jrb14141's Journey with Lymphoma of the Skin

Patient: Lymphoma of the Skin

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 10 years ago, Female, Age: 75

  1. 1
    • jrb14141
    • Experience with Lymphoma of the Skin
    almost 5 years ago
    jrb14141's Avatar

    Diagnosed

    Oh No

    Had itching for 3.5 years.Seen by many doctors. Went to Best Docs at NYU etc. No rash so tried many treatments over those years Finally skin changes and biopsy was done.

    0 Comments
  2. 2
    • jrb14141
    • Experience with Lymphoma of the Skin
    almost 5 years ago
    jrb14141's Avatar

    skin biopsy

    Procedure or Surgery

    Was finally diagnosed with Cutaneous T Cell Lymphoma or Mycosis Fungoidis.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  3. 3
    • jrb14141
    • Experience with Lymphoma of the Skin
    almost 5 years ago
    jrb14141's Avatar

    External radiation

    Radiation

    At the Cancer center we agreed to try the radiation as a first line treatment altho it usually isn't because of my skin changes which by now were becoming quite evident and the increasing awful itching. Well, my skin cleared beautifully but the itch remains.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • jrb14141
    • Experience with Lymphoma of the Skin
    almost 5 years ago
    jrb14141's Avatar

    targretin capsules $2000 monthly

    Drug or Chemo Therapy

    Spent a fortune and no relief obtained.Finally changed doctors and was put on a monoclonal antibody. Minimal side effects except the usual depressed immune system. Gained 10 needed lbs and felt so much better. Still itching. Became very rashy after 6 months so changed to a new drug which I just started.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    • jrb14141
    • Experience with Lymphoma of the Skin
    almost 5 years ago
    jrb14141's Avatar

    Clinical Trial

    I have been accepted into a clinical trial at the National institute of Health in Bethesda Maryland as medicare would not pay. This will be for a stem cell transplant. Last week I got the news that there is a donor avaiable so in May I'm risking all to stop this disease.

    0 Comments