Sygdommen bærer også navnet Cutant T-Celle Lymphom. - Det er en i Danmark meget sjælden sygdom. Det er cancer i immun system, og den rammer hovedsageligt midaldrende mænd.

Det gør det utrolig besværligt for mig at have denne diagnose, for det første fordi ingen rigtig ved noget om sygdommen - altså i Danmark - og for det andet, så er jeg ikke en mand, og da jeg var 21 år gammel, da jeg blev diagnostiseret, så falder jeg fuldstændig udenfor normerne for sygdommen.

Da sygdommen eksisterer i kroppen i 20-30 år, måske mere, før den går i udbrud, så er jeg overbevist om, at jeg er født med sygdommen, hvilket jo falder meget godt sammen med de ca. 50 bakterieindsprøjtninger, man gav mig, i håbet om at booste mit immunforsvar, for det virkede ikke.

Det er jo egentlig ikke så underligt !

Da der ikke findes noget på dansk, er her listen over gode adresser, hvor du kan få mere at vide om sygdommen, som Paul Hedrich har samlet. Paul er også på den nyhedsgruppe, hvor vi alle har diagnosen MF/CTCL eller kender nogen, der har den. Hvis du er interesseret i at vide mere om listen, her er adressen:

http://listserv.acor.org

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

Her kan du læse mere om MF/CTCL of PUVA

SPECIFIK INFORMATION OM MF/CTCL AND PUVA PÅ ENGELSK

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 OM SPECIFIKKE EMNER DER RELATERER TIL MF/CTCL PÅ ENGELSK

"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:

1. First go to medscape at http://www.medscape.com
2. Then register, (it's FREE), by clicking the link at the top of the page.
3. Then click on: Infectious diseases
4. Next click on: Keywords link (near top of page)
5. Next click on: Antifungal
6. 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,

1. consult University of Erlangen (Germany?) photo database: http://www.erlangen.de/
2. Then click on button labeled "Gesundheit". (This button is located on the second row from the bottom. The word Gesundheit means Health).
3. Next, click on Kliniken.
4. 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.
5. 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.

INFORMATION OM KLINISKE UNDERSØGELSER PÅ ENGELSK

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 BESKYTTENDE BEKLÆDNING PÅ ENGELSK

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

GENERELLE KILDER OM CANCER PÅ ENGELSK

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.

HOSPITALER/UNIVERSITETS AFDELINGER i DERMATOLOGI,ONCOLOGI PÅ ENGELSK

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

John's Hopkins Oncology Center:
http://www.hopkinsmedicine.org/ - foretag derefter en søgning via søgefeltet

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

GENEREL INFORMATION OM LYMPHOMER/LEUKEMI PÅ ENGELSK

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/

ARKIV OG SUPPORTGRUPPE INFOMATION PÅ ENGELSK

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

DIVERSE HENVISNINGER PÅ ENGELSK

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

GENERELLE HELBREDSINFORMATIONS-DATABASER PÅ ENGELSK

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 address for free searching of Medline:
http://www.ncbi.nlm.nih.gov/PubMed/