Living with Non-Hodgkin's Disease

On April 23rd I had surgery to remove an enlarged lymph node from my neck. A week later I went in for the results of the pathology and was told I had lymphoma. I knew that was cancer, but that was all I knew about it. I went home and got on the internet, just to find out how many different kinds of NHL there are.

A week later I was told it was Indolent Follicular NHL, Grade 2 and that I was Stage III. The hematology oncologist also told me there is no cure for this type of lymphoma. After having to wait two more weeks, I saw a radiation oncologist He was going to start me on standard chemotherapy (R-CVP), but knowing there
was no cure I wanted to try a clinical trial and possibly find a better treatment that would put me into remission longer.

He said he would refer me to a lymphoma specialist at the James Cancer Center.
Another two weeks would pass before I could get in to see Dr. Flynn, who has the best “bedside” manner of any doctor I’ve ever seen. His attitude only reinforced my belief that I would get through this. He told me about a clinical trial for which they had just begun recruiting the week prior, and after taking the paperwork home to review and discuss with my family, I opted to join the trial (Epratuzumab and Rituximab in Treating Patients with Previously Untreated Follicular Non-Hodgkin Lymphoma).

After a CT and PET scan, and a bone marrow biopsy, I began the rapid induction phase of the treatments. After 4 weeks of intraveneous monoclonal antibody therapy, my next PET scan showed a drastic reduction in SUV - my numbers went from 5’s, 8’s and 10’s to all below 2. I think my highest was a 1.7 or 1.8.

Tomorrow I have another CT scan with restaging. A month ago, when I met with my doctor after my first round of treatment, he said it appears that I have had a complete response to the treatment. I know I don’t feel or see any more tumors. I didn’t get sick, other than some chills and nausea from the Rituximab. I’ll have the infusions once every 8 weeks until March, which will hopefully put me into long term remission.

I’m still praying for a cure, but I feel very good about what has transpired so far, and immensely grateful to all the doctors and nurses at the James, as well as the researchers who never give up trying to find a cure.