[Rusty1983]

Diagnosed with multiple myeloma at 28 and going strong

by Rusty1983 on Mon Jun 05, 2017 9:56 am

Hi All,

My name is Russell and I am 34 (yesterday actually). I was diagnosed in Sept 2011.

Prior to this I was extremely healthy and an avid gym goer. My training sessions started to get more difficult when I began to get injured easily and, eventually what I later found out, fracturing ribs while training. I went to my GP on many occasions, had x-rays, Also osteopath visits. But the pain was just getting worse to the point I collapsed one day in my flat and couldn't move. Still the GPs insisted I was just overdoing it at the gym (I hadn't been in months).

Luckily I have private healthcare and asked to be referred to a specialist. At this time I was struggling to raise my right arm, so a bone consultant was thought to be the best port of call. He could see the pain I was in and carried out a MRI scan that same day. The following day I received a call to come straight back and have a full body MRI. I was then referred to a hematology consultant who told me I had multiple myeloma and that it was probably not thought about because of my age.

I did 6 months of cyclophosphamide, thalidomide, and dexamethasone (CTD) with an autologous stem cell transplant in hospital for 1 month (which I heard was good). The following years every month I received Zometa infusions to help my bone pain.

I was sacked after falling ill and taking time off work, but I successfully sued the company in question. Although small amount of compensation was given, it took a year of solicitors and meetings while recovering from such an ordeal. It in no way was worth the hassle.

My sisters were tested to see if they were a stem cell match and one of them was, so that was good news.

So 6 years on I am still in remission. Each time I have a blood test there is the nervous moment when you hear your paraprotein results, and each time I'm so lucky they have been zero. I am now back training, albeit at a gentle pace, and feel just as before.

Reading some of the stories on here I realise how lucky I am. Yes, I went through an awful process, but I have come out the other side. At the time of being diagnosed, I could not sleep I was so terrified, and reading your stories has helped me get through the difficult times, so thank you.

I guess the moral I tell friends is that you know your own body, and if you feel something is wrong, do not let anyone – including GPs – tell you otherwise. Push until you are happy with the result.

Thanks, and everyone take care of themselves xx

Russell