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Patients Against Lymphoma


Support > Patient-to-Patient > Patient Experiences & Guidance

Barbara's Story about Mycosis Fungoides

Seventeen years ago I had a life-altering birthday.  It was confirmed that I had Mycosis Fungoides, a t-cell NHL that is not life threatening (at least not the indolent kind that I have). 

I had been bothered by a dry spot on my stomach for some 10 years but various doctors thought it was eczema or allergies and had prescribed various creams and salves.  Finally, since I was on an HMO at the time, my doctor scheduled me an appointment with a dermatologist.  He took one look and said he thought he knew what it was but would like to do a biopsy to be sure.  

Since I was a doubting Thomas, I ask for a second opinion when the biopsy came back positive.  The other doctor knew what it was the minute he saw it.  ( He was quite a bit older and more experienced that the first doc.) 

For all these years I have had PUVA light treatments with oxsorlen pills taken one hour before PUVA.  The Oxsorlen made me sick but it was not as bad as having to take CHOP or other treatments.

I experienced quite a lot of discrimination in the workplace for sometime because no one had ever heard of this condition.  (neither had I!!)  The way my dermatologist worked, I had to leave work one half hour early in order to get my treatment before he closed his office for the day.  I went in to work Ĺ hour earlier each day that I had treatment, which started out going everyday for three weeks.  Then it was three times a week, then two, then one until I was clear.

This took almost 6 months the first time.  I have had several breakouts in the ensuing 17 years but now that I recognize it, I donít wait for it to get bad. 

This is not the worst thing that could happen to me and Iím thankful every day that it was diagnosed before it turned into tumors, which is what happens when not diagnosed and treated. 

~ Barbara

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