Shock diagnosis

After my biannual endoscopy due to Barrett's oesophagus I was diagnosed with Non Hodgkin's Follicular Lymphoma Low Grade in May. The hospital I cannot fault except for 7 weeks from suspicions to actual diagnosis. It affected me and my wife very badly. My cancer is normally watch and wait but unfortunately it has gone to the edge of my kidneys so I have already had 2 courses of chemotherapy. 6 prescribed in total. My cancer is fairly rare does anyone else have experience of it? Not too well after last week's treatment. No energy,loss of appetite and fed up! Our lives have been turned upside down.

  • Hello Colby, so sorry to have to welcome you to Cancer Chat. I was diagnosed with Non Hodgkin's Follicular Lymphoma Christmas 2006, nice Christmas present, not. I had 6 cycles of RCVP, no R maintenance back then. I relapsed in 2012 and had 6 cycles of RCHOP+ 2years R maintenance and last year I had radio therapy for a large mass in my armpit. On watch and wait again now.

    Are you having chop or CVP? I found CHOP harder than CVP, but the lack of energy and appetite and generally feeling yuck are par for the course. One thing though FNHL does respond very well to treatment. My reponses have been very good each time. Over the years we have gradually found that lymphoma sort of just becomes part of life, but every now and then it wakes up and causes a few problems. Gradually life begins to turn itself back up the right way and you carry on from a new norm.

    Christine.