Eryl - Treat, Watch, Wait & Walk!

Published: 08-Nov-2013

At 62, 10 years watch and wait followed by R-CHOP, R-Fludarabine and DHAP - now watch, wait and mountain walk!

I am a retired doctor (GP and then Old Age Psychiatry), married with two sons and two grandchildren. Before treatment I had ambitions to do more long distance walking and travelling once we had retired but I started treatment only a few weeks after my retirement in 2009. Fortunately I have always been a keen birdwatcher and during the annus horribilis of treatment this and my family sustained me (as well as boxed sets of 'The Wire' and macabrely 'Six Feet Under'!). Even from my hospital bed I was able to see a peregrine falcon and a small flock of pied wagtails living on the warm flat roof of the hospital building opposite mine.

Diagnosed: at the age of 48 in 1999 by chance following blood tests for an acute episode of hip pain brought on by mountain walking through deep snow the previous week. My ESR ( a measure of 'inflammation' in the body) was found to be raised and a subsequent blood test showed a raised IgM paraprotein at 24 g/l. The diagnosis was confirmed following a bone marrow biopsy and I was referred to the Royal Shrewsbury Hospital where I have had all further treatments and most investigations. After discussion and deciding against plasmapheresis and Fludarabine, I opted for 'watch and wait' and remained really very well for the next 10 years.

2009 first symptoms and Treatment: These included fatigue, abnormal bruising following minor injuries and mild peripheral neuropathy mainly affecting my hands but which had previously been investigated and was thought to be due to arthritis in my neck. My IgM was now over 30 and my haemoglobin had fallen to 11g/dl.  Chlorambucil x 3 produced no response.

R-CHOP x 3: from February to the end of March 2010 produced no response and about 5 weeks after the last treatment my  IgM was 57.9 g/dl but haemoglobin was 'well maintained' at 11.1g /dl. (in Birmingham where I had been referred for possible Autologous bone marrow transplant).

A Second Opinion: with Professor Lister at Barts and the London in April 2010 lead to: R-Fludarabine x 2 and  Cladribine x 2 .  October 2010 showed that my haemoglobin had risen to 13g/dl and my IgM fallen to 24.  This was considered a poor response however and my increasing tiredness and peripheral neuropathy was attributed to my W.M. rather than treatment side effects.

DHAP: (dexamethasone, cytarabine and cisplatin) was given as an in-patient in Shrewsbury an experience which I am not keen to repeat and was followed by another admission with fever for which I was given intravenous antibiotics.  Needless to say by this time I was feeling less than perky and rather dispirited. The aim of the DHAP was to prepare me for an auto transplant but by November 2010 my IgM had only fallen to 21 and my haemoglobin was down to 9.8 g/dl. Bloods were taken for tissue matching in Birmingham and mutterings of a donor stem cell transplant were made. The prospect looked grim. However over the next year or more my IgM has continued to fall and my haemoglobin to rise and by October 2011 they were 15 and 12.8 respectively.

Late January 2012. I am currently feeling really very well although with some fatigue and unfortunately increasing peripheral neuropathy affecting my hands and feet and associated with muscle pains and generalized aches. However I am able to keep going all day most days and walk up to 8 miles occasionally and shorter distances several times a week and am generally enjoying life once more. My next review is at the beginning of March in Shrewsbury (I have been seen several times over the past year with the outcome of more 'watch and wait').
So I am not sure what happens next. More 'watch and wait' I hope and then perhaps more effective treatments may become available?