Google Answers: Expert Diagnosis & Treatment of Juvenile Patch Stage Mycosis Fungoides

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Subject: Expert Diagnosis & Treatment of Juvenile Patch Stage Mycosis Fungoides
Category: Health > Conditions and Diseases
Asked by: akshayshah-ga
List Price: $200.00

Posted: 07 Mar 2004 07:21 PST
Expires: 06 Apr 2004 08:21 PDT
Question ID: 314227

I would like to find out the contact details of medical institutions &
doctors in USA, Canada, United Kingdom, India, South Africa & Dubai that
specialise in diagnosis & expert treatment of juvenile patch stage
mycosis fungoides (which my 6yr old son has recently been diagnosed
with).

Request for Question Clarification by crabcakes-ga on 08 Mar 2004 18:33 PST

Hello akshayshah,

I wanted to let you know I am working on your question! I'm having
difficulty locating much in South Africa and India. I'm still working,
and will post as soon as I am finished!

Thank you,
crabcakes

Answer

Subject: Re: Expert Diagnosis & Treatment of Juvenile Patch Stage Mycosis Fungoides
Answered By: crabcakes-ga on 08 Mar 2004 21:38 PST

Hi akshayshah, I?m sorry to hear about your son?s diagnosis. The good news is that this is almost always a treatable disease, with a lot of excellent research being carried out. Most folks diagnosed with this condition live out a normal lifespan, with proper treatment. According to the Fox Chase Cancer Center, about 16,000 people in the United States are diagnosed each year with mycosis fungoides, also known as cutaneous T-cell lymphoma, or CTCL, and sometimes called MF. Something to consider when going through this list of hospitals, is that some hospitals categorize CTCL under the Department of Dermatology, while others place it under the heading of Cancer, Lymphomas, or Hematology/Oncology (Heme/Onc) While researching your question, I found very little information about hospitals/doctors in South Africa, Dubai and India. While I?m sure one can find CTCL treatment in these countries, they seem to keep this information private. I have sent off e-mails to many hospitals, and several have been returned already as invalid e-mail addresses. I believe you may find a level of care more to your liking in Canada, the UK, or the US. I am not saying care, good care, cannot be found in the other countries, but information and arrangements are easier to come by on UK, US, and Canadian sites. If English is not your native language, many of the larger hospitals I?ve listed have interpreters, or access to interpreters by phone. This may not be available in India, Dubai, or South Africa. United States ======================================================================== California Map of California (You can click on the map to zoom in) http://www.cnn.com/TRAVEL/CITY.GUIDES/US/california/ Oncology Hematology Consultants 2653 Elm Avenue Long Beach, California Voice (562) 595-7335 Fax (562) 595-8136 e-mail office@ohc-med.com http://www.ohc-med.com/wedo.htm http://www.ohc-med.com/office.htm Dr. Robert Nagourney came highly recommended by patients with mycosis fungoides. Dr. Nagourney is board certified in internal medicine, oncology, and hematology. ?An active researcher, Dr Nagourney directs laboratory investigations at Rational Therapeutics Laboratory in Long Beach? http://www.ohc-med.com/nagourney.htm Southbay Oncology Hematology Partners 50 E. Hamilton Avenue, Suite 200 Campbell, CA 95008 (408) 376-2300 http://www.mdidocs.com/southbay.htm Dr. Martin Rubenstein came recommended by his patients. Dr. Rubenstein is the Medical Director of O'Connor Hospital Cancer Center and a graduate of Stanford University http://www.mdidocs.com/mrubenstein.htm Colorado -------------------- Map of Colorado http://www.cnn.com/TRAVEL/CITY.GUIDES/US/colorado/ University of Colorado treats mycosis fungoides as a specialty under the Department of Dermatology. UCHSC 4200 E. Ninth Ave. Denver, CO 80262 303-372-0000 http://upi.uchsc.edu/prp_derma.html http://uch.uchsc.edu/medicalspecialties/index.html#M http://uch.uchsc.edu/ Connecticut ------------------- Map of Connecticut (Click on the map to zoom in) http://www.cnn.com/TRAVEL/CITY.GUIDES/US/connecticut/ Yale-New Haven Hospital Yale-New Haven Hospital 20 York Street New Haven, CT 06510-3202 Dermatology (203) 785-6445. Admitting (203) 688-3331 http://www.ynhh.com/cancer/why_ynhh/index.html http://www.ynhh.org/ http://www.ynhh.org/press/1996/tcell.html Yale-New Haven can help you select a doctor, by filling out this form: http://www.ynhh.com/findphys.html Illinois ------------- Map of Illinois http://www.cnn.com/TRAVEL/CITY.GUIDES/US/illinois/ Rush Cancer Institute 1725 W. Harrison Chicago, IL 60612 Phone: (800) 224-7874 This site is written in frames, which means I can?t supply you with direct links to each page. Use the menu in the left hand column to find further information by clicking on ?Lymphoma? Dr. Gregory (no further information found) was recommended by his patients. Dr. Stephanie Gregory ,Director, Section of Hematology andLymphoma Center, Director of the Comprehensive Bone Marrow Clinic http://www.rushcancer.org/ Massachusetts ------------------- Map of Massachusetts (Click on map to zoom in) http://www.cnn.com/TRAVEL/CITY.GUIDES/US/mass/ Dana-Farber Cancer Institute 44 Binney Street Boston, MA 02115 Lymphoma Program http://www.dana-farber.org/pat/adult/treatment/hematologicmalignancies/lymphoma.asp You will see on this page, that the Heme/Onc Clinic handles non-Hodgkin?s lymphomas, under which mycosis fungoides falls. http://www.dana-farber.org/pat/adult/treatment/hematologicmalignancies/diseasestreated.asp Dr. Robert J. Soiffer is in charge of the lymphoma clinic. (617) 632-6139 http://www.dana-farber.org/pat/adult/treatment/hematologicmalignancies/contactinformation.asp Appointments: (888) 733-4662 Dana Farber General Number (866) 408- 3324 Inquiries in Spanish: (617) 632-3673 All Other Languages: (617) 632-6366 TDD (for deaf persons): (617) 632-5330 Beth Israel Hospital 330 Brookline Ave. Boston, MA 02215 (617) 667-5886 or (617) 667-7000 FAX: (617) 667-4533 Email: mkadin@bidmc.harvard.edu http://www.bidmc.harvard.edu/default.asp?node_id=606&leaf_id=396 http://www.bidmc.harvard.edu/default.asp?node_id=606&leaf_id=396 Contact Information http://www.bidmc.harvard.edu/default.asp?node_id=1162 Directions: http://www.bidmc.harvard.edu/default.asp?node_id=606&leaf_id=396 Minnesota -------------- Map of Minnesota (Click on map to zoom in) http://www.cnn.com/TRAVEL/CITY.GUIDES/US/minnesota/ Mayo Clinic 200 First St. S.W. Rochester, MN 55905 General Number (507) 284-2111 General Fax (507) 284-0161 Appointment Office (507) 284-2111 International Appointment Services(507) 284-8884 International Appointment Services Fax (507) 284-3891 http://www.mayoclinic.org/tcelllymphoma-rst/appointments.html This Mayo Clinic site page describes some of the treatments of Cutaneous T-Cell lymphoma (mycosis fungoides) http://www.mayoclinic.org/tcelllymphoma-rst/index.html North Carolina --------------------- Map of North Carolina http://www.cnn.com/TRAVEL/CITY.GUIDES/US/ncarolina/ Duke University Medical Center, DUMC Duke University Medical Center Trent Drive Durham, North Carolina 27710 (919) 684-8111 Oncology Department, DUMC 3100 Tower Blvd., Ste. 600 Durham, NC 27707 419-5500 Fax 493-3234 http://www.dukehealth.org/DukePhysicians/PhysicianSpotlight/physicianspotlights/physician_spotlight_20031211100008465 DUMC Department of Immunology http://immunology.mc.duke.edu/fac_sec_haynes.htm Duke University Medical Center Dr. Jerald Gong Box 3712 DUMC Durham, NC 27710 (919) 684-4502 (919) 684-1856 https://faculty.duke.edu/faculty/info?pid=5147 Trial treatments at Duke University Elise A. Olsen, MD, Duke University Medical Center, Box 3294, Durham, NC 27710 Email olsen001@mc.duke.edu http://news.mc.duke.edu/experts/detail.php?id=46 http://www.jco.org/cgi/content/abstract/19/2/376 Ohio --------------- Map of Ohio http://www.cnn.com/TRAVEL/CITY.GUIDES/US/ohio/ University of Ohio A Pavilion/University Hospital 234 Goodman Street Pavilion A, Third Floor Cincinnati, Ohio 45267-0523 http://www.med.uc.edu/departme/dermatol/Dermsubpages/subpagepatientservices.htm Appointments: (513) 475-7630 Contact person: Judi Van Horn, RN Department of Dermatology University of Cincinnati PO Box 670523 Cincinnati, OH 45267-0523 A Pavilion/University Hospital 234 Goodman Street Pavilion A, Third Floor Cincinnati, Ohio 45267-0523 http://www.med.uc.edu/departme/dermatol/Dermsubpages/subpageCTCL.htm Maps: http://www.med.uc.edu/departme/dermatol/Dermsubpages/subpageofficelocations.htm Pennsylvania ------------------- Map of Pennsylvania http://www.cnn.com/TRAVEL/CITY.GUIDES/US/pennsylvania/ Fox Chase Cancer Center 333 Cottman Avenue Philadelphia, PA 19111-2497 1-888-369-2427 http://www.fccc.edu/ Dr. Stuart R. Lessin is a CTCL specialist at Fox Chase http://www.fccc.edu/physician_directory/medical/lessin.html http://www.fccc.edu/news/2002/Targretin-01-22-2002.html Travel information http://www.fccc.edu/information/directions.html Dr. Mitchell Smith came recommended by his patients, at Fox Chase. e-mail Mitchell.Smith@fccc.edu Lodging in the area: http://www.fccc.edu/lodging/ Tennessee ---------------- Map of Tennessee http://www.cnn.com/TRAVEL/CITY.GUIDES/US/tenn/ St. Judes?s Children?s Hospital 332 North Lauderdale Street Memphis, Tennessee USA, 38105-2794 Tel. (901) 495-2891 Fax: (901) 495-3122 http://www.stjude.org/ http://www.charitywire.com/charity2/ St. Jude?s has an International Outreach Program, with help in the Middle East, and countries such as Venezuela, Chile, Mexico, Brazil, Morocco, China, Russia, and more. See this page: http://www.stjude.org/international-outreach/0,2564,455_3928,00.html Texas ---------- Map of Texas (Click on map to zoom in) http://www.cnn.com/TRAVEL/CITY.GUIDES/US/texas/ The University of Texas MD Anderson Cancer Center http://www.mdanderson.org/ MD Anderson has a Child and Adolescent Center where medical care is delivered in a special, child oriented manner. http://www.mdanderson.org/care_centers/childandadol/ Dr. Madeline Duvic, a Duke University Graduate, is a specialist in CTCL at MA Anderson. http://www.mdanderson.org/departments/immunology/display.cfm?id=a8baa4be-2ce6-4a89-b00244fbaaafc0e5&pn=44fb8019-52d7-4195-a4685d3dc85a2b92&method=displayfull Contact Information and sign up for newsletters regarding mycosis fungoides http://www.mdanderson.org/contact_us/ To start a New Patient Self Referral form, click this link: https://www2.mdanderson.org/sapp/contact/sreferral.cfm After MD Anderson receives and processes your form, they will contact you, and ask that you have this information ready: � Patient name, telephone number and insurance information � Referring physician's name, office address, telephone and fax numbers � Diagnosis � Date of diagnosis � How the diagnosis was made (physical exam, biopsy, other) � What treatment, if any, has taken place � Over what time period the treatment has occurred Please be aware that while Dr. Duvic is in charge of CTCL research, you may not get an appointment with her. There are other specialists under her who may treat your child. I would feel confident with anyone being overseen by her. Some of the other specialists and fellows at MD Anderson are Seth J. Corey, M.D., M.P.H. Steven Culbert, M.D. Ren�e M. Madden, M.D. Irma Ramirez, M.D. Michael E. Rytting, M.D. If you prefer, you can have your doctor fill out the physician?s referral form here: https://www2.mdanderson.org/sapp/contact/preferral.cfm It would probably increase your chances of getting an appointment here, if your doctor fills out the form. MD Anderson is also running clinical trials, if you were interested: Dr. Madeleine Duvic The University of Texas M. D. Anderson Cancer Center 1515 Holcombe Boulevard Houston, TX 77030 713-745-1113 800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.) http://utm-ext01a.mdacc.tmc.edu/dept/prot/clinicaltrialswp.nsf/index/dm00-402 Washington State ----------------------- Map of Washington State (Click on map to zoom in) http://www.cnn.com/TRAVEL/CITY.GUIDES/US/washington/ Fred Hutchinson Cancer Research Center 1100 Fairview Avenue N., D1-100 P.O. Box 19024 Seattle, Washington 98109-1024 United States http://www.fhcrc.org/ Conditions treated at Fred Hutchinson http://www.fhcrc.org/patient/treatment/types_dis_tx.html Department head, Dr. Irwin Bernstein http://www.leukemia-lymphoma.org/all_page?item_id=223685 Dr. David G. Maloney is a CTCLspecialist, recommended by his patients. http://myprofile.cos.com/MALONEY1 Dr. Maloney?s contact information: Phone: (206) 667-5616 Fax: (206) 667-6124 e-mail dmaloney@fhcrc.org ============================== Canada ---------------- Map of Vancouver http://www.mapquest.com/maps/map.adp?country=US&address=&city=Vancouver&state=WA Map of Montreal http://musicm.mcgill.ca/netads/http/mtlreg1.html Children?s Hospital, part of McGill University 2300 Tupper Street Montreal, Quebec H3H 1P3 Telephone: (514) 412-4400 www.thechildren.com http://www.thechildren.com/change.asp?l=e&s=Care&c=dep Information Desk http://www.thechildren.com/change.asp?l=e&s=Desk&c=main See a virtual tour of the facilities http://www.thechildren.com/matpat/index.html Contact: (514) 412-4445 Department members: Dr. Petr Kavan, Director Dr. Sharon Abish Dr. Louise Chevalier Dr. Aida Daoud Dr. David Mitchell Dr. Sophie-Anne Carret Dr. Stephanie Reiter McGill University Health Center Montreal Fax (514) 934-8288 http://www.muhc.ca/about/ BC Cancer Agency Executive and Provincial offices Suite 400, East Tower 555 West 12th Avenue Vancouver, BC V5Z 3X7 Canada +1 (604) 877-6000 +1 (604) 877-6146 (fax) Dr. Joseph M. Connors came recommended by his patients, and is affilitated with this hospital. (I could find no direct number for this doctor, but calling the general number may help locate him) http://www.bccancer.bc.ca/PPI/TypesofCancer/MycosisFungoides/default.htm http://www.bccancer.bc.ca/ABCCA/default.htm It appears that Canadian Hospitals take Canadian citizens as a priority. You can fill out a request form here: http://www.bccancer.bc.ca/ContactUs.htm United Kingdom -------------------------- Dr. George Mikhaeel, Oncology and lymphoma Specialist Tel: 020 7928 9292 ext 2044 Fax: 020 7928 9968 http://www.specialistinfo.com/consget.php?con=mikhonco01 Dr. Mikhaeel is affiliated with London Bridge Hospital, Emblem House, 27 Tooley Street, London SE1 2PR Tel: 020 7407 3100 FAX: 020 7407 3162 Map http://www.streetmap.co.uk/newmap.srf?x=532939&y=180334&z=0&sv=SE1%202PR&st=PostCode&lu=N&tl=GP%20Specialist%20Info%20Ltd%20-%20LONDON%20BRIDGE%20HOSPITAL&ar=y&bi=~&mapp=newmap.srf&searchp=newsearch.srf St. John's Institute of Dermatology King's College London, Strand, London WC2R 2LS, England, United Kingdom. Tel: +44 (0) 20 7836 5454 or 800-964-5836 http://www.kcl.ac.uk/depsta/medicine/dermatology/index.html http://omni.ac.uk/whatsnew/detail/3021025.html St. Thomas Hospital Lambeth Palace Rd. London SEI 7EH 020 7188 7188 http://www.guysandstthomas.nhs.uk/index.htm Contact them using this form: http://www.guysandstthomas.nhs.uk/web_forms/contactus/contactus.asp Kings College is affiliated with St. Thomas Hospital, and does treat CTCL. St. Thomas' Hospital Skin Cancer Unit, 4th Flr, Block 7, South Wing, Division of Skin Sciences, Lambeth Palace Road, London SE1 7EH Telephone +44 (0) 207 928 9292 Ext1964 Fax +44 (0) 207 922 8138 http://www.kcl.ac.uk/depsta/medicine/dermatology/cancer/research.html A campus map http://www.kcl.ac.uk/depsta/medicine/dermatology/cancer/visitor_info.html York House, a London South Thames Private Hospital 199 Westminster Bridge Road, London SE1 7UT Tel: 020 7928 5485 FAX: 020 7928 3748 http://www.specialistinfo.com/data2/ZLSTH8.html Map http://www.streetmap.co.uk/newmap.srf?x=530871&y=179610&z=0&sv=SE1%207UT&st=PostCode&lu=N&tl=GP%20Specialist%20Info%20Ltd%20-%20YORK%20HOUSE&ar=y&bi=~&mapp=newmap.srf&searchp=newsearch.srf Dr. Robert Carr is a heme/onc specialist affiliated with York House. (No telephone yet listed) http://www.specialistinfo.com/consget.php?con=carrhaem02 St. George?s Hospital Medical School University of London Cranmer Terrace, London, SW17 ORE 020-8672-9944 Department of Oncology Head of Department Professor Angus G Dalgleish e-mail: a.dalgleish@sghms.ac.uk http://www.sghms.ac.uk/Departments/ogem.htm http://www.sghms.ac.uk/ Nottingham City Hospital Hucknall Road, Nottingham, NG5 1PB Phone 0115 969 1169 http://www.ncht.org.uk/ Contact Information http://www.ncht.org.uk/contact.html Finding the hospital http://www.ncht.org.uk/findus.html Andy Haynes, Consultant Haematologist, was recommended by his patients. Amersham Hospital Whielden Street, Amersham, Buckinghamshire, HP7 0JD Telephone: 01494 526161 http://www.nhs.uk/root/localnhsservices/orgs/mainSite.asp?id=RXQ51 Dr. Ravi Ratnavel is a CTCL specialist at Amersham Hospital http://www.lymphoma.org.uk/support/Factfiles/Skinlymphomas-anoverview.htm http://www.bucksnhsjobs.co.uk/amershamhosp.html India --------------------- The following hospital is the only one I was able to find that may be able to treat CTCL. I have written an e-mail requesting information. Most hospital sites did not list their specialties, and had broken links, if the hospital had a web site at all of their own. Kidwai Memorial Institute of Oncology Dr. M.H Marigowda Road, Bangalore - 560029,Karnataka , India . Telephone : 091-080-6560708(14 lines) Fax:091-080-6560723 kidwai@kar.nic.in http://www.kar.nic.in/kidwai/ Using ducksoup.com hospital finder, no hospitals appeared under ?India? and ?Oncology? http://www.hospitalsoup.com/rn/asp/CountryID.225/HCategoryid.11/pt/ad_hospitalsearch.asp?NotFound=1 South Africa -------------------------- I had very poor luck searching for treatment in South Africa. Most sites did not indicate what their specialties were. Of the sites that did list specialties, only the sites I have included even had dermatology and/or oncology departments. Many sites had broken links and invalid e-mail addresses. Of the 15 hospitals I researched, these were the only ones that may have potential. While I?m certain treatment for CTCL must exist in South Africa, it is not readily available. I have sent off numerous e-mails, and will post the results should I get a reply. While composing this answer, I have already gotten back two invalid e-mail address errors. Wilgers Hospital has an oncology department, but their site makes no specific reference to CTCL Wilgers Hospital Denneboom Road Wilgers Ext. 14 Pretoria 0040 Mailing Address P O Box 73928 Lynnwood Ridge 0040 Phone 012 807 0019 Fax 012 807 0375 The e-mail listed on the site is an invalid address, which I found out after I wrote to the address. St. Georges Hospital 40 Park Drive Port Elizabeth 6001 P O Box 12051 Moffat Place 6002 Phone 041 392 6111 Fax 041 392 6000 e-mail Janet.Young@afrox.boc.com The following hospitals were said to treat CTCL, but I found no evidence online. I have sent inquiries. Arwyp Medical Centre (If you have sound on, you may hear beeps coming from this site-don?t be alarmed!) http://www.arwyp.com/ Bedford Gardens Private Hospital, Gauteng Physical Address: 7 Leicester Road Bedford Gardens Bedfordview 2008 Mailing Address P O Box 751052 GARDEN VIEW 2047 Phone 011 677 8500 Fax 011 622 2494 e-mail Janet.Young@afrox.boc.com http://www.hasa.co.za/index.asp?t=ie Mayo Clinic of South Africa http://www.mayoclinic.co.za/ Dubai -------------------- Finding information about Dubai hospitals was similar to finding information in South Africa. There seem to be quite a few hospitals in Dubai, but few list any information. Most have broken links, and some hospitals have no web sites, or they appear to be down or dead. NMC Hospital lists a dermatology department. I have e-mailed them. P.O. Box - 7832 Dubai, U.A.E. Tel : +971-4-689800 Fax: +971-4-682353 nmchospt@emirates.net.ae http://www.nmc.co.ae/index.html http://www.nmc.co.ae/Hospital/Dermatology/dermatology.html This is the contact page for NMC http://www.nmc.co.ae/Contact_Us/contact_us.html New Dubai Medical Center +9714-2714444 No site for this hospital found. The site below refers to the architecture! http://archnet.org/library/sites/one-site.tcl?site_id=1313 Al Salama Hospital - it appears that this hospital may treat CTCL, but it is not stated on its site. Many links on this site are broken. (The HOME button is also broken, along with the Arabic language link) I requested more information through their contact page. http://www.alsalamahospital.com/clinics1.htm#Dermatology This is an archived site, with a little more information, also containing broken links. http://www.alsalamahospital.com/archive.html American Hospital, Dubai. This hospital does not include oncology nor dermatology among its specialties. American Hospital P.O.Box: 5566, Dubai, UAE Tel: 00971 4 33 67 777 Fax: 00971 4 33 65 176 http://www.ahdubai.com/ Al Noor Hospital does not list oncology or dermatology as specialties. http://www.alnoorhospital.com/ A list of Dubai Hospitals. Most of these have no web sites, or are broken links. http://www.godubai.com/citylife/hospitals.asp?user_id=&s_id= Another list of Dubai hospitals. http://www.adcci.gov.ae/pls/uaecontacts/contact_uae_list.act_result?category=19 Additional Information: ----------------------- Mycosis Fungoides Foundation http://www.mffoundation.org/CTCL_treatments.html All about lymphomas Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org/all_mat_toc.adp?item_id=9846&cat_id=1214 Subscribe to a free newsgroup on mycosis fungoides listserv@home.ease.lsoft.com As someone who is familiar with identifying cells found in CTCL, I find this site useful and informative. Many patients with CTCL that came to the Heme/Onc clinic in which I worked became as familiar with laboratory terminology and values as I was! You may find this site, all about lab tests used to diagnose and evaluate mycosis fungoides interesting. Lymphomation http://www.lymphomation.org/tests-diag.htm The above site has a page with doctors who were recommended by their patients. This page states ?The primary criteria for entry into this list is that your oncologist has demonstrated an ability to be a partner in your care and that he or she communicates your treatment options effectively? Some on my list above were culled from this site: Lymphomation http://www.lymphomation.org/docs.htm#patient-recommended-docs This site has lots of information on recent research on CTCL The Doctor?s Doctor http://www.thedoctorsdoctor.com/diseases/mycosis_fungoides_tx.htm This site offers dozens of links to other CTCL sites: http://www.edae.gr/mycosis-fungoides.html akshayshah, I realize this list does not include EVERY hospital in the specified countries. I chose the medical centers I did from having heard of their reputation, having worked at one of the centers, and from what their web sites had to offer. Please realize that many hospital sites do not advertise every condition they treat, as their patients are referred by their primary care physicians. I do hope this helps you locate a treatment facility for your son! I will post any information I receive via my numerous e-mail requests for information. If any part of my answer is unclear, or if any of the links do not work, please request an Answer Clarification, before rating. This will allow me to assist you further. Wishing you and your son all the best, crabcakes Search Terms t-cell lymphoma research mycosis fungoides research ctcl specialists cutaneous t-cell lymphomas hospitals specializing lymphomas US hospitals specializing lymphomas UK hospitals specializing lymphomas Canada hospitals specializing lymphomas India hospitals specializing lymphomas Dubai
Clarification of Answer by crabcakes-ga on 08 Mar 2004 22:23 PST Hello akshayshah, I just was notified by the Mayo Clinic in South Africa. Sadly, they do not treat mycosis fungoides. I'll let you know as I get any other responses. Regards, crabcakes
Clarification of Answer by crabcakes-ga on 09 Mar 2004 09:18 PST Hello again! I have just received an e-mail from a hospital in South Africa that does not treat CTCL, but says: "You can contact Dr Gulzar Malik, Radiation Oncologist, on +27 11 484 5260 for an appointment. He has rooms at Brenthurst Clinic in Parktown, Johannesburg" I can't seem to find a website for this clinic, but I found some lodging nearby the area. http://www.safarinow.com/Destinations/Linden/ I'll keep you informed! Regards, crabcakes
Clarification of Answer by crabcakes-ga on 10 Mar 2004 21:20 PST Hello again akshayshah, A very kind woman in South Africa, a CTCL patient herself, has sent me the names of two more hospitals in South Africa that treats mycosis fungoides: It still was difficult to locate a good source of information on Tygerberg Hospital but what I gave you can at least give you a start! She referred me to another woman for more info, whcih I will post upon receipt. Groot Schuur Hospital Postal address : Groote Schuur Hospital, Private Bag, Observatory, 7935, Cape Town, South Africa Physical address : Groote Schuur Hospital, Main Road, Observatory, 7925, Cape Town, S Dean of the Faculty of Health Sciences Tel. 406-6101, Fax : 447-8955 e-mail: npadayac@curie.uct.ac.za Public Relations Unit Tel. 404-2187, Fax : 404-3254 e-mail: lpollio@pawc.wcape.gov.za Teaching Hospitals Board Tel./Fax : 404-2002 http://www.gsh.co.za/ab/ Tygerberg Hospital Tygerberg Hospital Tygerberg Cape Town 7505 South Africa +27 21 938 5992 +27 21 931 0804 This was the most informative site I could find for Tygerberg Hospital : http://www.sun.ac.za/healthsciences/schools/medicine/rad_onc/dept/topframe. Regards, crabcakes
Request for Answer Clarification by akshayshah-ga on 12 Mar 2004 11:08 PST Hello Crabcakes Thanks for the search results so far. I hope you can find suitable locations in India & Dubai. There is no language problem - me & my family all speak fluent english. Something that might help in the search is that my son has hypopigmented version of mycosis fungoides. I have found the results so far quite helpful. Once you complete the search let me know so I can rate it. Thank you Akshay
Clarification of Answer by crabcakes-ga on 12 Mar 2004 11:14 PST Hi akshayshah, I'm glad you are pleased with the results so far. I really am at a brick wall when it comes to Dubai and India. I'll keep trying, but NONE of the people I have e-mailed have answered. That is, those with valid e-mails. I have written one other contact, recommended by the woman who recommended, as a CTCL patient herself, who recommended two hospitals in South Africa. I wrote to her two days ago, but have not heard back. Could you let me know your native language? I plan to continue my search, but I really don't have great expectaions in regards to finding more sources from India and Dubai. Regards, crabcakes
Clarification of Answer by crabcakes-ga on 12 Mar 2004 20:48 PST Hi again akshayshah, Your son has a very rare form of mycosis fungoides. According to the following abstract, only 5 cases have been documented. Pathologically, the disease is the same, but seen in patients under 20, and most often people of African descent. One theory is that the malignant cells that cause CTCL in the first place, causes a decrease in numbers, and abnormal formation of menalocytes (the cells that produce skin pigment), causing flaking, itching and areas of hypopigmentation. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=94219860 http://www.med.wayne.edu/dermatology/MichDerm%20Online%202002/9HYPOPIGMENTED%20MF.htm I?ve found a few additional hospitals, but only one additional for Dubai. I have to say again, that finding information in Dubai and India is very difficult. This is the only Indian hospital I had originally found. I?ve included it here so all the Indian Hospitals will be together: Kidwai Memorial Institute of Oncology Dr. M.H Marigowda Road, Bangalore - 560029,Karnataka , India . Telephone : 091-080-6560708(14 lines) Fax:091-080-6560723 kidwai@kar.nic.in http://www.kar.nic.in/kidwai/ Additional Cancer Centers: Tata Cancer Center Mumbai, India Tel: + 414-6750 Fax: + 414-6937 http://www.tatamemorialcentre.com Patient Information http://www.tatamemorialcentre.com/patient.htm About Tata Cancer Center http://www.tatamemorialcentre.com/about.htm http://www.tribuneindia.com/2000/20000827/cth1.htm#4 These hospitals have cancer treatment centers, but do not state CTCL specifically: Rotary Cancer Centre 117/K/11, Gutaiya, G.T.Road 208002 Kanpur E-mail avadheshdixit@rediffmail.com Telephone ++91 (for India) - 512 - 543 887 Fax ++91 (for India) - 512 - 543 887 Dharamshila Cancer Hospital Research Center Vasundhara Enclave New Delhi 110096 India E-mail: Click Here Tel : +91 11 261 7771 Fax : +91 11 261 7773 Chittaranjan National Cancer Institute 37 S.P. Mukherji Road 700026 Calcutta India Tel : +91 33 475 9313 Fax : +91 33 475 7606 Kidwai Memorial Institute of Oncology Dr M. H. Marigowda Road Karnataka Bangalore 560029 India Tel : +91 80 664 0245 Fax : +91 80 664 48 01 The following site I had found earlier, but was hesitant to list: The site has broken links, an invalid e-mail address and numerous pop-up ads! Perhaps you can reach them by phone. Cancer Center (WIA) Chennai Adyar Chennai / Madras - 600 020, INDIA Ph: +91-44-4910754 - 4911526 Fax: +91-44- 4912085 Email: wia@tissd.com http://www.tissd.com/wia.htm http://members.tripod.com/hp/wia.htm You can see a picture of the center here: http://www.inctr.org/publications/2000_v01_n01_a07.shtml http://www.webhealthcentre.com/consult/inst/cancer.asp Dubai Hospitals: Again, I?m including the hospitals that were listed in the original answer, to keep all the Dubai hospitals together: NMC Hospital lists a dermatology department. I have e-mailed them. P.O. Box - 7832 Dubai, U.A.E. Tel : +971-4-689800 Fax: +971-4-682353 nmchospt@emirates.net.ae http://www.nmc.co.ae/index.html http://www.nmc.co.ae/Hospital/Dermatology/dermatology.html This is the contact page for NMC http://www.nmc.co.ae/Contact_Us/contact_us.html New Dubai Medical Center +9714-2714444 No site for this hospital found. The site below refers to the architecture! http://archnet.org/library/sites/one-site.tcl?site_id=1313 Al Salama Hospital - it appears that this hospital may treat CTCL, but it is not stated on its site. Many links on this site are broken. (The HOME button is also broken, along with the Arabic language link) I requested more information through their contact page. http://www.alsalamahospital.com/clinics1.htm#Dermatology This is an archived site, with a little more information, also containing broken links. http://www.alsalamahospital.com/archive.html American Hospital, Dubai. This hospital does not include oncology nor dermatology among its specialties. American Hospital P.O.Box: 5566, Dubai, UAE Tel: 00971 4 33 67 777 Fax: 00971 4 33 65 176 http://www.ahdubai.com/ Al Noor Hospital does not list oncology or dermatology as specialties. http://www.alnoorhospital.com/ A list of Dubai Hospitals. Most of these have no web sites, or are broken links. http://www.godubai.com/citylife/hospitals.asp?user_id=&s_id= Another list of Dubai hospitals. http://www.adcci.gov.ae/pls/uaecontacts/contact_uae_list.act_result?category=19 Additional Dubai Center: Dubai Hospital P.O.Box 7272 Dubai United Arab Emirates This is all that is stated on this site about what services it offers is this ?Department of Health and Medical services provides a lot of important medial services a matter that give the opportunity to all people to live a safe and healthy life in a safe and healthy community.? http://www.dohms.gov.ae/ Please ask for another Answer Clarification if further information is needed! I'm hoping your son's treatment goes smoothly! Regards, crabcakes
Clarification of Answer by crabcakes-ga on 24 Mar 2004 09:43 PST Hello akshayshah, I have recieved an e-mail from a woman who works with CTCL on a worldwide basis, sort of an information clearinghouse. She told me that there are no actual mycosis fungoides specialists, per se, but groups of doctors who rely on help and support from other specialists, and who may stay in contact with the scientists who research this disorder. She sugests you come to the US, to one of the several centers I have listed already, as these centers have multi-disciplinary groups of physicians such as hematology/oncology specialists and dermatologists. These different specialists work together, combining their own areas of expertise to arrive at the best treatment for a patient. I hope this helps you out a bit more. Unless you have any other questions regarding this question, I shall consider this question closed, as I have no additional information to add. Again, I wish you and your son all the best! Regards, crabcakes
Request for Answer Clarification by akshayshah-ga on 23 Apr 2004 15:30 PDT Hello Crabcakes Thanks for all the help so far. I have been trying to contact all the institutions based in UK & USA to find out how many cases each institution has treated of juvenile mycosis fungoides. I plan to visit USA second week of June with my son and the idea is to visit the institute which has treated the maximum number of cases of juvenile mycosis fungoides - hence indicating maximum experience in the treatment. Based on what you have provided I have decided not to pursue treatment in India, Dubai & South Africa. I am not getting prompt replies from the USA & UK institutions however. Would it be possible for you to get this info ? I am willing to pay another $200 foir the service. Thanks Akshay
Clarification of Answer by crabcakes-ga on 24 Apr 2004 12:44 PDT Hi akshayshah, It is good to hear from you again. I had come to the same conclusion as you have about what countries seemed the best for your son's treatment-at least based on the available information. You would like to have information on the number of patients treated at each hospital in the US and the UK.(That's good information to know!) I would be glad to try and get the answers for you. The best way to do this is to post a new question, adding "For crabcakes" in the subject line. If I am unable to find the information, another researcher can work on it. If no one can get the information, you will be charged nothing, other than the $0.50 posting charge. Regards, crabcakes

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