jrb14141's Journey with Lymphoma of the Skin

Had itching for 3.5 years.Seen by many doctors. Went to Best Docs at NYU etc. No rash so tried many treatments over those years Finally skin changes and biopsy was done.

Was finally diagnosed with Cutaneous T Cell Lymphoma or Mycosis Fungoidis.

At the Cancer center we agreed to try the radiation as a first line treatment altho it usually isn't because of my skin changes which by now were becoming quite evident and the increasing awful itching. Well, my skin cleared beautifully but the itch remains.

Spent a fortune and no relief obtained.Finally changed doctors and was put on a monoclonal antibody. Minimal side effects except the usual depressed immune system. Gained 10 needed lbs and felt so much better. Still itching. Became very rashy after 6 months so changed to a new drug which I just started.

I have been accepted into a clinical trial at the National institute of Health in Bethesda Maryland as medicare would not pay. This will be for a stem cell transplant. Last week I got the news that there is a donor avaiable so in May I'm risking all to stop this disease.