After reading the horror stories this disease brought upon us I thought I would share my story.
I was diagnosed Jan 04 with stage IVb Thymic Carsanoma. I also had pneumonia, anemia and periocarditis when I showed up at the emergency room (PS I am a male 36 years old and was in excellent shape prior).
After the biopsy surgery I needed surgery to remove the tumor (11×16×7 mm in size) in my chest. First, I needed heart surgery for the pericarditis, I had about two liters of fluid drained. After that
they next removed the tumor (along with my left frenetic nerve) and started me on radiation. Because of the nerve now gone I lost the use of my left lung.
Two months later (march) the cancer sread to the bones all over my back and skull. This led to immmense pain. They changed radiation from my chest temporarily to start on my back and also started me on cisplatin and VJ16 – my chemo. These surgeries, chemo and hospital stays cost me about 45lbs from my body. I went from 185 down to 138 and stand 6 feet tall. I became bald, no appetite and extremely tired, basically I felt more horrible than I ever imagined existed.
After immense pain, about 40 treatments of radiation and 6 cycles of chemo, three surgeries, pounds of pills and hundreds of shots – I became pain free and in full remission. I am a shell of my former self but at least now starts the rebuilding period. This has been a nightmare from the pain that started it all back in Nov 03 and is now ongoing. I now live in the fear of it returning. I have read all the stories about it returning and what life expectancies are. I know all the bad stuff still to come but hell I am not giving up now. I fought to hard and had to many people fighting for me I would never dishonor them and not fight.
So, to further my treatment I am starting radiation again in Aug 04.
The original treatment was to be Cisplatin, Adriamycin, Cytoxan and Vicristine. But the after the doctor consulted with Sloan Kettering in NYC. I was giving only Cisplatin and VP16 for an unknown amout of cycles ( turned out I needed only 6). I had extensive radiation done for the bones metastises and chest area.
My tumor was descibed as Stage IV Poorly Differentiated involving lyphe nodes (3) and with gross invasion of the pericardum and surrounding phrenic nerve. The tumor also was connected to major arteries from the heart and was also invading the lung with a 7.5×1×1 wedge of the lung was resected. It hasn’t been descibed in either A or B stage though. My tumor wieghed 262 grams when resected. IHC staining for CD5 was Strongly Positive in Tumor cells.
Moderate reaction with C-Kit (CD117). TTF-1 Staining and CD30 were negative. I believe the cell type was epidermoid nonkeratinizing carcinoma lymphoepithelioma-like. I remember reading that somewhere amongst this novel size medical history of mine.
For me, My latest rounds of testing brought bad news. It now seems to have returned with a vengance. It has returned to my spine making it difficult to walk and very painful. It also is on my hip, ribs, shoulder, femur and other spots on my spine. It also might be in the lung (the one that doesn’t work anyway), Not sure what they are going to recommend this time BUT I have scheduled and appointment with Dr Loehrer Nov. 22nd. I am absorbing all the cost but I think it makes the most sense. I seem to get the feeling nobody really knows what to do and all this has been a crap shoot. I am taking it one day at a time and so for I have been winning every battle and no reason not think it wont continue. I just look for reasons to drive my car – makes me really happy.