Karen passed away in August 2004.
I was diagnosed with thymic carcinoma late last year, stage IVB with lymph node metastasis. To date I have undergone six rounds of chemo (carbo and taxotere). I have to meet with my doctor to determine the next step. Are there either patients or physicians whom I could contact to discuss what to do? My doctor doesn’t seem very hopeful.
One of the worst things is that i just feel so alone. I’ve had chemo but not radiation. My doctor is waiting to see what the chemo does and is also hoping to put me on Iressa when it comes out.
With the thymic cancer, my main tumor is in the mediastinum, upper chest area, with metastases into the lungs and lymph nodes. (one underarm lymph node lump is gone because they took it for a biopsy. The other, above my collar bone, has shrunk so I can barely feel it.) My doctor seems hesitant as to what to do next. I get the feeling he’s pretty much written me off. He told me I had less chance than a lung cancer patient, and their odds are pretty horrible. I do think that if I expect a cure, I’m going to have to do radiation and surgery.
I thought I would update people as to my situation. As of Sept. 2003, I was diagnosed a year ago, have undergone IV chemo and am now on Xeloda, which appears to be helping. The cancer has shrunk and is less active, according to PET scans. My doctor still advises against surgery as long as something like Xeloda or possibly Iressa, which we may try next, is helping. I feel normal and have returned to a full-time job. My energy level is probably a little lower than it used to be, but not much. Otherwise, I am pretty much living life as normally as possible. The side effects of Xeloda, an oral drug, are fairly minimal. I just hope it keeps on working. Anyone else’s experiences with Xeloda would be welcome.
An update as of late October. Xeloda is no longer working, so I’m enrolling in Dr. Loehrer’s Iressa trial. I get the feeling I’m running out of options. Has anybody else had any experience with Iressa? How about with combining Iressa with radiation? Any input would be appreciated.