The disease is also called Cutaneous T-Cell Lymphoma. It’s a very rare disease in Denmark. It’s cancer in the immune system, and it is usually diagnosed in middleaged men.

It has given me a very hard time to have this disease, first of all because no one really knows about this disease - in Denmark I mean - secondly; I’m not a man, and as I was just 21 years old, when I was diagnosed, I don’t fit into the category at all.

As the disease is in the body for 20-30 years, maybe even more, before it breaks out, I’m convinced that I was born with the disease, which fits perfectly with the 50 bacteria shots I was given, hoping to booste my immune system, as it didnt function the way it was supposed to.

Actually it’s not that strange, come to think about it !

Here I have a list of good URL’s, where you can find info about MF/CTCL, put together by Paul Hedrich, who’s also on the newsgroup, where we all have been diagnosed with MF/CTCL or know someone who has - if you want to subscribe to the list - here is the address :

http://listserv.acor.org

Information: CTCL-MF-request@listserv.acor.org

SPECIFIC INFORMATION ABOUT MF/CTCL

OncoLink cutaneous t-cell lymphoma page:
http://oncolink.upenn.edu/disease/t-cell

PDQ data base-NCI information on mf:
http://noah.cuny.edu/cancer/nci/cancernet/100098.html

Abstracts of articles from Cancetlit database:
http://cancer.med.upenn.edu/cancernet/95/oct/710400.html

The Cutaneous Lymphoma Cooperative Group
Judi VanHorn, Editor
c/o Department of Dermatology
University of Cincinnati
PO Box 670523
Cincinnati, OH 45267-0523

Phone: (513) 558-6805.

This organization provides a quarterly newsletter and will send you a large packet of information re: mycosis fungoides/CTCL.

http://tomsmfctclpage.homestead.com/index.html

http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=8915308&form=6&db=m&Dopt=b

INFORMATION ON SPECIFIC TOPICS PERTAINING TO MF/CTCL

"Malignant Melanoma in Patients Treated for Psoriasis with Methoxsalen (Psoralen) and Ultraviolet A Radiation (PUVA)" --abstract of article in New England Journal of Medicine

by R.S. Stern, et. al.

"Should PUVA be abandoned?"-- Editorial on PUVA and melanoma risk from New England Journal of Medicine by K. Wolff: http://www.nejm.org and click on "Search Past Issues" icon.

Cancernet article on Pruritus (itching). Try http://oncolink.upenn.edu/pdq_html/ Click on section entitled "Cancer Screening, Prevention, and Supportive Care Statement"; Scroll down to chart entitled "Other PDQ Topics"; click on Pruritus

Medline article containing info on mf and histoplasmosis: First go to medscape at http://www.medscape.com
Then register, (it's FREE), by clicking the link at the top of the page.

Then click on: Infectious diseases
Next click on: Keywords link (near top of page)
Next click on: Antifungal
Next click on: Infections in Oncology-Fungal Infections
in Cancer Patients. The article is dated Aug 12, 1996

Article on methotrexate:
http://www.rxlist.com/cgi/generic/mtx.htm

Phototherapy equipment company- PhotoTherapeutiX, 1260 Palmetto Ave., Suite C, Winter Park, FL 32789 (800)-290-7577 Fax: 407-628-4160
http://www.photothrx.com

National Psoriasis Foundation
http://www.psoriasis.org

For VERY graphic pictures of later stage mf/Sezary, consult University of Erlangen (Germany?) photo database:
http://www.erlangen.de/

Then click on button labeled "Gesundheit". (This button is located on the second row from the bottom. The word Gesundheit means Health). Next, click on Kliniken. At the top of the Kliniken page you will see a button labeled Suche. Click it on. (Suche means Search.) You should now be at the Query Interface to the FAU Harvest Server Broker.

Type "mycosis fungoides" (without quotes) into the window. You should get 15 hits. Just click on the highlighted link for each hit. Not that the last one is a general image index.

Article on pathogenesis of ctcl:
http://www.medscape.com

You will need to fill out a registration form to secure a medscape ID and Password to access this information. To get ID and Password, click on the HELP button at the bottom of this page. (It's a bit of work, but worth it.) This database is intended for medical professionals, but is available to consumers as well. Currently, there is no fee.

Once you have registered, return to the original Web page you started with, click on Oncology, then click on current abstracts. Check listings under Abstracts section.

Information about Targretin:
http://www.lymphoma.org/
Click on Clinical Trials Information icon. Then look under Non-Hodgkins T cell.

CLINICAL TRIAL INFORMATION

Link to Seragin clinical trials:
http://oncolink.upenn.edu
Click on Clinical Trials. Then search using the key words fusion toxin.

General clinical trial information at CenterWatch web site:
http://www.centerwatch.com

BioCryst Pharmaceuticals-manufacturers of BCX-34:
http://www.bio.com/

News info on BCX-34
Try just http://www.businesswire.com

Information on Phase I clinical trial to evaluate VIMRxynO (synthetic hypericin) as a topically applied, light-activated therapy for specific skin diseases including psoriasis, cutaneous T-cell lymphoma, warts, and Kaposi's sarcoma.
http://www.vimrx.com
Click on PRESS RELEASES, then click `97 ABSTRACTS

UV PROTECTIVE CLOTHING

SunSmart-A Canadian company:
http://www.interspin.com/

Sun Precautions-an American company:
http://www.solumbra.com/

Toll free number: 1-800-882-7860
Address: Sun Precautions, Inc.
2815 Wetmore Ave.
Everett, WA 98201

GENERAL RESOURCES FOR CANCER

CancerGuide; Steve Dunn's Cancer Information Page: http://cancerguide.org/
One of the BEST general guides to cancer. A MUST read!

Physician's Data Query (PDQ):
http://oncolink.upenn.edu/pdq_html/

Oncolink at University of Pennsylvania:
http://oncolink.upenn.edu/disease/t-cell

Oncolink-general address:
http://oncolink.upenn.edu/

The Leukaemia Research Fund-(BRITISH)
http://phoenix.jr2.ox.ac.uk/LRF/

http://www.cancerpage.com
From leukemia to breast cancer to skin cancer, this ultra comprehensive site is a tremend-ous resource for anyone who is interested in learning more about cancer. It provides the latest information, news, and research relating to cancer prevention, detection, and treatments. A glossary demystifies medical terms with easy-to-understand explanations. An extensive cancer FAQ answers most general questions. But if you can't find an answer there, just go to the Ask a Nurse feature, which lets you email a cancer-related question to a certified Oncology nurse, who will reply within 24 hours. This site also serves as an online community for cancer survivors linked by chat rooms and message boards.

HOSP./UNIVERSITY DEPARTMENTS of DERMATOLOGY, ONCOLOGY, etc.

Arizona health sciences center:
http://www.ahsc.arizona.edu/

John's Hopkins Oncology Center:
http://www.hopkinsmedicine.org/ - search for what you're looking for

M.D. Anderson Hospital, Texas:
http://www.mdanderson.org/

U. of Arkansas Medical Center (UAMC):
http://www.uams.edu/
Department of Dermatology is not on line as yet. For latest phone number and location of Dr. Patrick Carrington, department of Dermatology, (presumed) specialist in mf/ctcl, click on The UAMS Campus Phone Book. Current phone listing is 501-686-5110

U. of Iowa Dermatology Department:
http://tray.dermatology.uiowa.edu/home.html

U. of Michigan Medical Center Department of Dermatology:
http://www.med.umich.edu/derm/index.htm

Yale University Department of Dermatology:
http://info.med.yale.edu/dermatology/

Yale Department of Dermatology-photophoresis info:
http://info.med.yale.edu/dermatology/clinical
Then open directory entitled: photopheresis.html

List of Skin Diseases Research Core Centers:
http://www.nih.gov/niams/reports/directrp.htm

GENERAL INFORMATION ABOUT LYMPHOMA/LEUKEMIA

Lymphoma Research Foundation of America Inc.:
http://www.lymphoma.org/

Mike's Lymphoma Resource Page:
http://www.alumni.caltech.edu/~mike/lymphoma.html

Non-Hodgkin's Lymphoma Page:
http://www.westvirginia.net/~sigley/NHL_Web_Site.htm

Granny Barb's Leukaemia Links:
http://www.acor.org/diseases/hematology/Leukemia/

ARCHIVE AND SUPPORT GROUP INFORMATION

Web page for BMT-Talk:
http://www.ai.mit.edu/

list of support groups-try OncoLink from the U. of Penn:
http://cancer.med.upenn.edu/

Search the Internet for other newsgroups/mailing lists by using Deja News:
http://www.dejanews.com or, by using Reference.com:
http://www.reference.com or, by using Liszt: http://www.liszt.com

MISCELANEOUS LISTINGS

National Library of Medicine:
http://www.nlm.nih.gov/

Merck Manual:
http://www.Merck.com
Be forewarned that this supposedly authoritative tome may contain some outdated and inaccurate survival statistics for mycosis fungoides.

Comprehensive overall Dermatology ressource: Society of Dermatology Physician Assistants
http://www.pacifier.com/~jomonroe
Email: jomonroe@pacifier.com.
Contains link to some 80 Dermatology Web sites

New England Journal of Medicine:
http://www.nejm.org/

FDA (Food and DRUG Administration):
http://www.fda.gov/fdahomepage.html

NORD (National Organization on Rare Disorders):
http://www.pcnet.com/~orphan/

"The Median Isn't the Message" by Jay Gould:
http://cancerguide.org/median_not_msg.html

Discusses the nature of survival statistics and cancer and why we should NOT pay as much attention to them as we ordinarily do. Written by a renowned scientist and 15 year survivor of mesothelioma, formerly considered a virtually nonsurvivable cancer. EVERY CANCER PATIENT SHOULD READ THIS FIRST!!

"Confronting Cancer Through Art"; an online exhibition:
http://www.oncolink.upenn.edu/.

Health Information Highway:
http://www.stayhealthy.com/index.htm
Contains lots of interesting medical links.

WALGREEN nationwide RX service:
1-800-Walgreen ( 1-800-925-4733)
WALGREEN's Home page:
http://www.walgreens.com/default.jhtml

Information concerning employment discrimination and cancer:
http://www.usdoj.gov/crt/ada/adahom1.htm

The Foundation for Infinite Survival- This is a life-extension organization. But do not be put off by the "wierdness" of it. Check it out for their info services:
http://fis.org/index.html

GENERAL HEALTH INFO DATABASES

Women's Health Weekly Public Database:
http://www.newsfile.com/homepage/psearch.htm

RxList-searchable index on drugs and medication interactions:
http://www.rxlist.com

The Health Gazette:
http://www.freenet.scri.fsu.edu/HealthGazette/gazette.html

The Virtual Hospital:
http://www.vh.org/

HealthAnswers:
http://www.healthanswers.com

HealthGate-general health information + Healthgate-free access to medline and cancerlit databaases as well as general health information:
http://www.healthgate.com/

HealthWorld Online-general health information:
http://www.healthy.net

Medical Matrix-for general medical information:
http://www.medmatrix.org/

AOL NETFINDs-a new web search engine that is available to members and non members:
http://www.aol.com/netfind

Healthfinder-provides reliable health info with links to more than 550 other Web sites, links to on line documents, including health publications and technical literature. Connection to on-line discussion and self help groups. Data bases that can be searched by topic: and FAQS on selected topics:
http://healthfinder.gov

Reuters medical news website:
http://www.reutershealth.com

AMA Medical News Site
http://www.ama-assn.org/insight/

Here is a web addresses for free searching of Medline:
http://www.ncbi.nlm.nih.gov/PubMed/