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Myeloma Diagnosis 12/96- ASCT, Interferon, Positive Thinking
From a rare type of Multiple Myeloma, to Cyclophosphamide, Vincristine, Adriamycin, Methylpredmisolome, an autologous stem cell transplant, interferon and finally to complete remission-
Hi David- Thank you for the prompt reply and am very happy to send to you ‘my MM story’ incorporating therapies from my autologous stem cell transplant to interferon to positive thinking.
Firstly I will answer the direct questions, as I mentioned in my initial contact I am now a close friend of my original consultant Stewart, we had a conversation last evening and he was able to provide some information I had forgotten.
What I must say is that for me a key part of my treatment, recovery and ongoing good health I put down to meeting Stewart, we ‘hit it of’ with common interests that led to my complete trust in him and that gave me great confidence, I will happily tell anybody that want to know that Stewart saved my life, a point he will argue that he was just doing his job. A second key element I think is that I just did not want to die, to not be with my loving wife, not see my children grow up plus I had/have an interesting fun eventful life that I continue live to the full and was/am determined not to give up.
Perhaps that is commonly called positive thinking!
Anyway, I digress:
Initial diagnosis was a localised (single) plasmacytoma on the right shoulder. 3rd December 1996
Some bone pain in the local area, regularly tired.
Initial treatment: radiotherapy February 1997
IgD myeloma diagnosed October 1997
By then more bone ache and more fatigue.
Treatment; 6 courses of C-Vamp chemotherapy completed March 1998
Cyclophosphamide, Vincristine, Adriamycin, Methylpredmisolome.
Additional drugs; Motilium, Nizadtine, Diflucan, Allopurinol
In April/May 1998 I underwent High-dose Melphalan stem cell transplant at Royal Marsden Hospital
Commenced Interferon maintenance. Interferon stopped July 2009
During this time I also undertook a Peg-Intron trial.
Was considered in remission late 1999
Currently regular 3/4 month check ups at Royal Marsden Hospital, London.
Continue to take 2 x 800mg Sodium Clodronate
I lead a fairly active life, I do not exercise as much as I should, eat normally, I was not advise to change anything in my diet.
I am a graphic designer but that has morphed into working in motor sport (Co-incidentally I also had a small printing company). From 2006 to 2010 I worked in motor racing event management travelling the world organising etc, that kept me fit and focussed. Since then I have started a motor sport race clothing company that I have recently passed on to one of my sons to run. I have recently purchase a house in France which I intend – Covid permitting – to spend a lot of time there.
MY STORY:
I am sorry it is rather long-winded and lacking in medical detail, it is edited from an essay I am putting together about my life:
I worked in London, running a small design & printing company , with clients in Motor Sport, Hospitality and Finance. Long hours – a one and half hour drive to the office each day from my rural home, get up at 5.00am to arrive at 7.00 am and leave around 8.00pm to be back home by 9.30/10.00pm.
The first indication that something was wrong was a small lump that appear on my right shoulder, it
grew to the size of a small egg, at that point following a GP consultation I had a biopsy and was told I had a plasmacytoma and it would be treated with chemicals and I would be seeing an Oncologist, in my ignorance I did not know what an Oncologist was let alone a plasmacytoma.
A short time after I met the oncologist Stewart we hit it of immediately
sharing common interests in motor racing, my poor wife rolled her eyes as if saying ‘oh no not another petrol head’, just as well he was as it turned out.
I undertook a course of radiotherapy on shoulder area and all seemed to be progressing well. One weekend Stewart and I took my go-kart to a race track, whilst driving I ‘broke’ 3 ribs, Stewart had me in hospital the following morning for a Scan which revealed the cancer had spread to my whole skeleton.
I then undertook a course of C-Vamp chemopherapy, around this time I was transferred to a Haematology Consultant, she was a rather abrupt woman, when I asked fora prognosis I was informed in a very offhand manor that their was no cure and I about had 2 years to live, maximum. Obviously this was quite a shock but also I was very angry with her flippant manor and at that point I resolved to prove her wrong.
Some time after the C-Vamp course was completed I had a call from Stewart telling me a bout a new treatment going on at The Royal Marsden Hospital ( This hospital is a major research facility and the centre for The Imperial Cancer Research Fund) this was the high-dose chemo/stem-cell transplant method that I had heard about taking place in Phoenix Arizona. I was offered a place and took it immediately.
As many reading this will know the stem cells are harvested from our blood and frozen until they are required a short while later. After the harvesting I was advised to go home, rest and prepare for the high-dose chemo. For me the best preparation was not to sit about but to do something so Stewart and I took 2 sports cars to Germany for a couple of days to drive around the famous Nurburgring race circuit. This allowed me to clear my mind, concentrate of something other than the daunting medical procedure awaiting me back in England also I had the man who saved my life with me for company, all in all it gave me great confidence.
Back in the UK I was admitted to the Royal Marsden the first question I asked was how long will I be here? The quickest recovery had been 2 weeks and 3 days but it could be much longer it all depended upon my blood counts, platelet levels etc. The high-dose was administered over 2/3 days I don’t exactly remember, I did not want visitors only a couple of very close friends and my poor wife who came to visit every day a journey of over 60 miles each way, occasionally she was accompanied by one of my sons.
A few days after the high-dose treatment my immune system was down to zero and ready to accept my harvested stem cells, during that period I inflated like a balloon with I assume water retention, that subsided and I lost weight, my hair, appetite and sense of taste. I watched my ‘numbers’ very carefully and at 2 weeks 2 days I was told I they were good but they would like to keep me in one more day just for observation slightly disappointed not to have made it in record time but happy to be going home.
Continued recovery at home, very tired, some aches but basically slept a lot of the time gradually recovering enough to start going back to work on a limited basis by the end of the year. Things were heading back to normality, I was being careful and only working 2 or 3 days a week, this increased throughout 1999 when I was working a normal 5 day week but much reduced hours, then things changed on the 10th May 2000, whilst out walking our dogs my wife suffered an aneurysm and died immediately. A shocking experience that made me re-assess everything, now having to bring up my 3 children alone and also look after my mother-in-law who was suffering with early stages of dementia.
Fortunately I have a wide circle of friends who rallied round and helped, I stopped work entirely, the MM was and still is under control. By 2006 things had settled down, my children now in their late teens and early 20’s were finding independence and my mother-in-law was in care.
I was then working on a few small projects just to keep me occupied until I was offered an event management position in a racing series travelling the world, I found no problems doing this and loved the work, I slept well, was in good physical condition, administered the Interferon by injection 3 times a week without major side effects.
This position continued until the race series collapsed in 2010. By then one of the side projects I had been working on before had grown into a full-on business run by my daughter, she then had children and I took over the business now handing it onto one of my sons whilst I ease back.
I sincerely hope I have not bored you and if you require any more detail please ask and I will try to respond. Over the years I have been introduced to newly diagnosed MM sufferers and through my experiences I believe I have helped them come to terms with their condition and that it is not the end.
Kind regards
Tony Murray