Paul E. Johnson
I was diagnosed with malignant Thymoma in June of 2001. The doctors tried the normal procedure of surgery, but after opening my chest up found it was too dangerous. From August 2001 till November of 2001 I took a regime of three chemo drugs (Cisplatin, Cytoxan, and Doxtorubicon). This was followed in January-February 2002 with thirty-one radiation treatments, the max I could have. In March 2002 it was discovered the Thymoma had moved to my lungs and liver. I then went through treatment with two chemo drugs (Carboplatin and Taxol), from April of 2002 till September 2002. In January 2003 the tumors on my liver were growing so I am now on the chemo drug Etoposide.
Our doctor ( Dr. Rau) has done an excellent job for someone who had never handled this type of case. He has been very open with suggestions we put forth. Dr. Patrick J. Loeher at Indiana University has been an excellent source as well. He has treated more Thymoma patient than any doctor. Dr. Tokita in Irvine, Ca is also an excellent source. He did an experimental treatment on his sister that had only been given thirty days to live, three years ago. Unfortunately for the rest of us FDA has not given approval for the treatment.
There is an excellent support group at the hospital in Mission Viejo, CA. They are a very upbeat and positive group. We have several longtime survivors as well as losing several members the last year. They are all types of cancer not just Thymoma’s. We (my wife and myself, as well as my son and daughter) all searched the web for information and found some information not a lot. It seems like the more time goes by, more information is available.
I would be interested in sharing information with others in my area.
pjins@mindspring.com
Update:
Latest cat-scan shows the largest tumor on my liver is still shrinking. Down to 1.1 cm from 1.3 cm in April. Staying on Etoposide for at least three more months.
Update:
Not only do I have a rare cancer, now it appears I may be having very rare side effects to the chemo. I have had two episodes of what may be transient cortical blindness. If I have one more the doctor is going to stop the treatment.
The Etoposide seems to be still working as the tumors have shrunk a little, very little in fact, but still shrinking.
UPDATE:
The results of my quarterly tests are in and very little change. Therefore staying on Etoposide. It has now been a year since I started Etoposide. The doctor is saying the cancer is not curable, but hopefully controllable. It seems like the Etopside is controlling and also allows me to live an almost normal life.
I am doing more things and getting more strength day by day.