My story

[Goldtooth]

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.

[rar]

Have you considered a stem cell transplant?

Ray

[Goldtooth]

Thanks for your reply Ray,
I asked about that when I was first diagnosed and in shock when I was told that was the only cure.
My haematologist said my age was against me and the risk was great.
Unfortunately we are not as far advanced in the UK as you are in America.
I certainly will bring the subject up again in my next review in March.
Our health service is strapped for cash so we are told!!
That's down to mismanagement and wastage, the hospital I attend has only one doctor on the management team which is appalling.
Regards
Tony

[rar]

yes, a transplant is the only cure. If in reasonably good health a SCT is a reasonable option for a 71 YO. I had a SCT a year and a half ago when I was 73. It is a risky procedure and I almost died from GVHD, CMV and c.diff that attacked at the same time. The transplant is fully en-grafted and the remaining GVHD is improving. If you look for "16 months past SCT and doing fairly well. The saga of my transplant, start to now" you will find my complete story. My understanding is if you are to have a transplant it is best to do it when you are in the best of health, rather than waiting for the treatment to stop working. I would do the SCT again if necessary.

Ray

[bailie]

Tony, the Vidaza can be a life saver. I had eight cycles before getting a stem cell transplant at age 68. I start my eighth cycle tomorrow following my transplant. I agree with Ray, if you can get them to make a transplant available it is best to do it when in optimum health.

[Goldtooth]

I am of the same mind as both of you.
I think it is the cost involved that is the unspoken issue here in the UK where the government is pressuring our health service into budget cuts.
A few years ago Vidaza was withdrawn from use because of this and was only reluctantly reintroduced.
Many life extending drugs for many different types of cancer have been discontinued due to budget cuts.
I will be facing an uphill struggle

Tony