David Corrin
Posted by
David Corrin

David's myeloma story: from diagnosis to stem cell transplant

David Corrin
Posted by
David Corrin
05 May 2016

David was diagnosed with myeloma at the age of 66. He shares the story of his diagnosis, and how he benefitted from a clinical trial.

David pictured on a train

Initial diagnosis

A routine blood test for hypertension was being reviewed by my GP – no problems, or so I thought.

Then he looked up from his computer screen and said “you have an elevated protein level in your blood. I think that we should refer you to a consultant”

Six weeks later I saw the consultant at my local hospital in the Isle of Man who reviewed the results and said I had monoclonal gammopathy of undetermined significance (MGUS).

It meant nothing to me either!

The consultant gave me a leaflet on the subject and said “study that, and if you have any questions we can go through them next time”. I filed it all to the back of my mind, and told my wife there was nothing to worry about.

Fast forward to December 2014

Whilst lifting a suitcase up a narrow, twisting staircase in a hotel I felt a muscle twinge in my groin. My GP didn’t think anything was wrong, and suggested that some physio might be a good idea.

In fact, things felt like they were getting worse.

When I went for my usual blood tests, the consultant decided to send me for an x-ray and arranged for me to come back in six weeks. The pain was still bad and I resolved to see a GP earlier. After looking at my record she said “I think they’ve x-rayed the wrong area”.

24 hours and a new x-ray later, I was being urgently referred to the orthopaedic consultant. This was the defining moment… the red button was well and truly pressed. We had gone to Defcon 1.

My appointment with the haematology consultant

The appointment to see a consultant in Liverpool was days later. Little did I realise how often I would be flying over to Liverpool for the rest of the year, and how every time I met a medical professional they would want to jab a needle into me!

They confirmed that I had myeloma and I was swiftly invited to join the myeloma 11 clinical trial. With everything cleared I checked into the Royal Liverpool Hospital to start my treatment.

David pictured in hospital

Treatment

The treatment went well. The myeloma research sister, who was providing hands on support and was and is my prime point of contact, said they were fantastic. She was absolutely amazing during the whole process.

The next stage of the treatment was the option of a stem cell transplant using my own stem cells.

It was all scary stuff and quite daunting. I could put the process off until the Myeloma reappeared in perhaps two to three years’ time or go for the stem cell procedure and substantially increase the remission period – but absolutely no guarantees.

Side effects

When they sit down with you and run through the risks and side effects from the stem cell transplant process it takes a while to really understand that it isn’t a menu of complications from which to choose. You may experience some or all of the effects but you won’t escape entirely.

For several days I wandered on in blissful ignorance. No loss of appetite, no loss of taste, no sickness – I almost convinced myself that they had injected me with water rather than the high dose Mephalan.

But the lovely team looking after me knew better and that I would feel less cocky and more unwell quite quickly.

The Mephalan only remains in your body for 12 hours but in that time it’s like a tornado sweeping through a timber village, it pretty well uproots every loose bit of timber, but some take a few days to topple over.

Well, that’s what happens in your body as the Mephalan targets every quick growing cell and knocks them down, but it takes a few days for them to fall over completely.

But they do fall over and when that happens the effects become quite apparent.

This may seem to imply that I felt awful and took to my bed but that wasn’t the case.

Generally, I felt OK, probably more familiar with the toilet than usual, but otherwise better than I expected to feel. The regular contact from the nursing team was very reassuring and the care, compassion and good humour provided an environment that was as comfortable and encouraging as possible.

David with shaved hair

By now my hair had disappeared, some of it from unexpected places, but essentially I was a skin head but strangely some ladies thought the overall effect suited me!

Now here we are pretty well 3 weeks to the day of my admission and I have permission to return home.

There is still quite a long period of recuperation once home (think in terms of months) before I will be fully recovered and in the short term I will be very vulnerable to external infections but gradually things will improve.

Research gives me hope 

As it stands at the moment Myeloma is incurable but given the depth and speed of research being undertaken hopefully that is not a situation which will endure. Tremendous strides  have been made in recent years in treating this condition and more changes are round the corner which should have a significant effect on existing sufferers and those still to be discovered.

Comments

30.07.2018

Hi David, thanks so much for writing your story so eloquently and in such a readable way. You certainly have been on quite a journey and a love the photos. I like the skin head look myself. Take care of yourself.

23.08.2018

Hi David, I'm pleased I've read this, you have done a great job at summarising your Myeloma story and I am sure for anyone who either has or whose loved one has just been diagnosed will find this extremely informative and helpful. I am in remission from AML so this has given me an insight into Myeloma which I don't know as much about. Thank you for writing this I am sure it will help many, I will certainly share the link with anyone who is looking for help. Warm regards Anna

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