Gill -

Published: 17-Dec-2013

Watch and wait changed via Richter's Transformation to Diffuse Large B cell Lymphoma treated by R-CHOP. 2012 transformed into Bing-Neel Syndrome (WM of central nervous system) treated successfully as inpatient + ambulatory care in UCLH hotel.

One year on, I feel better than for five years. It has been quite a journey.

Diagnosis:  Autumn 2009. For two years before this my blood had tested strangely. Symptoms included severe pain when walking, poor circulation, angina requiring a Stent in an artery, a bout of double vision, a troubled digestive system and anaemia. Scores of tests followed. Heart doctors, gastric and vascular specialists, opthalmologists; I saw them all. The WM diagnosis curiously was a relief. At last there was some kind of explanation for all that had gone wrong. In 2010 things got worse. On holiday in France I developed an acute kidney infection and was in hospital for a week.

Back home my IGM was steadily moving upwards and I was referred to UCLH. A course of Rituximab was planned, but before that could start I contracted shingles which meant another stay in the local hospital. I had acute stomach pains as well as the shingles pain and my digestive system stopped working. I was allowed home on Christmas Eve but all festivities were cancelled. Christmas dinner was three Brussels sprouts.

R-Chop Inpatient Treatment: 2011 started even worse. In mid January feeling very unwell I was called back to UCLH for more blood tests. I was admitted to the Leukaemia and Lymphoma Unit. I was in T.16 for four weeks. A scan showed that the WM had transformed into full blown aggressive cancer. There were tumours in my neck, lungs, kidneys and throughout the lymph system. The doctors said they could almost see the tumours growing. Despite neutrophils of near-zero, the team went ahead with R-Chop chemotherapy. I won’t dwell on the dreadful mouth infection, exhaustion, weight loss and the rest. All seemed so bleak that UCLH put us in touch with Marie Curie Cancer Care and their wonderful support centre in Hampstead. I had five more rounds of R-chop and two further Rituximab top ups as an outpatient.

Incredibly, the next Petscan showed the tumours were gone. The doctors said I had experienced a complete metabolic response.

At the last count my IGM was down from its peak of nearly 40 (4000) to just 2. I can now walk almost normally.  My digestion and general health seem normal.  My energy levels are good and I feel strong.   2011. Bad and good. Now 2012! 
I am 69. My working life was as a teacher and deputy head of a large comprehensive school in Newcastle and have lived for the past sixteen years with my husband Philip Aris in Crouch End, North London.

I have two grown up children and two stepdaughters and a stepson. We are all very close.  Between them they have provided us with eight grandchildren aged from nearly 21 down to less than 12 months.

My passions are making ceramics which was my early training, gardening and travel. 

I have had wonderful support from Philip, my family and close friends. Relationships have deepened and strengthened as the result of the whole experience.

Update to be added.
If there is one thing WM has taught me it is to enjoy every second of every day to the max -  And I do!