I am a 71 year old male living in the UK and I was diagnosed RAEB2 just over a year ago. If my regular doctor had been on the ball and realised that there had been something seriously wrong with me I would have been diagnosed a lot sooner.
I had reoccurring sinus infections for over two years then I started getting nose bleeds and he still did not refer me to a specialist.
I paid to see an ENT consultant privately as my own doctor just prescribed me antibiotics which had some effect on the sinus infections only to return within a week or two.
The ENT immediately said there must be something wrong with my immune system and referred me to a haematologist, this again was funded by me and I had blood tests and a bone marrow biopsy within a week. Well worth the expense!
The haematologist told me I would not be able to afford to pay for the treatment privately but she could treat me equally well on the NHS at my local hospital.
I have been treated with vidaza, in the UK known as Azacitidine for 5 days in every 28 days since January last year.
I am fortunate not to have any of the unpleasant side effects associated with this drug.
At my three monthly review on December 29th the haematologist said she was pleased with how I was responding to the drug. Which is good news indeed.
I am still scared of the future but dark thoughts do not preoccupy me all the time, but they are always lurking at the back of my mind ready to pounce in an unguarded moment.
We have two much smaller charitable organisations such as this one in the UK.
On the 11/1/2015 I start my 14th cycle of Vidaza, long my it continue to be effective.
Best wishes and good luck to all sufferers of this terrible disease.
