I really enjoy receiving stories for the blog, it’s important we share our experiences and inspire others. Please keep them coming. Thanks for this one Sue. K

In 2009 during the winter time I started to have severe problems walking as my knees seemed to lock (I couldn’t bend them by 4pm). I contacted my GP and had a blood test the only comment that my GP made was to ask me if I drank alcohol as my liver test was running a little high. As I take amatriplaline I haven’t drunk since 1990, the two don’t mix.

In 1998 I sustained a severe back injury so I have taken medication for this since that time. I was given water retention tablets as my legs were very swollen I also had an x-ray on my knees which showed damage but I was told that I was too young for a knee replacement.

During the summer of that year I started to notice that I was getting lots of bruising all over my body and I can remember sitting on my bed looking at the bruising and thinking to myself I wonder if I had something like leukaemia. As my knees were a lot better I just thought that I just had arthritis and as the weather changed again I began having knee problems and would get to the point where I couldn’t walk by late afternoon.

In 2010 I went for a flu jab and got a dog as I intended to start walking to try to lose weight over that winter. I continued to bruise a lot and started to get very tired; the problem with my knees continued and again I couldn’t walk properly, this continued during the course of that year

In late September 2011 I went for a flu jab again which I always have as my partner has stage 4 chronic renal failure. As he has diabetes too he always has a diabetic check. During the time we were in with the nurse she took Tony’s blood pressure and I commented that I have never had mine checked so she did mine as well. It was very high but when she took it again it had gone very low so she asked me to keep a check of it and take it from both arms for the next two weeks which I did.

When I took the records into her she seemed a little concerned and as we spoke I showed her my hands which had developed lots of nodules which look like rheumatoid arthritis. She sent me for a blood test on 25th October 2011.

Approximately 4 days later my GP phoned me at home and as he usually wanted to speak to Tony I replied, “hang on I will go and get him” to which he replied, “no Sue its you I need to speak to”. “Your blood tests show that you have CML”, I asked a few questions and wrote down what he told me.

I did do what most people do and looked on the internet about the condition. The information seemed to be saying that if you have to get any sort of leukaemia then this was the one to get as it can be controlled well and could be maintained in the state it was diagnosed in, which I found reassuring.

I attended Dr Campbell’s clinic in Colchester Hospital on 14th November and as I was very keen to start treatment a bone marrow biopsy (BMB) was attempted that afternoon on my hip. Despite 8 attempts this was not successful so on the Friday 16th Dr Campbell took a bone marrow aspiration (BMA) from my sternum.

Once the results were received back I was entered into the SPIRIT2 trial and started on imatinib 400 mg. By 10th January my full blood count was: white cells 4.5. Hb10. Platelets 185.

13/2/2012 white cells 5.7. Hb 11.7. platelets 274.

13/3/2012 white cells 5.1. Hb 13.1. platelets 290.

11/6/2012 Wbc 6.9. Hb 11.7. platelets 282.

At six months into treatment I had a BMA from my sternum which was done by Dr Campbell and only mildly uncomfortable.

21/8/2012 Wbc 5.1 Hb 12.1 platelets 257

BCR-ABL/ABL ratio 0.07%

I was very pleased, well, that’s an understatement with this result.

19/11/2012 Wbc 5.4 Hb 12.4 platelets 316

I had another BMA again from my sternum which again was only mildly uncomfortable at 1 year, this showed I was still in remission.

I am due to see Dr Campbell again on the 13/2/2013 but have no reason to worry as I am feeling fine. As my results changed the issue with my knees has seemed to resolve and I no longer bruise like I did.

The treatment that I have received during this period of my life has been fantastic my consultant has been honest and very informative which I feel has been important to me. I have suffered with some side effects during treatment: severe cramps, periorbital oedema and diarrhoea but I have chosen to continue with the imatinib as I feel I have responded well to this treatment.

All through my treatment I have kept a daily diary which is now included in my medical notes which I will give my permission for anyone to read especially if it will help with any research.

Sue Lusher