Tom's resource links for people diagnosed with Mycosis Fungoides, also known as Cutaneous T-Cell Lymphoma and including the variant known as Sezary Syndrome. This webpage is a work in progress and I will add text and articles as time allows. If you are diagnosed with mycosis fungoides or cutaneous t-cell lymphoma, it is important to be evaluated by a physician who specializes in MF-CTCL. This cancer is seen only rarely by most physicians, dermatologists or oncologists and is often hard to diagnose in the early stages. Often early mycosis fungoides is mistaken for eczema, psoriasis, dermatitis or other common skin ailments. Unexplained itching (pruitis) is a common symptom for many people with mycosis fungoides. Because early mycosis fungoides can mimic so many common skin diseases, a series of skin biopsies may be necessary that are then read by a experienced dermatopathologist who can then determine if there is a definitive diagnosis of mycosis fungoides. Because of the rarity and odd presentations of MF, the best results will be obtained when your treatment is overseen by a doctor who specializes in MF or treats many MF patients. Mycosis fungoides is the most common type of the relatively rare lymphomas which are known under the umbrella name of cutaneous t-cell lymphoma. Mycosis fungoides is usually an indolent (slow growing) cancer, but in rare cases may become aggressive. It is not uncommon to have eczema-like skin problems for many years before a definitive diagnosis of MF is made by an alert Dr. In the past, MF was usually diagnosed only in the latter stages and was therefore more difficult to treat with the treatments available at that time. While the older medical literature was often pessimistic about a diagnosis of mycosis fungoides, today this same diagnosis may be viewed in a more positive manner, with MF often being a more manageable disease for all stages and sometimes even curable (achieving a durable remission) with early stage disease. Today more people are being diagnosed at earlier stages and with the many treatment options now available, most Stage 1 MF people will live a normal lifespan and probably die from something other than MF if they seek proper treatment. Among the usual treatments for early mycosis fungoides are topical corticosteroids, UVB light treatments, UVA light treatments known as PUVA, topical chemotherapy with agents such as nitrogen mustard (Mustergen by Merck) or BCNU (carmustine), and sometimes TSEB (total skin electron beam radiation) or Targretin gel, the topical form of a retinoid (bexarotene) recently approved by the FDA for CTCL. Some people will respond best to one treatment while others do best with another treatment or a combination of treatments. This difference in response to different agents is one reason why the help of a physician experienced with MF is very important for the best results. Among the treatments used for refractory or advanced MF (tumor stage) or Sezary syndrome (MF spread to the blood via high levels of Sezary cells) are TSEB (total skin electron beam radiation), photopheresis also known as extracorporeal photochemotherapy or ECP, the newly approved Ontak, the newly approved Targretin capsules (bexarotene capsules), radiotherapy and various systemic chemotherapy agents such as Cladribine, Pentostatin, or methotrexate . Interferon injections may be used as an anti-tumor agent. Sometimes these systemic treatments are coupled with one or more of the topical treatments mentioned above in an attempt to produce better results. Exciting progress in treating advanced MF-CTCL and Sezary syndrome using stem cell or bone marrow transplants has been made in the last few years. While these treatment options are currently available at only a few medical facilities with extensive experience in both MF-CTCL and stem cell or BMTs, the potential for curing late stage MF-CTCL is now within the realm of the possible. The best treatment for MF-CTCL is the treatment that works best for you. CTCL-MF LISTSERV and Support Organizations To join or leave the ACOR CTCL-MF listserv or access to the Archives: This is the ACOR listserv of people diagnosed with or affected by MF-CTCL. CTCL-MF-Parents list This list is for the parents of children diagnosed with MF-CTCL Cutaneous Lymphoma Foundation website Cutaneous T-Cell Lymphoma - Mycosis Fungoides - Sezary Syndrome Information and Support Group Homepage Mycosis Fungoides UK online support group Unfortunately the Archives of Dermatology and several other online sources of mycosis fungoides and cutaneous t-cell lymphoma information have recently changed to only allow viewing by paid subscription. This is too bad in light of the dearth of online information available about this wierd disease. I am updating the dead links as quickly as possible and trying to replace the full text articles with at least the online abstracts still available for free. Thanks for your patience. Moffitt Cancer Control Journal CTCL (volume 5, article 1): CTCL Presenting as benign dermatoses by Dr Kathleen B. Elmer Mycosis Fungoides by Dr Lauren Pinter-Brown, MD NCI-PDQ Patients Information CTCL Current Treatment of Cutaneous T-Cell Lymphoma by Dr Madeline Duvic Mycosis Fungoides Targretin capsules patient information Targretin gel patient information Poikiloderma Vasculare Atrophicans Mycosis Fungoides Ontak prescribing info Cutaneous T-Cell Lymphoma, Mycosis Fungoides & Sezary Syndrome Cutaneous T-Cell Lymphoma overview Follicular Mycosis Fungoides, a Distinct Disease Entity with or without Asscociated Follicular Mucinosis Cutaneous T-Cell lymphoma: Pathogenisis and Treatment In Search of Complete Remission CTCL- A Primer for Diagnosis and Treatment Topical Corticosteroids for Mycosis Fungoides, experiences in 79 patients Clinical Characteristics and Outcome of Patients with Extracutaneous Mycosis Fungoides by Drs Youn Kim and Richard Hoppe Photopheresis Mycosis Fungoides Survival and Prognostic Factors in Patients with CTCL Mycosis Fungoides, Diagnosis and Treatment Challenge Cutaneous T-Cell Lymphoma - The Great Imitator Mycosis Fungoides Disease Evolution and Prognosis of 309 Dutch Patients Topical Nitrogen Mustard in the Management of Mycosis Fungoides (update of the Stanford experience) Management with Topical Nitrogen Mustard in Mycosis Fungoides Clinical Stage 1A (limited patch and plaque) Mycosis Fungoides. A Long Term Outcome Analysis http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8915 308&dopt=Abstract Clinical Characteristics and Long Term Outcome of Patients with Generalized Patch and/orPlaque (T2) Mycosis Fungoides Longterm Outcome of 525 Patients with Mycosis Fungoides and Sezary Syndrome Monitoring the Decrease of Circulating Malignant T cells in CTCL During Photopheresis and Interferon Therapy Transformation of Mycosis Fungoides, clinicopathological and prognostic features of 45 cases Fungoides Foiler Sezary syndrome Pentostatin Treatment of Cutaneous T-Cell Lymphoma Infectious Complications of Cutaneous T-cell Lymphoma (will need Adobe Acrobat reader to open PDF file) Management of Mycosis Fungoides, Part 2 Treatment by Dr Lynn Wilson Association of Erythrodermic Cutaneous T-cell Lymphoma, Super Antigen positive Staphylococcus aureus, and Oligoclonal T-Cell Receptor Gene Expansion (will need Adobe Acrobat reader to open PDF file) Mycosis Fungoides, Facts and Controversies (will need Adobe Acrobat reader to open PDF file) CTCL information in Spanish - Micosis Fungoide/Sindrome de Sezary Agent Orange Info for VVA Information Search Tools: Medlineplus PubMed Medscape - join for free to access a wealth of various medical information resources including many abstracts and articles by MF specialists www.medscape.com WebMD eMedicine Dermatology Times Derm Guide: General Lymphoma Information Lymphoma Research Foundation of America Lymphoma Information Network this page under continual construction by Tom Crabtree tc8671@yahoo.com last updated 07-06-06 Please let me know if you find any dead links. Disclaimer: This site is for general information only. See your Dr for medical advice and treatment. Twenty thousand and |
Tom's Mycosis Fungoides Webpage Mycosis Fungoides / Cutaneous T-cell Lymphoma / Sezary Syndrome |
Tom's resource links for people diagnosed with Mycosis Fungoides, also known as Cutaneous T-Cell Lymphoma and including the variant known as Sezary Syndrome. This webpage is a work in progress and I will add text and articles as time allows. If you are diagnosed with mycosis fungoides or cutaneous t-cell lymphoma, it is important to be evaluated by a physician who specializes in MF-CTCL. This cancer is seen only rarely by most physicians, dermatologists or oncologists and is often hard to diagnose in the early stages. Often early mycosis fungoides is mistaken for eczema, psoriasis, dermatitis or other common skin ailments. Unexplained itching (pruitis) is a common symptom for many people with mycosis fungoides. Because early mycosis fungoides can mimic so many common skin diseases, a series of skin biopsies may be necessary that are then read by a experienced dermatopathologist who can then determine if there is a definitive diagnosis of mycosis fungoides. Because of the rarity and odd presentations of MF, the best results will be obtained when your treatment is overseen by a doctor who specializes in MF or treats many MF patients. Mycosis fungoides is the most common type of the relatively rare lymphomas which are known under the umbrella name of cutaneous t-cell lymphoma. Mycosis fungoides is usually an indolent (slow growing) cancer, but in rare cases may become aggressive. It is not uncommon to have eczema-like skin problems for many years before a definitive diagnosis of MF is made by an alert Dr. In the past, MF was usually diagnosed only in the latter stages and was therefore more difficult to treat with the treatments available at that time. While the older medical literature was often pessimistic about a diagnosis of mycosis fungoides, today this same diagnosis may be viewed in a more positive manner, with MF often being a more manageable disease for all stages and sometimes even curable (achieving a durable remission) with early stage disease. Today more people are being diagnosed at earlier stages and with the many treatment options now available, most Stage 1 MF people will live a normal lifespan and probably die from something other than MF if they seek proper treatment. Among the usual treatments for early mycosis fungoides are topical corticosteroids, UVB light treatments, UVA light treatments known as PUVA, topical chemotherapy with agents such as nitrogen mustard (Mustergen by Merck) or BCNU (carmustine), and sometimes TSEB (total skin electron beam radiation) or Targretin gel, the topical form of a retinoid (bexarotene) recently approved by the FDA for CTCL. Some people will respond best to one treatment while others do best with another treatment or a combination of treatments. This difference in response to different agents is one reason why the help of a physician experienced with MF is very important for the best results. Among the treatments used for refractory or advanced MF (tumor stage) or Sezary syndrome (MF spread to the blood via high levels of Sezary cells) are TSEB (total skin electron beam radiation), photopheresis also known as extracorporeal photochemotherapy or ECP, the newly approved Ontak, the newly approved Targretin capsules (bexarotene capsules), radiotherapy and various systemic chemotherapy agents such as Cladribine, Pentostatin, or methotrexate . Interferon injections may be used as an anti-tumor agent. Sometimes these systemic treatments are coupled with one or more of the topical treatments mentioned above in an attempt to produce better results. Exciting progress in treating advanced MF-CTCL and Sezary syndrome using stem cell or bone marrow transplants has been made in the last few years. While these treatment options are currently available at only a few medical facilities with extensive experience in both MF-CTCL and stem cell or BMTs, the potential for curing late stage MF-CTCL is now within the realm of the possible. The best treatment for MF-CTCL is the treatment that works best for you. CTCL-MF LISTSERV and Support Organizations To join or leave the ACOR CTCL-MF listserv or access to the Archives: This is the ACOR listserv of people diagnosed with or affected by MF-CTCL. CTCL-MF-Parents list This list is for the parents of children diagnosed with MF-CTCL Cutaneous Lymphoma Foundation website Cutaneous T-Cell Lymphoma - Mycosis Fungoides - Sezary Syndrome Information and Support Group Homepage Mycosis Fungoides UK online support group Unfortunately the Archives of Dermatology and several other online sources of mycosis fungoides and cutaneous t-cell lymphoma information have recently changed to only allow viewing by paid subscription. This is too bad in light of the dearth of online information available about this wierd disease. I am updating the dead links as quickly as possible and trying to replace the full text articles with at least the online abstracts still available for free. Thanks for your patience. Moffitt Cancer Control Journal CTCL (volume 5, article 1): CTCL Presenting as benign dermatoses by Dr Kathleen B. Elmer Mycosis Fungoides by Dr Lauren Pinter-Brown, MD NCI-PDQ Patients Information CTCL Current Treatment of Cutaneous T-Cell Lymphoma by Dr Madeline Duvic Mycosis Fungoides Targretin capsules patient information Targretin gel patient information Poikiloderma Vasculare Atrophicans Mycosis Fungoides Ontak prescribing info Cutaneous T-Cell Lymphoma, Mycosis Fungoides & Sezary Syndrome Cutaneous T-Cell Lymphoma overview Follicular Mycosis Fungoides, a Distinct Disease Entity with or without Asscociated Follicular Mucinosis Cutaneous T-Cell lymphoma: Pathogenisis and Treatment In Search of Complete Remission CTCL- A Primer for Diagnosis and Treatment Topical Corticosteroids for Mycosis Fungoides, experiences in 79 patients Clinical Characteristics and Outcome of Patients with Extracutaneous Mycosis Fungoides by Drs Youn Kim and Richard Hoppe Photopheresis Mycosis Fungoides Survival and Prognostic Factors in Patients with CTCL Mycosis Fungoides, Diagnosis and Treatment Challenge Cutaneous T-Cell Lymphoma - The Great Imitator Mycosis Fungoides Disease Evolution and Prognosis of 309 Dutch Patients Topical Nitrogen Mustard in the Management of Mycosis Fungoides (update of the Stanford experience) Management with Topical Nitrogen Mustard in Mycosis Fungoides Clinical Stage 1A (limited patch and plaque) Mycosis Fungoides. A Long Term Outcome Analysis http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8915 308&dopt=Abstract Clinical Characteristics and Long Term Outcome of Patients with Generalized Patch and/orPlaque (T2) Mycosis Fungoides Longterm Outcome of 525 Patients with Mycosis Fungoides and Sezary Syndrome Monitoring the Decrease of Circulating Malignant T cells in CTCL During Photopheresis and Interferon Therapy Transformation of Mycosis Fungoides, clinicopathological and prognostic features of 45 cases Fungoides Foiler Sezary syndrome Pentostatin Treatment of Cutaneous T-Cell Lymphoma Infectious Complications of Cutaneous T-cell Lymphoma (will need Adobe Acrobat reader to open PDF file) Management of Mycosis Fungoides, Part 2 Treatment by Dr Lynn Wilson Association of Erythrodermic Cutaneous T-cell Lymphoma, Super Antigen positive Staphylococcus aureus, and Oligoclonal T-Cell Receptor Gene Expansion (will need Adobe Acrobat reader to open PDF file) Mycosis Fungoides, Facts and Controversies (will need Adobe Acrobat reader to open PDF file) CTCL information in Spanish - Micosis Fungoide/Sindrome de Sezary Agent Orange Info for VVA Information Search Tools: Medlineplus PubMed Medscape - join for free to access a wealth of various medical information resources including many abstracts and articles by MF specialists www.medscape.com WebMD eMedicine Dermatology Times Derm Guide: General Lymphoma Information Lymphoma Research Foundation of America Lymphoma Information Network this page under continual construction by Tom Crabtree tc8671@yahoo.com last updated 07-06-06 Please let me know if you find any dead links. Disclaimer: This site is for general information only. See your Dr for medical advice and treatment. Twenty thousand and |
