• jrb14141's Avatar

    jrb14141 started following

    User: CancerNews

  • jrb14141's Avatar

    jrb14141 posted an update

    I haven't heard back from anyone with Cutaneous T Cell Lymphoma so I assume as it is rare there is no one on the site with this disease. I am headed for a stem cell transplant in 2 weeks and would love to hear from anyone who has experienced this treatment. Thanks for sharing. Joan

    1 Comment
    • DaveWaz's Avatar
      DaveWaz

      Hi - If you click on "find peers" on your home page (look in the right column) that will take to to a list of the people on WhatNext who closely most share your diagnosis. If there is no one with Cutaneous T Cell, then you can be the first to share your experience for others newly diagnosed. That is a unique gift. But we can help you connect with someone who can give you the gift of experience. Imerman Angels http://www.imermanangels.org is an awesome group that provides 1-on-1 matching for cancer fighters with those who have gone through it.

      Please let us know how this goes, we are happy to reach out on your behalf and find others who can give you perspective.

      over 4 years ago
  • jrb14141's Avatar

    jrb14141 wrote on CindyDeeds's wall

    Hi Cindy,
    I too have CTCL. It took the best doctors in NY 3 1/2 years to diagnose me. I have had many treatment in the past 2 years and am still suffering from terible itching and flaking. All my other symptoms have been allayed with chemo.We have a great support group just for this disease if you are interested.Send me a note if you like. Joan Bronman

  • jrb14141's Avatar

    jrb14141 started following

    User: CindyDeeds

  • jrb14141's Avatar

    jrb14141 wrote on Strongfighter's wall

    I haven't been following this group for awhile and was so sad to read about your brother. It must be terribly difficult and you and your family have my deepest sympathy. Would you mind telling me what is meant by lymphoma of the skin? I'm a patient and also on a listserve with others whose diagnosis is Cutaneoust T Cell Lymphoma. I'm wondering if this is the same. It sounds different in presentation so if there is any other diagnostic term we would like to know. Again wishes for peace and joy to rturn to your lives soon.

    Joan

  • jrb14141's Avatar

    jrb14141 wrote on Audrey's wall

    Hi Audry,

    Do you have cutaneous TCell Lymphoma?

    1 Comment
    • Audrey's Avatar
      Audrey

      It seems to be in remission right now. They said be surprised if it doesn't return. Of course, I have had it twice already. How long has it been since you had it? Tell me your journey thru this. What are your effects of radiation so I will know what to look for. Thanks

      over 4 years ago