This post is for information. I have been through the list of all participants on this web site, and find only one other person with CTCL/MF (Cutaneous T-Cell Lymphoma/Mycosis Fungoides). I hope the following information may be helpful to others searching for an answer. My husband began with a red spot on his forehead in 2002. I, thinking he had suddenly presented with "skin cancer," immediately got him in to the doctor. He was told he had psoriasis, not to worry, use an ointment and T-gel shampoo, and it would clear up. Four and a half years and many many doctors later, with red patches showing up all over the body -- head, neck, face, back, arms, chest, legs, buttocks -- we had received diagnosis' of Lupus, Rheumatoid Arthritis, "obviously psoriasis," a reaction to multi-vitamins or his blood pressure medication, and many others, finally being told CTCL/MF in November of 2006. The attempts to get an answer were extremely frustrating, especially as his skin got so dry it had huge "blister" type sores which would crack and bleed. We got to the point of using straight olive oil, then shea butter in attempt to soften the skin to keep it from cracking. Nothing helped.
After finally getting a diagnosis, the dermatologist here sent him to MD Anderson in Houston, where the diagnosis was confirmed. There are medications to help control, but not to cure. My husband has been using Targretin gel and capsules, Triamsinolone ointment, Clobetasol ointment, Elidel cream and Protopic ointment, and taking multiple fish oil capsules/ day. The regimen with all these topically applied ointments takes about twenty minutes twice a day, but the results are worth it. Though the spots aren't gone, they have faded enough he will once again wear short sleeved shirts.
The interesting thing about his situation is that in 1996 he had an old graft replaced in his aorta. They changed from dacron to gortex, and the doctor in Houston said that could be what turned the fighter T-cells on...attempting to fight the new foreign body. Between the time he had the new graft, and the diagnosis of CTCL, he had many bouts of iritis/uveitis, and the eye doctor was the first to associate the eye flares with the back aches (which occurred each time there was an eye flare), which finally tied in with skin flares as well. This means that all those years of eye flares were a time when the CTCL was working hidden in his body. Also, a word of warning...one of the earlier trials at getting the skin under control was to use UVB photo therapy. Because of the topical ointments being used at the same time (which were somewhat immuno-suppressive) he ended up with a very large squamous cell cancer on his nose which necessitated Moh's surgery and 13 cuts of skin removed before they had all that cancer. He had no skin left on his nose, and had to have re-constructive surgery.
He also has had kidney cancer (Renal Cell - clear type). Again, the doctor in Houston says that since he has so many foreign objects in his body (surgical clips, wire holding his chest together, graft) this may be what turned the T-cells on. She has mentioned she has two other patients with "foreign bodies" - one being a knee replacement - who have then presented with CTCL. I hope this may help someone looking for answers. Lisa
UPDATE 16 December 2008:
My husband has improved from >22% skin involvement two years ago to 2% skin involvement at his appointment earlier this month. We are now working on reducing the oral Tragretin capsules, as they have severely impacted his triglycerides, and with his previous cardic situations we don't want to add to that situation. Please see below in my response to Barb to see what has helped him.
Last edited by Lisa on Tue Dec 16, 2008 8:02 am, edited 1 time in total.