugs, but protocol is required.
They'll also be testing a new inhibitor, due for release in April 2009. It's protocol still not approved by the FDA. I will be the first Chondrosarcoma patient to receive some of these new drugs. The paradigm in cancer treatments is shifting rapidly right now, and on the edge is where I must live.
I'm use to that :)
