PUVA is the treament I was given for my MF. When you get treated with PUVA, you take a tablet (Psoralen) a certain amount of hours before you get exposed with UVA light. - There are certain guidelines, one has to look out for before, under and after the treatment. You can get these guidelines from National Psoriasis Foundation. The address is on the URL list - there you can also find addresses for more info on PUVA.

I received treatments 4 times a week for apx. 1 year. Then one day I all of a sudden turned extremely sick after the treatment. The treatment with PUVA was stopped, and then I got radiation therapy on the spots, when they were *acitive*..

Unfortunately I was not told - back in 1978 - what kind of disease MF/CTCL really is, nor did they tell me that the treatment I received was a type of chemo therapy (Photochemo therapy). Later I have also learned that I was not protected correctly neither before, under, nor after the treatment. Therefor I have tried to find out, what kind of damage the lack of protection have caused of damages to my body. Unfortunately there is no one, who can tell me that.

I wasn’t offered any alternative ways of treament - the doctor told me that I was going to be treated with PUVA - period - and I did what the doctor ordered. IF the doctors knew about alternative treaments back then, I really don’t know - but from the newsgroup I have learned that today there are.

Do therefor get propper information about alternative treatments; find out about side effects from the different kinds of treatments, and make sure to be correctly protected in case the treatment is/will be PUVA.

The worst part of it all is that no matter which treatment you choose, it’s not a healing treatment - it’s only treating the symptoms. MF/CTCL is a disease you will have to learn to live with for the rest of your life.

It’s still unknown what causes the disease, so please come back and visit, as I will continue - with a good help from Paul Hedrich - to keep the URL list up to date, so you can find the latest news in research and other interesting areas.

Here I have a list of good URL’s, where you can find info about PUVA and 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.

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/public/1997/0336/0015/1090/1.htm or http://www.nejm.org and click on "Search Past Issues" icon.

Cancernet article on Pruritus (itching). Note, especially, the section called INTERVENTIONS:
http://www.noah.cuny.edu/qksearch.html Click on CANCER; look under Symptoms; Click on PRURITUS
or 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

Thrive@Health Medical Database-For brief article on pruritus type "pruritus" into search engine window. Look for article entitled "Postgraduate Medicine 1996 Jan: Treating pruritus":
http://pathfinder.com/thrive/health/lookitup.html

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

Abstract of article on Breast Implants and ctcl:
http://www.newsfile.com/protect/women/public/2383673.htm

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

Article: Clinical Applications of All-Trans-Retinoic Acid in Hematologic Malignancies- includes a brief description of the use of retinoids in the treatment of mycosis fungoides:
http://daisy.moffitt.usf.edu/cancjrnl/v2n6/
Click on document entitled pharmacotherapy.html

Abstract of article on long term risks of Retinoid therapy from the Archives of Dermatology:
http://www.ama-assn.org/sci-pubs/journals/archive/derm
Follow links to vol_131/no_11/abstract.htm

"Focus On... The New Immunology": a general article on interferons and interleukins. (No mention made of their use for mf):
http://pharminfo.com/cgi-bin/print_hit_bold.pl/pubs /msb/new_imunol.html?Immunology#first_hit or
http://pharminfo.com/pin_hp.html or
http://pharminfo.com/search_pin.html and enter interferon into the search window.

Article on Thymopentin and its use for Sezary Syndrome:
http://pharminfo.com/pubs/transgen/tg_thym.html#tg_2_ther_derm or
Access the pharminfo-database search engine at http://pharminfo.com/search_pin.html
Type in thymopentin. Then click on Thymopentin Review.
An excerpted version is available in our archives. Just enter the Web address, (the line above that begins with http), into the top window of LSoft`s Search Page.

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

NPF (National Psoriasis Foundation) article on uva/uvb:
http://www.psoriasis.org/pharmnews/8-2/uva_uvb.html

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.

Information on various hypotheses for development of mf:
http://info.med.yale.edu/cgi-bin/wwwwais

Just enter the key words "mycosis fungoides". Leave the index set at SEARCH THE YALE-NEW HAVEN MEDICAL CENTER WEB. Then select the first article entitled

Lynn_D._Wilson_M.D._M.P.H..html

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.

Seragen home page:
http://www.netsci.org/Resources/Biotech/Seragen/top.html

News story about fusion toxin treatment for mf/ctcl:
http://wlbt.teclink.net/health/fusion.html
Contains some misleading info.

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

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

News info on BCX-34
http://www.businesswire.com/webbox/bw.050396/106392.htm
or 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/sunsmart/index.htm

Sun Precautions-an American company:
http://www.solumbra.com/presltr.htm
or, for their home page
http://www.solumbra.com/sphome.htm#home

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!

Database of information on cancer and other topics:
http://seidata.com/ Hit PIT button, then hit NetWellness button.
Also try http://seidata.com/marriage/rcancer.html But it may no longer be active.

Another large database of information on cancer:
http://www.noah.cuny.edu/qksearch.html Click on CANCER

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/

Pharminfonet Cancer Disease Center:
http://pharminfo.com/disease/cancer_db.html

Cancer Care:
http://www.cancercareinc.org

The Leukaemia Research Fund-(BRITISH)
http://phoenix.jr2.ox.ac.uk/LRF/ Also check out: http://www.leukaemia.demon.co.uk/websites.htm

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

List of medical schools worldwide that are online:
http://www.noacsc.ohio.gov/mercer/pw/phs/medschol.htm

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

Boston U. Medical Center Department of Hematology-Oncology:
http://med-med1.bu.edu/oncol.html

H. Lee Moffitt Cancer Center in Tampa Florida:
http://daisy.moffitt.usf.edu/

John's Hopkins Oncology Center:
http://www.med.jhu.edu/cancerctr/hematol/hemmain.htm

M.D. Anderson Hospital, Texas:
http://www.mdacc.tmc.edu/~immuno/duvic.html

Mie University Department of Dermatology, Japan:
http://www.medic.mie-u.ac.jp/derma

for campus phone number to Stanford U. mf clinic see:
http://directory02.stanford.edu/virtual/campusinfo/ or
http://www-directory.Stanford.ORG/virtual/campusinfo/ Search database using key words: mycosis fungoides

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 Cinncinatti
http://www.med.uc.edu/htdocs/medicine/uccom.htm
Dermatology department is on line, but no information is available on mf support group. Also see Barrett Cancer Center. In addition, many health related links.

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

Article by Lynne Lamberg entitled: "Online Support Group Helps Patients Live With, Learn More About the Rare Skin Cancer CTCL-MF", in May 14, 1997 issue of The Journal of the American Medical Association, (pages 1422-23). Full text is available online at the AMA website:
http://www.ama-assn.org/jama
You need to register at the website (it's free), then click on "latest issue" or select May 14, 1997 from the list, or check their archives

Archives of all the cancer lists:
http://cure.medinfo.org/

Web page for BMT-Talk:
http://www.ai.mit.edu/people/laurel/Bmt-talk/bmt-talk.html

Web page for Hem/Onc:
http://walden.mo.net/~lackritz/hemonc.html

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

Table of contents for 18 Dermatology journals:
http://www.info-med.co.uk/adref/derm/derm_t.htm

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/index.html

Traveling far from home for treatment? Check out the National Association of Hospital Hospitality Houses Inc.:
http://visit-usa.com/hhh/

Information concerning employment discrimination and cancer:
http://www.aomc.org/cancerandADA.html and 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

Oncolink article on doctor patient communication-"Words that Heal, Words that Harm":
http://www.access.digex.net/~mkragen/healharm.html

Talking Books, a commercial site, offers a biography of actor Paul Eddington, who had mf:
http://www.orma.co.uk/catnonf.htm#eddington

Melatonin information, commercial site:
http://www.teleport.com/~jor/
Note that people with lymphoma are advised NOT to use Melatonin.

Articles on hypnosis:
http://pathfinder.com/@@XhQ37AYAnZorR3a2/thrive
Click on Look-it-up database, then use keyword: hypnosis

Information on Essiac:
http://www.livelinks.com/sumeria/

GENERAL HEALTH INFO DATABASES

Interactive Patient Help File:
http://medicus.marshall.edu/help
Check out parent directory.

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

U.S. Government Department of Health and Humam Services:
http://odphp2.osophs.dhhs.gov/consumer.htm

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

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

HealthAnswers:
http://www.healthanswers.com

Columbia Health Care "Virtual Body" and "Virtual Hospital":
http://www.columbia.net

MedAccess-general health information as well as details on physicians and nursing homes:
http://www.medaccess.com

Mayo Health Oasis-general health information:
http://www.mayo.ivi.com

HealthGate-general health information:
http://www.healthgate.com

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

Thrive-general health information
http://www.pathfinder.com/HLC

Medsite Navigator:
http://www.MedsiteNavigator.com/

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

Today's Research News:
http://biomednet.com./hmsbeagle/

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 are some web addresses for free searching of Medline:
http://www.ncbi.nlm.nih.gov/PubMed/
http://www.healthgate.com/Healthgate/MEDLINE/search.shtml
http://www.medscape.com/misc/FormMedlineInfLive.html
http://biomednet.com/db/medline