For Crabcakes:
From all the medical institutions that have come up in your search
based in USA, Canada & UK, I would like to know how many cases of
"Juvenile Mycosis Fungoides - Patch Stage" each institute has treated,
the average age of the juvenile patients treated, and when majority of
the cases were treated. My son is 6yrs old and has been diagnosed with
this condition, and the purpose of this search is to shortlist which
medical institution to take him to for treatment based on the track
record of experience each institute has had.
We would prefer an English speaking medical institution.

---

Request for Question Clarification by crabcakes-ga on 27 Apr 2004 22:22 PDT

Hello akshayshah,
Thank you for your question!

I have begun gathering information. Because this will involve a lot of
phone calls and e-mails, I hope you can be patient with me. I will
gather the information, and post it as soon as I am done. It may take
several days.

Sincerely,
crabcakes

---

Request for Question Clarification by crabcakes-ga on 29 Apr 2004 17:54 PDT

Hi akshayshah,

 I wanted to let you know I am still working on your answer. I have
contacted almost all of the hospitals and doctors on the list, by fax,
phone and e-mail. I have received not one reply as of today. Please be
patient and I will post any information I get, as soon as possible!

Thank you!
crabcakes

---

Request for Question Clarification by crabcakes-ga on 30 Apr 2004 19:38 PDT

Hello again,
I have not heard anything back yet! I have found this:

Memorial Sloan Kettering specialists treat more than 450 lymphoma
patients each year and see more than twice that number in
consultation.

2004 Memorial Sloan-Kettering Cancer Center
1275 York Avenue. New York, New York. 10021
(212) 639-2000
http://www.mskcc.org/mskcc/html/385.cfm

As soon as I hear back from the numerous places from whom I have
requested information, I will post it for you!

Sincerely,
crabcakes

---

Request for Question Clarification by crabcakes-ga on 04 May 2004 10:30 PDT

Hello again,akshayshah

 I am experiencing the same thing you did in trying to locate the
information you now want. From dozens of calls, faxes and e-mails to
hospitals, clinics and doctors, I have received not one response.

 I received this morning, one reply from a foundation, who kindly told
me I would need to hire a full-time researcher to gather this
information! They did tell me your best option is the US,  however.

Without additional information, if I needed to choose, I would select
one of these larger, and well known facilities, which were included in
your first question:


 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


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


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





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





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/




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

Should you choose to select one of the above facilities, you will of
course make contact, before you arrive. When you do so, perhaps the
contact person can tell you the number of cases they treat. I have
been unable to elicit any responses!

I would feel confident that any of the above hospitals will offer you
excellent and up to date treatment and I would not hesitate to take my
own child for treatment to either facility. Cases of mycosis fungoides
are unusual, and these hospitals have the specialists and knowledge to
treat such cases.

This question does not expire for 22 days. If you would like to open
this question to all researchers, you may cancel this question, and
repost. By leaving my name off, any researcher can work on it for you.
Perhaps someone else will have better luck than I !

Sincerely, crabcakes