Dorothy's Tale -

Published: 19-Jan-2014

WM with Central Nervous System Involvement

Dorothy's Story : Marvellous Treatment at UCLH For WM+ Central Nervous System Lymphoma

Diagnosis. I was 58 when I was diagnosed with WM in April 2011. I retired in September2010 and moved permanently to Dorset. I signed on with a new GP in March 2011. When discussing my medical history he expressed concern about my tiredness and repeated chest and sinus infections over recent years. He arranged a blood test to "check out my immune system". I was referred urgently within a week to a haematologist in Dorchester and WM diagnosis was confirmed following lymph and bone marrow biopsies. My IgM was 20. Hb 9. I had enlarged lymph nodes in my armpits and groin and extensive masses in my abdomen.

Initial Treatment. I commenced CVP (Cyclophosphomide, Vincristine, Prednisolone) in May 2011. I showed signs of neuropathy after only one cycle. I experienced weakness in my legs after being treated in hospital for pneumonia. I was given a half dose of Vincristine for the 3rd cycle and no Vincristine for for cycles 4 and 5. The neuropathy worsened despite the withdrawal of Vincristine. My legs, feet, hands and balance were affected. My right foot "dropped" and I could not walk without a stick. Brain disease was suspected and I was admitted to hospital for tests.
The results of a lumbar puncture, brain scan and nerve conduction studies indicated an inflammatory demyelinating polyneuropathy with the possibility of disease infiltration. The CVP had not reduced my lymph masses at all.
Referral to UCLH. I was referred to Dr Shirley D'Sa at the UCLH Waldenstrom's  Clinic in September 2011 for specialist advice. She referred me to Professor Reilly at the National Hospital for Neurology & Neurosurgery. I was admitted there in October 2011 for almost 3 weeks for extensive tests. The MRI and CSF cytology confirmed a diagnosis of CNS lymphoma.

Second Treatment. I was immediately referred to the Leukaemia & Lymphoma Unit at UCLH for high dose chemotherapy. R-IdaRAM chemotherapy commenced on 28/10/11. (Ritaximab, Idarubicin, Cytarabine, Dexamethasone and Methotrexate by IV and intrathecal (directly into CNS). I had 4 cycles between October 2011 and March 2012. Each cycle involved approximately 3 weeks as an inpatient at UCH although I spent 1 week in ambulatory care during cycle 4. The most significant complication was bradycardia due to my reaction to Methatrexate, which was omitted in cycle 4. Otherwise, I tolerated the chemotherapy
reasonably well. The standard of care at UCHL was excellent.

I had a PICC line inserted for the chemotherapy. This became infected in May 2012 and I was admitted as an emergency to hospital in Southampton with e-coli.

Results. PET/CT scan in May 2012 showed no sign of disease. MRI scan showed no abnormalities apart from enhancement of the meninges. There was a dramatic improvement in my neuropathy, a 95% recovery. Igm at May 2012 was 0.5. An unexpected improvement was restored hearing. I previously needed a hearing aid. It is possible that my previous loss of hearing was due to some involvement with lymphoma of my auditory nerves. I am now on "watch and wait" and feeling remarkably well.