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, 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 still 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. 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, 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. 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.
De-differentiated chondrosarcoma at the distal humerus
Date of Diagnosis: May 2008
Age at diagnosis: 42
Location: Orlando, Florida
Surgeon: Dr. Douglas Letson – Moffitt Center
Oncologist: Dr. Robert Reynolds, Dr. Jeffrey Morgan (DFCI)