[nellellen8052]

Another tale of cancer

by nellellen8052 on Tue Mar 21, 2017 5:34 pm

Greetings to all who belong to this forum.

Let me start from what I think is the beginning of my journey to today. During my entire life I have been plagued with ear and sinus infections. Twenty-one years ago, at the age of 44, I was diagnosed with Sjogren's syndrome and autoimmune hepatitis. My father also had Sjogren's, so it was nice to talk with someone experiencing similar maladies as myself. While the Sjogren's didn't have a treatment per se, it was a systemic disease that manifested with dry eyes and mouth and fatigue. The autoimmune hepatitis was treated with prednisone and Imuran (azathioprine).

Eleven years after the autoimmune diagnoses I noticed a lump on my cheek and after biopsies and a PET scan learned that I had marginal zone nodal lymphoma, Stage II; MZNL is an indolent cancer, slow growing but not curable. I was treated with chemo four courses of cyclophosphamide, vincristine, and prednisone (CVP) and Rituxan (rituximab), followed by seven years of maintenance Rituxan (every two months for two years and then every three months).

Three years ago I began the year very ill with gastro issues and pneumonia. The gastro issues were eventually diagnosed as microscopic colitis, in my case another autoimmune disease. The MC is now under control using a very expensive steroidal anti-inflammatory that only addresses the small intestine. The pneumonia has come back twice each year, each year except this winter (I knocked on wood).

Due to my recurring infections, my onc did bloodwork indicating that I had both hypo­gamma­globulinaemia and monoclonal gammopathy. Both immunoglobulins A and M are low. M is 14. Rituxan was discontinued. (Seven percent of those on long-term Rituxan maintenance develop monoclonal gammopathy). The immunologist I saw recommended IVIG every three weeks. My oncologist disagreed because my MZNL is related to my autoimmune issues. So, caught in a catch-22, I opted to stay away from crowded areas and wash my hands a great deal. So, I have spent a great deal of time at home this winter.

A year ago when I saw the immunologist my M spike was 0.7 g/dL (7 g/l). On my last visit with my onc. it had risen to 1.0 g/dL. Additionally, my peripheral neuropathy had gotten worse. My onc said I have a 50/50 chance of having a bone marrow biopsy in the next year.

This pretty much brings me up to date, although I suspect I've missed something along the way. I'm thankful for this forum and hope I can share what I've learned as well as learn what you all have to share.