Thanks Lynne, for providing this web site, it offers wonderful support for sufferers.  I have read all the stories and would now like to share my story.

      I am 41 years old and am happily married with three children.  During my childhood I suffered many colds, allergies and sinus infections.  I found it hard to wear contacts, my eyes were always dry and felt gritty.  My dentist had many visits from me and he could not work out why I needed so many fillings, especially when I wasn't a sweet tooth.

     At the age of 21, I started to develop swollen parotid glands and the doctor said I had the mumps.  At the age of 26, after the birth of my first child, I started becoming very fatigued, swallowing dry biscuits was becoming difficult, and I seemed to be drinking lots of water.  My eyes were becoming very dry and uncomfortable.  My parotid glands were swelling up and taking days to settle down.

     I finally went to the doctors and they took blood tests and within weeks I was diagnosed with Primary Sjogren's.  This was very difficult because no one really knew much about the disease.  Eventually I got hold of a 1972 medical journal and read about an associated risk of developing Lymphoma.  I panicked and became very stressed.  My rheumatologist agreed with the risk but assured me it was very unlikely and very rare.

     My symptoms are dry eyes, dry skin, rashes, hives and red spots on my legs especially at night time, fatigue and swelling of the parotid and lacrimal glands.  I have been taking Plaquenil and Colgout for 8 years and it has helped me.  Six years ago I had a biopsy of my lacrimal gland and the results were fine.  Three years ago I had a biopsy of my parotid gland and once again it was fine.  A year ago I had a biopsy of the same lacrimal gland because it became quite enlarged and beside the gland I had a dermoid cyst growing.  My specialist said this was very rare to have two diseases going on in one small area.  He assured me that I need not worry.  So, I booked our family holiday three weeks after the operation thinking that would give me enough time to recover.

    A week after the operation I was sitting in the doctors office with my daughter and husband.  The doctor spoke in a very quiet voice, the dermoid cyst was benign but the results from pathology show cancerous cells in the lacrimal gland.  That was the most dreadful feeling ever.  I was shocked and wanted to cry but had to hold on to all my emotions because I had my 12 year old daughter sitting in the room beside my husband.  I knew that now I will start to worry and these worries will be big worries.

     I went to see an oncologist and he sent me to have CT scans, blood test, PET and Gallium scans.  The PET and Gallium scans showed that I had multiple spots on my chest and on my stomach.  The oncologist was certain that the Lymphoma had spread according to the PET and Gallium scans.  The oncologist then organized me to have a biopsy to check if the Lymphoma had spread.  The surgeon was a bit confused as my CT scans showed no evidence of Lymphoma and said the PET scan and CT scan didn't match.  So, he performed the biopsy and the result was healthy tissue.  I have Maltoma Non-Hodgkin's Lymphoma; slow growing, which further tests showed it was turning aggressive.  Stage one needing three treatments of chemotherapy or stage three needing 6 treatments of chemotherapy.  Because of the PET scan, they can't be 100% sure it had not spread even though the results were negative.  So, I started having my chemotherapy and they thought since I was handling it okay, I should have a further three treatments.  I had the 6 chemotherapy treatments, my hair fell out and now it has grown back and since then I have had two CT scans and happy to say there is no sign of Lymphoma recurrence.

     I would like to hear from anyone that has had a similar experience.

     Take care and God Bless you all.

Anna

Story Copyright © 2004-2007 Anna