The Story So Far

I'm starting this blog for a number of reasons. I want to give my family and friends an easy way to keep tabs on my situation as I deal with mycosis fungoides. I also want to provide information and, I hope, encouragement to others diagnosed with MF who might be looking for an account by another patient. I wish to remain anonymous on this blog, so if you post a comment, please don't leave any information that could identify me. I want to thank all my family and friends for their love and support. Especially my dear wife, who has had to endure all of this with me and who has borne it all with incredible love and bravery. I love you, sweetheart, and I couldn't do this without you.

The rest of this post will be a quick summary of how I got here.

Sometime in the 1990's I developed a rash on my waistline. It was especially aggravated by sweat when I would work outside or go to the gym. For years I thought it was just an allergy to elastic. It would itch tremendously, and my only recourse was to wear a t-shirt under an outer shirt, and tuck the t-shirt inside my underwear to keep the itch from driving me crazy. Eventually, the rash spread to all areas of my body. My hands were affected, and it became painful to reach into my pocket for my keys or wallet. Walking became painful. My first dermatologist (who I went to periodically to have non-malignant skin cancers removed) never took a biopsy as my rash spread and kept insisting that I just had eczema. He said "some people just have itchy skin." He gave me steroid cream to alleviate the itch. It kind of worked, but my wife and I scoured the internet looking for other answers. Finally, in the fall of 2007, I thought I had figured out that I might be suffering from some form of wheat allergy. I found a dermatologist who specializes in celiac and made an appointment. She took one look at me and declared that whatever I had, it wasn't celiac. She took a biopsy in late October 2007, and when the diagnosis came in, we were stunned to learn that I had cutaneous T-cell lymphoma (another name for mycosis fungoides). We had never heard of it. She immediately referred me to Dr. Duvic, a world expert on MF at The University of Texas M. D. Anderson Cancer Center in Houston. Dr. Duvic confirmed the diagnosis. She placed me on oral antibiotics and antifungals, explaining that there is evidence of bacterial and fungal involvement in MF. She said some people with MF have even gone into remission with such treatment. Unfortunately that was not the case with me, so she moved me on to a process called photopheresis in January 2008. I won't explain that process, but you can find a fairly easy-to-understand explanation at
http://en.wikipedia.org/wiki/Photopheresis. After several months the photopheresis began to make inroads on my disease. My skin began to clear somewhat. But in late spring 2008 I developed a lesion behind my right ear that was diagnosed as a more aggressive form of the disease. Dr. Duvic canceled the photopheresis and recommended that I undergo chemotherapy, radiation, and a stem cell transplant. This was a devastating development since we had begun to see results from the photopheresis. For most MF patients, the disease is manageable and not life-threatening. But now we were in much more dangerous territory. Most stem cell transplants are fairly successful and result in longer survival and an acceptable quality of life. But for some patients, the transplant either doesn't take (often resulting in death from the disease) or results in severe, quality-of-life-reducing side-effects from graft versus host disease. As inconvenient as the monthly photopheresis trips to Houston were, they at least weren't life-threatening in any way (aside from Houston traffic). So, beginning in early summer of 2008, I began 12 weeks of CHOP chemotherapy. The treatment was overseen by Dr. Romaguera at M. D. Anderson, but conducted by Dr. Kasper in my hometown, Austin. CHOP is an acronym for the 4 drugs used in the treatment. While the chemo certainly had its downside, it wasn't as bad as I'd feared it might be. The main target of the chemo, as I understood it, was the large cell transformation more than the skin symptoms of the MF. It did succeed in ridding me of the lesion behind my ear that was the main symptom of the large cell transformation. My radiation treatment began 3 or 4 weeks after the conclusion of chemo. It was overseen at M. D. Anderson by Dr. Dabaja, and lasted for 8 weeks. It greatly reduced my MF skin conditions. With my blood and skin disease conditions all improved, my doctors cleared me to advance to the stem cell transplant. On Jan. 5, 2009, I was fitted with a central venous catheter just below my left collar bone to facilitate the many medications and treatments I will have to receive.