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CTCL/MF

MNotestine
MNotestine CSN Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I'm a 58 yr old minister with Cutaneous T-Cell Lymphoma (CTCL) Mycosis Fungoides (MF). This is my second occurence. The first was 13 Yrs ago. This time around July 2009. I have looked for support groups for this with no success. It would be nice to talk to others with like symptoms and set backs.
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  • JJPA
    JJPA CSN Member Posts: 1
    #2
    CTCL-MF
    One of the recognized sources for information on CTCL and treatment is the Cutaneous Lymphoma Foundation, which can be found at www.clfoundation.org . They maintain an active mailing list with many patients that participate and are responsive to inquiries and postings. The section of their website listed under "Support" provides instructions on how to join the mailing list (http://www.clfoundation.org/support/support.htm)

    I was recently diagnosed CTCL-MF 1a and attended their Summit in NYC this past weekend, which was set-up for the physician, patients and caregivers. There were a number of patients that attended, including the founder and president as well as some of their Board. It was a great opportunity to meet others with this rare and chronic desease and to share our stories.

    Hope this helps you to connect with other CTCL patients as well.
    Jeff
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  • akathy66
    akathy66 CSN Member Posts: 2
    #3
    ctcl/mf
    I too have this and have had it for 15+ years.
    How can I try and help you?

    I've had many treatments. I am now between treatments.
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  • akathy66
    akathy66 CSN Member Posts: 2
    #4
    CTCL-MF
    Hi,
    I also have CTCL-MF.. What are you doing for it and are you in treatment at this time?

    I've had it for approx. 15 years and have many different treatments for this.

    I just stopped taking Intron A interferon..I found it was recalled.

    I'm not taking anything at this time but plan to go back on something within a couple months.

    Feel free to email me
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  • rgw5457
    rgw5457 CSN Member Posts: 2
    #5
    CTCL(MF)
    HELLO MNOTESTINE,i have been living with ctcl(MF) since 2003 this is also my second occurence.I was in stage 4 by time the derm. realize it was ctcl(MF)at which she turned me over to a oncologist who after a ct, pet scan and a lymph node bio. HE GAVE ME SIX MONTHS OF CHEMO CALLED CHOP.I BEEN ON SSDI EVERY SINCE MY SECOND OCCURENCE WAS ABOUT MARCH OF 2009 MY ONCOLOGIST IS MONITOR ME WHILE MY DERM IS TREATING MY SKIN WITH A PILL CALLED TARGRETIN.
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