My name is Brian, and I wanted to share my experiences with you all.
Approximately 10 years ago I was diagnosed with Behcets syndrome (an auto-immune disease), and after a period of time I was prescribed Azathioprine to control this. I was to have blood tests every 3 months to assess any changes to my body from the Azathioprine. Due to alot of house moving and changes of GP these were not as regular as they should have been.
In December 2011 I noticed that I was becoming very breathless when doing simple things like walking and putting the washing in the machine. I made an appointment with my GP, he sent me for a blood test. The next day my GP contacted me and advised me to stop taking the Azathioprine for 2 days and have another blood test. Once I had had this blood test I was admitted to my local hospital (on the Isle of Wight) as i was severely anaemic. Whilst I was in hospital, after numerous tests I was given my first blood transfusion. After 3 days I was discharged and had to return to the Haematology Outpatients the following week for further blood tests and my first bone marrow biopsy. I had to have a blood transfusion every week and was told if I had any shivering etc to go straight to my local A & E dept.
On January 3rd I started to feel shivery, so went to my local A & E dept where I was admitted and given intravenous anti-biotics. After one night in hospital I was ready to be discharged and prior to this I had a meeting with my Haematologist. He informed me that the years of taking Azathioprine had damaged my bone marrow and I had MDS with 10-20% blasts. Like many others who have been diagnosed with this I was totally unaware of what MDS was. I spent the weekend trawling the internet for information (some good, but most bad!).
In the meantime I was to have regular blood tests and blood transfusions bi-weekly to top my haemaglobin levels up, my platelet levels stayed at a constant level. I was referred to the Haematology department at Southampton General Hospital, and at my first meeting I was told that I would need a stem cell transplant, unfortunately my 3 siblings were adopted at an early age and a search would have to be done for an unrelated donor. I was given the booklet "Seven steps to transplant" which on reading this I suddenly became very scared. In subsequent meetings with my Consultant in Southampton I was informed that a match had been found for me in Germany, this all seemed very quick.
In early February my Uncle and my Father passed away suddenly which was a big shock to all the family on top of the news about my illness. The day before my Fathers funeral I had my 2nd bone marrow biopsy.
On a Friday in early March following a day when I received 3 units of blood I received a telephone call from my Consultant. My MDS had developed into AML and I would need to be admitted to Southampton General Hospital on the following Monday. This all became too much and I spent most of that evening in floods of tears. "I had CANCER" I couldn't believe this was happening to me.
On the following Monday I was admitted to an Isolation Room at Southampton General, I was extremely scared and as I wasn't due to have my central line fitted until the Thursday, nothing happened. I constantly queried this with the nurses as I was anxious that things had not been explained to me. I started the first round of Chemo on the Thursday, I was lucky that I did not experience many side effects to the chemo. Once I had had the chemo I then started to suffer from infections, including one in my central line, which was removed. After 7 weeks in hospital I was discharged, and spent 5 weeks recovering at home. During this period I was informed that the AML had gone into remission.
On 26th May I was admitted again to Southampton General for my transplant. I was very apprehensive as I knew what it was like in Isolation and was due to have some more chemo. I was taking part in a clinical trial for Clofarabine, and then received my pre-conditioning treatment. Once again I was very lucky and did not suffer greatly from any side effects. I received my donors stem cells on 13th June. It was now a case of waiting for the stem cells to "take". After 15 days post transplant my blood counts started to recover, I was eventually discharged on 8th July. I have twice weekly appointments at Southampton and at the last check my Neutrophil level is 1.6.
There is a long way to go until I am fully fit again, and this past 6 months has been a total whirlwind. Friends and family have been amazed at how well I have been coping, and if I am honest, I still don't believe any of this has happened to me. I am unsure whether the experience has changed me, only time will tell.
Brian - M, 39yrs. Diagnosed with AML secondary to MDS Jan 2012. Received Unrelated Stem Cell Transplant June 2012. At home recovering.