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 14 years ago, Female, Age: 79
Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 14 years ago, Female, Age: 79
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jrb14141
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Experience with
Lymphoma of the Skin
almost 9 years agoDiagnosed
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.
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jrb14141
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Experience with
Lymphoma of the Skin
almost 9 years agoskin biopsy
Procedure or Surgery
Was finally diagnosed with Cutaneous T Cell Lymphoma or Mycosis Fungoidis.
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jrb14141
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Experience with
Lymphoma of the Skin
almost 9 years agoExternal 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.
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jrb14141
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Experience with
Lymphoma of the Skin
almost 9 years agotargretin 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.
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jrb14141
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Experience with
Lymphoma of the Skin
almost 9 years agoClinical 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.