In November of 2015, I started having problems breathing and I felt more tired than normal. I went to my GP and she said it sounded like a hiatal hernia. But she wanted to confirm, so she ordered X-rays. From there, she said there was something visible but couldn’t make it out. She ordered a CT scan which showed a 5.25 cm mass on the left side of my chest. We quickly had a biopsy done and it came back spindle cell. It was sent to the Mayo clinic for further evaluation and it came back synovial sarcoma. I also had a pet scan which only showed one tumor and was told I was likely stage 3… (this process occurred within about 4 weeks time) I consider myself very lucky!
I was sent to a CT Surgeon named Dr. Patterson at Wash U here in St. Louis. He said he could remove it without shrinking it but recommended that I speak with Dr. Van Tine, a sarcoma specialist. (also at Wash U) Without getting into much detail, I started chemo right away. (I’m a 41 year old male, married with 3 young children) I was put on a 21 day schedule of ifosfamide, doxorubicin and mesna. After my first cycle I developed plural infusion and was rushed to the hospital via ambulance to drain 650cc’s of fluid. During this visit they took additional scans and the tumor had grown to 5.75 cm. In addition there was another small tumor showing up. I think they called it a Fisher and said the chemo wasn’t working. The on staff doctor told me I was stage 4 and was terminal. It was a terrible Christmas Eve and my wife and I were in tears all night. The next morning the “on staff” oncologist came back to the room and said Dr. Van Tine disagreed with his diagnosis.
The following week I had another CT scan. I was scared to death as to what they might say. To this point in time everything had been terrible news. However, that week was a turning point in my life. Without getting too religious, I did a lot praying and sole searching. The day before I heard my results, I had an overwhelming feeling of peace. That my results would be parallel to the way I felt. I didn’t know what this meant until a few hours later?
So Dr. Van Tine walked in the door and asked me how I was feeling. My response was… A very timid, “I feel good…” He laughed and said, “you better. Your tumor halved. It nearly shrank in half.” I was shocked. Again, more tears… (this must be another symptom of synovial) The next 7 cycles were much less eventful. They were very tough but I managed with the help of my wonderful support group. They have been amazing!
In April I had a thoracotomy, during which they removed part of my left lung and diaphragm. The tumor had shrunk to 1.9 cm. They went in from the back. Through my lat muscle, using forceps to spread/break the ribs and took out the tumor with negative margins. Even though I was given an epidural, it was a new level of pain… Which I still feel as I type this.
The next treatment which occurred only 4 weeks later was proton radiation. Because I had surgery first, Dr. Mchulfsky insisted I do 35 treatments. He said I needed two more weeks to get through the scar tissue from surgery. This has really been a breeze. I’ve had fatigue, trouble swallowing and my incision reopened. On a positive note my hair has started to come back and so has the weight. As I type this I have 6 treatments left.
I’m extremely excited to finish treatment. I realize that this cancer is very dangerous and can come back quickly with a vengeance. But I’m optimistic that I have done everything to the best of my ability. My Doctors have been incredible. I feel very blessed/lucky to this point in time. My first post op scan is September 14th. The following month I have a sarcoma run (which all of you should consider attending or supporting) I think Dr. Van Tine is in charge of it. I think you all know the drill after that, scans for the next 10 years if I’m lucky. I should mention that I will ask them to do a scan of my right arm. I know I sound paranoid but I used to be very active. (Lifting weights 5 days a week) For nearly 6 moths prior to my diagnosis I had pain in my right arm just below the elbow. Strangely enough it went away during chemo but returned after surgery. Granted I have started lifting on a very mild level again. But it is still a little scary.
I look forward to meeting many of you and fighting this terrible disease together. I’m very excited about the new treatments that are in the works. Especially from Adapt Immune. Please feel free to ask any questions, as I did gloss over several areas. I was just trying to keep this to a minimum.