Just found out my dad has it.
How bad is lymphoma of the skin? Is it cureable?
There are numerous types of cutaneous lymphoma with different prognosis. One of the more common varieties of this rare type of lymphoma is cutaneous t-cell lymphoma, formerly called mycosis fungoides.
Cutaneous t-cell lymphoma is not curable but for the majority of people diagnosed with it, assuming they seek proper treatment, will live a normal lifespan and die from something else other than the CTCL. Most people diagnosed with CTCL will need to undergo treatment from time to time, sometimes for long periods of time, but the disease usually remains confined to the skin and often more of a chronic nuisance rather than a life threatening illness. A small percentage of people with cutaneous t-cell lymphoma, usually those affected with tumors or blood involvement at time of diagnosis will pass away within 2-15 years. The good news is that even very aggressive CTCL is now treatable with stem cell transplants and sometimes complete remission results. Only time will tell whether or not these people are truly cured.
Here is the web page for the Cutaneous Lymphoma Foundation. If your dad has CTCL then I suggest that you join their listserv so he can keep up with new treatments and best Drs. Because cutaneous lymphomas are relatively rare the people who do best are those who are treated by a Dr with many cutaneous lymphoma patients or at a cutaneous lymphoma clinic such as those found at MD Anderson, Stanford, Yale, NW, Vanderbilt and elsewhere. See the CLF web page for more information including additional listings of expert Drs in cutaneous lymphoma.
http://www.clfoundation.org/
Reply:Cutaneous Lymphoma
Lymphoma that starts in the skin is called primary cutaneous (skin) lymphoma. Most of these lymphomas are the T-cell type and are called cutaneous T-cell lymphoma (CTCL). Mycosis fungoides and Sezary's syndrome are other names for CTCL. Diagnosis, staging, and treatment of cutaneous lymphoma is not the same as that for NHL that starts in lymph nodes and other organs.
Patients with CTCL may have localized or extensive skin thickening and/or redness. They may develop nodules (lumps) of the skin. A skin biopsy is needed to diagnose CTCL. Some cases of CTCL may be very difficult to recognize under a microscope, and special studies of the biopsy sample, such as flow cytometry or molecular genetic analysis, are often helpful. Skin involvement may be treated by topical chemotherapy (chemotherapy drugs applied directly to the skin). Other options include electron beam radiation therapy (a type of radiation that can kill cancer cells in the skin without much damage to deeper tissues), cis-retinoic acid (a drug chemically related to vitamin A), and psoralen with ultraviolet light (combination of a drug and "sun-lamp" that may help kill CTCL cells).
Once CTCL has spread to lymph nodes or other organs, chemotherapy is usually needed. Drugs used include Adriamycin, cyclophosphamide, methotrexate, bleomycin, and prednisone (alone or in combination). Nucleoside analogs (Pentostatin, 2-CDA or fludarabine) and interferon are sometimes used. Investigational biological therapies using monoclonal antibodies are being studied in clinical trials.
Good luck.
DS
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