MDS, Refractory Anaemia and possible SCT but not possible I'm told.

Hi I did leave a comment for you over on the AML board but just thought I'd reiterate I was diagnosed with MDS RAEB in July 18 and by September 18 it had transformed in to AML with a FLT-3 gene mutation. I'm happy to chat to you about it any time as I also see your husband is expecting to see a professor at the QE in Glasgow who are also going to be handling my SCT in January. 

Hi it's he QE at Birmingham queen Elizabeth 

Hi homealone just come across your post noticed 2017 how are you now if you don't mind me asking ?

Please have a look at my profile. I update it every few months. But I'm doing ok thanks for asking. Tessa

I was diagnosed MDS RAEB2 in November 2015.

i had to go private to get diagnosed as my previous GP refused to admit that my frequent sinus infections were anything other than bad luck, even when I started getting heavy nose bleeds. I asked for a FBC and although another doctor at the practice on seeing the results said I had a bone marrow problem my own GP dismissed this.

The ENT Consultant I had been seeing on a private basis referred me immediately to a Haematologist. Blood tests Monday, bone marrow biopsy Tuesday and results Friday.

I expected the worst and hoped for the best, it floored me when I was told I was incurable.

I asked about a STC but was told at my age I was too old, 71 then.

i have been treated successfully on the NHS with Azacitidine, 5 days in every 28.

last week I completed my 54th monthly cycle, although I’m knackered for a few days after treatment I soon recover.

in fact for someone who is terminally ill I feel very well.

I can imagine your husband and yourself were shattered by his diagnosis as I was with mine.

Dont give up hope, I read a very good quote by Franklin D Roosevelt “ when you come to the end of your rope, tie a knot and hang on” That’s my mantra.

Hi  and welcome to our corner of the Community.

Sorry to hear that you were classed as being old for SCT, the Centre where my two SCTs were ‘done’ now see 71 as being an ok age to go forward. But great that your ongoing treatment is doing the job for you.

Love your mantra.

Hi Goldtooth, it is great to know you have been doing well on treatment, were you given a prognosis on diagnosis ? My husband is going to be starting chemo soon then may be a stem cell transplant.

Yes I was, my prognosis was poor.

I think my Haematologist is rather surprised that I’m still alive, me too.

Hi again have you ever known of any one not responding to chemo ?

Hi , yes some people do not respond to certain types of chemo so their team will have to look at other treatments to make progress.

How are things going with your husband?

((hugs)£