Ted’s Story

Ewing’s sarcoma at the spine with multiple mets
Age at diagnosis: 42
Date of Diagnosis: June 2004
Location: Florida
Oncologists: Dr. Mayda Arias, Dr. Abdon Medina, Dr. Larry Einhorn
Hospital: Holy Cross Hospital

Diagnosis: My PNET (a form of Ewing’s Sarcoma) was first diagnosed in June, 2004. It arose from morphed teratoma cells from my previous diagnosis of testicular cancer, which I had been diagnosed with in November 1998. While I had been treated for the testicular cancer, having had an orchiectomy in December 1998, follow-up chemo in June 1999, surgery to remove my first teratoma in my neck in November 1999, and three subsequent resections for new teratomas in my chest (9/2001), neck (same spot – 11/2002), and abdomen (6/2003), in late 2003 and early 2004, I started to have some back pain, which I was unable to relieve. I have had a history of back problems, so this didn’t seem to be anything different. Unfortunately, on June 16, 2004, I started to lose some of the feeling in my legs and was admitted to the hospital, where an MRI revealed multiple lesions in my spine, including one pressing against my spinal column. A biopsy revealed a new germ-cell tumor and my original oncologist misdiagnosed it as more of the same testicular cancer. At this point, I contacted Dr. Larry Einhorn at Indiana University, who diagnosed my condition right over the phone (which was totally amazing). A follow up appointment with him in Indianapolis less than a week later confirmed that I did indeed have PNET and apparently this could arise from mutant teratoma cells from testicular cancer.

Treatment: Because the PNET has metastasized throughout my skeletal structure at this point, there is no possibility of doing any surgery. In July 2004, I began the first round of radiation to my spine, which effectively destroyed the tumors; PNET fortunately is extremely radio-sensitive. The radiation was followed with the customary Ewing’s chemo regimen of six cycles of the three drugs + two drug protocol. This lasted until the end of 2004. As I had had chemo before, I wasn’t concerned about the intensity of the treatment. However, I did end up in the hospital on eight separate occasions with cellulitis and neutropenic fever due to the chemo. It wasn’t until I had a port installed that the cellulitis stopped. As of December 2004, I have been receiving Zometa every 4-6 weeks to strengthen my bones.

In July 2005, I ended up with new pain/tumors in different parts of my spine and in my left hip. Those areas were radiated and the tumors killed. In September 2005, I started receiving Avastin in the hope that it might keep the cancer at bay. Unfortunately, in July of this year, I discovered a mass on my left flank. CT scans revealed a tumor extending from my lower left rib, as well as a tiny mass extending from another rib into my lung. I also started to develop pain in my right shoulder and further scans have revealed tumors in my humerus and sternum. I am undergoing radiation for all of these areas, but am most alarmed by the rapid increase of cancer activity over the last two months.

Recovery: Recovery? What recovery? I feel I am always in a state of watchfulness, waiting for the shoe to drop. While I have been fortunate to have had some extended periods with virtually no symptoms, I know that these are just lulls before the next onslaught. My hope is to consult with specialists at Memorial Sloan-Kettering to determine if there is another protocol I can use to help prevent the continued recurrence. While the radiation is always effective, I need to find some better systemic agent to prolong my life.

At this point, I am constantly dealing with pain issues. However, I do consider myself quite fortunate that I can walk, drive, and basically function normally for the time being. And I intend to keep doing this for quite a while.

Life now: My life would be fabulous if I didn’t have this stupid disease. I and my partner, Michael, are about to relocate after having sold all of our real estate holdings in South Florida. We own a successful business and while I am currently on disability, the plan is for us to move our business and then take a year off and travel. While we could afford to retire, I know my partner would go crazy not doing anything (he’s only 41). I, however, will hopefully be around, fully retired, sitting around the house eating bonbons, watching all of my recorded TV shows and Netflix, enjoying my new home, spending money, and not working at all.

Thoughts and hints for new patients: The most important thing to remember is that you just have no idea how much time you have, so you’d better enjoy every minute you’ve got left. When I walked into Dr. Einhom’s office in July, 2004, he said to me, “Oh, I see that you still walking, that’s good,” which I took to be an encouraging sign! And while he wouldn’t give me a prognosis, he did indicate he had a patient who was still living with the disease 2 1/2 years after diagnosis. While I knew the outlook was serious and I don’t want to kid you and let you think that I never get depressed, the reality is that I’m still alive and walking and that’s what you have to stick with. In the past two years since my initial Ewing’s diagnosis, I have been on trips to Germany, Key West, FL, Hawaii and Amsterdam, and am off to Oktoberfest in a week in a half. While I do sometimes have considerable pain, I pop the pain meds and keep going. You just can’t give up – that cure is just around the corner and I intend to live to see it.